tag:blogger.com,1999:blog-50251112869802152092024-03-14T04:46:09.454+00:00Becoming a Mum... with EpilepsyClarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.comBlogger340125tag:blogger.com,1999:blog-5025111286980215209.post-1158214448933836572017-11-23T06:45:00.000+00:002017-11-23T06:57:16.119+00:00Anxiety, Mindfulness and Me<span style="font-family: inherit;"><span style="background-color: white; color: #303030; font-size: 16px;">This blog was written for the </span><strong style="background-color: white; border: 0px; box-sizing: border-box; color: #303030; font-family: calluna-1, calluna-2, serif; font-size: 16px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><a href="https://livingwellwithepilepsy.com/" style="border-bottom: 1px solid rgb(197, 197, 197); border-left-width: 0px; border-right-width: 0px; border-top-width: 0px; box-sizing: border-box; color: #649fa3; font-size: 16px; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;">Living Well With Epilepsy </a></strong><span style="background-color: white; color: #303030; font-size: 16px;">Blog Relay, November 2017.</span></span><br />
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So I have been battling another one of my demons recently, anxiety... I have always been quite an anxious person, always worrying a lot about everything but it wasn't until I was diagnosed with epilepsy that it started to get out of control. During the first few months of having epilepsy I would wake in the night, with my heart beating in my head in a real state. At the time I put it down to the lamotrigine as after a few months these episodes stopped and I didn't really think anymore about it.<br />
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In the years since there have been moments where my anxiety has seemed to get worse, during my pregnancy with Benji when I was worrying about labour was one of those times but it was then that I learnt about mindfulness and really used it to take some control back over my thoughts and worries.<br />
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When I was planning going back to work I thought it would be ok Benji starting nursery, me starting work, Riley starting school and running my first half marathon all in the same month... but again my anxiety took hold.1<br />
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I started to wake in the nights again with these panic episodes and found it hard to control my mood when I was tired. My thoughts start to spiral out of control and could feel myself panic about every tiny thing. I knew it wasn't healthy and definately wasn't helping things. I also knew I was more likely to have a seizure and I really don't want this seizure free streak to come to an end... but at the same time I don't want to add another medication to my list of meds.</div>
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So I turned to mindfulness. I find that focusing on the breath when my thoughts get out of control helps centre me. And by doing a meditation before bed such as a body scan my sleep is so much improved. It's time consuming but it helps and I know I need to do more to feel more in control.<br />
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I have started trying to fit meditation into every day life more too, just taking more time to concentrate on the tasks we tend to do on autopilot. Like taking time to think about how a meal looks, smells, tastes, feels and sounds as I eat rather than gobbling it down with my mind wondering over other things.<br />
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I think mindfulness should be taught to everyone with epilepsy, everyone with a chronic condition in fact. The research behind it is really solid, <a href="https://www.google.co.uk/url?sa=t&source=web&rct=j&url=http://marc.ucla.edu/workfiles/pdfs/marc-mindfulness-research-summary.pdf&ved=0ahUKEwjghvKS75PPAhXsKcAKHcjDCG4QFggbMAA&usg=AFQjCNHsGnTIor_tRNJ3opx81MNDL4y8gQ&sig2=Z7iIy8oUpyhVielpO5KwzQ">this paper gives a really good overview of some of the benefits seen in mindfulness. </a>It actually changes the way our minds and bodies work for the better. Yet there is next to no provision for it within our health care and I think that needs to change.<br />
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<span style="text-align: center;">There is a lot of information out there on mindfulness and it has become a bit of a fad but honestly give it a chance, find a book that breaks it all down and find the right form of it for you. It might just changet your life. </span><br />
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<span style="text-align: center;">As I sit here early in the morning I can hear the door in the corridor creak, I can feel the cool morning air on my face and rather than letting my worries for the day consume me I feel calm and grounded in the precious present.</span><br />
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<span style="font-family: inherit;"><span style="box-sizing: border-box; font-weight: 700;">NEXT UP</span>: Watch for Jewel's story on <a href="http://liveoutloud4epilepsy.org/">http://liveoutloud4epilepsy.org/</a> the full schedule of bloggers participating in the Epilepsy Blog Relay™ visit <a data-saferedirecturl="https://www.google.com/url?hl=en&q=https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants&source=gmail&ust=1509384424006000&usg=AFQjCNHviAPWEvXwNpJrDgh7MyhBaPBqbg" href="https://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-june-2017-participants" rel="noopener" style="box-sizing: border-box; color: #6e0d84; font-weight: bold; text-decoration: none;" target="_blank">livingwellwithepilepsy.com</a>.</span></div>
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<span style="font-family: inherit;"><span style="box-sizing: border-box; font-weight: 700;">TWITTER CHAT: </span>And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.</span></div>
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Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com32tag:blogger.com,1999:blog-5025111286980215209.post-67747144854940578822017-06-01T22:11:00.003+01:002017-06-01T22:13:27.241+01:00Epilepsy 0 Me 1 ~ finding my confidence again<i><span style="margin: 0px;"><span style="font-family: inherit;">This post is part of the </span><a href="http://livingwellwithepilepsy.com/" target="_blank"><span style="color: blue; font-family: inherit;">Epilepsy </span><span style="margin: 0px;"><span style="margin: 0px; text-decoration: none;"><span style="color: blue; font-family: inherit;">Blog</span></span></span><span style="color: blue; font-family: inherit;"> </span><span style="margin: 0px;"><span style="margin: 0px; text-decoration: none;"><span style="color: blue; font-family: inherit;">Relay</span></span></span><span style="color: blue; font-family: inherit;">™</span></a><span style="font-family: inherit;"> which
will run from June 1 through June 30. Follow along and add comments to posts
that inspire you!</span></span></i><br />
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<span style="font-family: inherit;">6 weeks ago I achieved a lifelong goal I thought I would
never be able to achieve due to my epilepsy, I completed the London Marathon.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span><span style="font-family: inherit;">I haven’t really shared this on my blog so I
thought this would be a great opportunity to do just that.</span></div>
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<b><span style="font-family: inherit;">Rewind 12 years…</span></b><br />
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<span style="font-family: inherit;">I was just about to start university and living life to the
full, I loved running and my dream was to run the London Marathon one day.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span><span style="font-family: inherit;">I was walking back from a training run and
the next thing I knew I was lying confused and sore in the road… looking back
now that was my first seizure.</span></div>
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<span style="font-family: inherit;">I went to university and while running with athletics club I
collapsed again, this time people saw what happened and a few weeks later a
neurologist diagnosed me with epilepsy based on their accounts.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span><span style="font-family: inherit;">I was in shock and felt like I had lost all
confidence in myself along with my independence.</span><br />
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<span style="font-family: inherit;">A few weeks later and I had a seizure on a treadmill, that
was it, my confidence was completely in tatters and I no longer wanted to do
any sport let alone run.</span><br />
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<b><span style="font-family: inherit;">Coming to terms with my diagnosis</span></b><br />
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<span style="font-family: inherit;">There were some dark months when I started medication and
came to terms with what living with epilepsy really meant but slowly I started
to turn it into a more positive things.</span><span style="margin: 0px;"><span style="font-family: inherit;">
</span></span><span style="font-family: inherit;">I started to share my story with other through volunteering for Epilepsy
Action and the amazing website Youth Health Talk.</span><br />
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<span style="font-family: inherit;">Over the years my epilepsy has seemed to settle down only to
raise its ugly head again just as my confidence started to improve.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span><span style="font-family: inherit;">However all the time I have felt that it gave
me purpose to help others and that is what kept me going.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span><span style="font-family: inherit;">I have also met some incredible people on my
journey who inspire me every day.</span><br />
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<b><span style="font-family: inherit;">One year seizure free… I want to run a marathon</span></b></div>
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<span style="font-family: inherit;">Finally I was a year seizure free and to celebrate I decided
to start training for the London Marathon. </span><span style="font-family: inherit;">Running was pretty scary at first, I was
worried about seizures but as I trained I realised that running had a lot of
positive effects especially on my mood which my medications tend to impact on.</span></div>
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<span style="font-family: inherit;">The more I ran and the further I ran the more confidence I
gained in my own body again.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span><span style="font-family: inherit;">By the time
I smashed through the 30km training run mark I felt like I was proving to myself
that maybe just maybe my epilepsy might really be controlled, something I have
really struggled to believe having lived with seizures for 10 years.</span></div>
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<span style="font-family: inherit;">My top tips for running with epilepsy:</span></div>
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<li><div style="margin: 0px;">
<span style="font-family: inherit;">Always tell someone where you are going for a run and how long you plan to be, having a find your friend app really helps put everyone's mind at ease too.</span></div>
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<span style="font-family: inherit;">Build up slowly and don't over do it,</span><i><span style="font-family: inherit;"> </span></i><span style="font-family: inherit;">I started training a year before using the couch to 5k app.</span></div>
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<span style="font-family: inherit;">Consider a seizure alarm, I have an Embrace epilepsy monitor and it has been great running.</span></div>
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<span style="font-family: inherit;">Make sure you don't run if you are unwell, haven't eaten or didn't sleep well the night before especially if these are triggers for you.</span></div>
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<span style="font-family: inherit;">Try mindfulness exercises to help reduce anxiety and help with pre-race nerves.</span></div>
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<span style="font-family: inherit;">Make sure you are very visible so lots of high-vis clothing and lights for the dark winter nights.</span></div>
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<span style="font-family: inherit;">Make sure you have water and fuel (gels or sweets) with you specially when running longer distances.</span></div>
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<b><span style="font-family: inherit;">Marathon Day</span></b><br />
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<span style="font-family: inherit;">Training was hard, training was lonely and training really
impacted on family time so I was pretty relieved when marathon day arrived as
it was the end of a hard six months devoted to slowly building up the miles,
trying to avoid triggering a seizure.</span></div>
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<span style="font-family: inherit;">But most of all I was so excited, finally I had the opportunity
of achieving my life goal.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span><span style="font-family: inherit;">The
atmosphere is amazing and I loved every minute of my marathon run.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span><span style="font-family: inherit;">The crowds really do carry you most of the
way round.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span><span style="font-family: inherit;">I also dedicated a mile to
each of the people I have met on my epilepsy journeys who have inspired me and
made me the person I am today.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span><span style="font-family: inherit;">The final
mile I ran for my amazing family, and I was in tears that last mile, tears of
joy that I was stronger than epilepsy that I could achieve my goals and that I
had made it so far.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span></div>
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<span style="font-family: inherit;">When I crossed that finish line I was in tears, someone
asked if I needed a first aider and I said no, these are tears of joy, this
just means so much.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span><span style="font-family: inherit;">Because it really
did it marked a huge turning point for me, it helped me to believe my epilepsy
was controlled, finally after so many years and I also hope it helps other people
with epilepsy aim for their goals whatever they maybe.</span></div>
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<span style="margin-left: 1em; margin-right: 1em; margin-top: 0px;"><img alt="Image may contain: 3 people, people smiling, people standing, people sitting and child" aria-busy="false" class="spotlight" height="400" src="https://scontent.xx.fbcdn.net/v/t1.0-9/18034091_10154579417094352_3331490836634687696_n.jpg?oh=0b2c96081d499b97fb758d4cae87e80e&oe=59ADBE9E" width="300" /></span></div>
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<span style="font-family: inherit;">So I am sharing this today, hopefully to inspire someone to
try something they don’t think they can achieve no matter how big or small that
challenge might be because if you succeed suddenly you realise you are stronger
than epilepsy and if you don’t quite make it today, tomorrow is a new day and
another chance to show epilepsy who is boss.</span></div>
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<i><span style="margin: 0px;"><span style="font-family: inherit;"><b>NEXT
UP:</b> Be sure to check out Karen’s post tomorrow at <a href="http://livingwellwithepilepsy.com/" target="_blank">Living Well With Epilepsy</a></span></span></i><span lang="EN" style="color: #333333; margin: 0px;"><span style="font-family: inherit;">
</span></span><i><span style="margin: 0px;"><span style="font-family: inherit;">for more
on epilepsy awareness. For the full </span><span style="margin: 0px;"><span style="font-family: inherit;">schedule</span></span><span style="font-family: inherit;">
of bloggers visit </span><a href="http://livingwellwithepilepsy.com/epilepsy-blog-relay" target="_blank"><span style="color: blue; font-family: inherit;">livingwellwithepilepsy.com</span></a><span style="font-family: inherit;">.
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Don’t miss your chance to connect with bloggers on the #LivingWellChat on </span></span></i><span style="margin: 0px;"><span style="font-family: inherit;">June 30 at 7PM</span><i><span style="font-family: inherit;"> ET.</span></i></span><br />
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com47tag:blogger.com,1999:blog-5025111286980215209.post-38989530246624946712017-03-26T09:27:00.003+01:002017-03-26T09:34:41.111+01:00Happy Purple Day 2017 - Don't fear the purple!<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-3L8jy-cxXuw/WNd5CeHgzTI/AAAAAAAABR8/C0-nmQ5qlIsI4iu6eMp_dT_iewIM5C4YQCEw/s1600/16807268_10100419873524745_5237279602312179202_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="360" src="https://2.bp.blogspot.com/-3L8jy-cxXuw/WNd5CeHgzTI/AAAAAAAABR8/C0-nmQ5qlIsI4iu6eMp_dT_iewIM5C4YQCEw/s640/16807268_10100419873524745_5237279602312179202_n.jpg" width="640" /></a></div>
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<span style="font-family: inherit;">Happy Purple Day to all my fellow wonderful epilepsy
warriors. To celebrate purple day and help spread epilepsy awareness around the
world a few of us have decided to reflect on our epilepsy journeys searching
for the rays of light amongst the clouds of epilepsy. </span></div>
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<span style="font-family: inherit;">S</span><span style="font-family: inherit;">o if you enjoy this blog search #PurpleTogether for more
inspirational stories shining a positive light on epilepsy.</span></div>
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<span style="font-family: inherit;"><b>In the beginning…</b></span></div>
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<span style="font-family: inherit;">My epilepsy journey began 13 years ago, I was 18 years old
on a gap year, living life to the full.</span><span style="margin: 0px;"><span style="font-family: inherit;">
</span></span><span style="font-family: inherit;">Having struggled through school where I didn’t feel I fitted in, I was
working hard in a job I loved, had found new friends who accepted me for me, I
was enjoying life, probably drinking a bit too much and sleeping far too little
but so was everyone else. </span></div>
<span style="font-family: inherit;">One day I was out on a training run and the next thing I
remember was waking up lying in a country lane having hit my head and bitten my
tongue. I was very confused but managed to stumble home. I presumed I had
fainted so didn’t really think much more of it but looking back that was my
first tonic clonic seizure I just didn’t realise it. </span><br />
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<span style="font-family: inherit;">A few weeks later I went off to university, enjoying
freshers week and meeting lots of new people my confidence was growing finally
after years of bullying. But then on one of my first athletics training
sessions I collapsed again, this time people were with me and I was taken to
hospital in an ambulance but discharged a few hours later to walk home.</span><br />
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<span style="font-family: inherit;">Armed with witness accounts of the last episode I remember
within a few minutes of seeing the neurologist he explained that it was a text
book tonic clonic seizure and considering the previous unwitnessed collapse it
sounded like I had EPILEPSY. </span><br />
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<span style="font-family: inherit;">I remember crying my eyes out, I couldn’t drive I was in a
new place miles from home and I might have a seizure again at any time, how was
I going to manage this? I felt like the independence and confidence which I had
built up over the last year had been robbed from me in an instant. It wasn’t
fair.</span></div>
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<span style="font-family: inherit;">At that time I was in a pretty bad place, dealing with
seizures, medication increases and being miles from home. So what turned it all
around? Well it was more of a who… the turning point in my epilepsy journey.</span></div>
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<span style="font-family: inherit;"><b>Meeting Stuart</b></span></div>
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<a href="https://3.bp.blogspot.com/-4nqciewoq_I/WNd3n7Te1wI/AAAAAAAABR0/JI6Ct1mfppsCyDpHMYTl0kgtX9MeVLQHgCEw/s1600/14907638_10154092613089352_4197723519014692421_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: inherit;"><img border="0" height="400" src="https://3.bp.blogspot.com/-4nqciewoq_I/WNd3n7Te1wI/AAAAAAAABR0/JI6Ct1mfppsCyDpHMYTl0kgtX9MeVLQHgCEw/s400/14907638_10154092613089352_4197723519014692421_n.jpg" width="300" /></span></a></div>
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<span style="font-family: inherit;">My mum took me to an Epilepsy Action information day in
Brighton while I was home for the holidays. That was when I met Stuart.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span><span style="font-family: inherit;">Stuart is an accredited volunteer for
Epilepsy Action and he stood up to tell his story and suddenly something
switched in my head, Stuart had used his epilepsy to do so much good and make a
difference to others, that was how I could get through this.</span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;">Stuart will never realise what a difference he made in my
life but on Purple Day while reflecting on my journey I would like to thank him
for sharing his story that day and for all his amazing support in the years
since then you have become a truly special friend.</span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;">Over the years my epilepsy has impacted on my life to
different degrees, seizures have happened big and small, my confidence in my
own body has gone up and down and the challenges epilepsy posed on things like
starting a family, work, driving have varied greatly. But the one things which hasn’t
changed is my passion to make a difference to others with epilepsy.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;">I’d like to share a few of the projects that I have been
involved in over the years as a way to show some of the positives and to raise
awareness of epilepsy. If you just chose one to look at further it would be an
amazing way to spread awareness on Purple Day 2017.</span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;"><b>Epilepsy Action</b></span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;">Not long after meeting Stuart I trained to be an accredited
volunteer for Epilepsy Action and over the years I have helped at lots of
information events, supported other people affected by epilepsy and given
epilepsy awareness presentations to care homes, schools, nurseries and
businesses across the south east of England to raise awareness and
understanding of epilepsy.</span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;"><a href="https://www.epilepsy.org.uk/volunteer/accredited/training" target="_blank">Find out more about how we can spread awareness in yourworkplace.</a></span></div>
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<span style="font-family: inherit;"><b>Youth Health Talk</b></span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;">While at university I got involved in an amazing project
with Oxford University where young people shared their experiences of epilepsy
and other health conditions in videos.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span><span style="font-family: inherit;">I
was interviewed for the epilepsy module but was also asked to be on the youth
panel which made decisions on the future of the website and it also meant I met
lots of other inspirational young people.</span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;"><a href="http://www.healthtalk.org/young-peoples-experiences/epilepsy/topics" target="_blank">Visit Youth Health Talk and learn more about what it’s likefacing epilepsy as a young person.</a></span></div>
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<span style="font-family: inherit;"><b>HealthE Mums-to-be</b></span></div>
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<span style="font-family: inherit;">After having our first child and feeling unsupported and alone
Epilepsy Action asked me to be involved in their HealthE Mums-to-be campaign
which was an amazing opportunity to help support other women through the
diaries, interviews and workshops.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;">It also introduced me to the amazing Kim Morley the only
epilepsy midwife in England who helped make our second pregnancy with Benji a
far more positive experience and I can’t thank her enough this purple day.</span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;"><a href="https://www.epilepsy.org.uk/pregnancy-diaries" target="_blank">Read more about the impact of epilepsy during pregnancy andreal pregnancy stories here.</a></span></div>
<span style="font-family: inherit;"><b>This Blog</b></span><br />
<br />
<span style="font-family: inherit;">My blog which started as just my way of writing down my
experience has turned into so much more, it has allowed me to share my story
with so many other women and to help others feel less alone and more empowered
in the pregnancies.</span><span style="font-family: "calibri";"><br /></span><br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;"><b>The seizure and epilepsy support group</b></span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;">Through my blogging I was approached by the lovely Torie to
admin this group with a few others.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span><span style="font-family: inherit;">This
group has given me so much support and also feels like a little family (growing
fast).</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span><span style="font-family: inherit;">I feel like the other admins have
become really good friends although we have never met I know I can turn to them
for advice and they will always make me smile.</span><span style="margin: 0px;"><span style="font-family: inherit;">
</span></span><span style="font-family: inherit;">The group is amazing and I have made friends there who truly understand
what it’s like living with epilepsy.</span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;"><a href="https://www.facebook.com/groups/324889234525834/" target="_blank">Join our online family and find support, friendship and lots of epilepsy knowledge.</a></span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;">So I guess what I am saying is if epilepsy hadn’t entered my
life I would be a very different person.</span><span style="margin: 0px;"><span style="font-family: inherit;">
</span></span><span style="font-family: inherit;">From a practical perspective I look after myself better now, I don’t
drink much, I make sure I get enough sleep, I eat well and exercise.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span><span style="font-family: inherit;">But my experiences which have really shaped
my life are all because of my epilepsy.</span><span style="margin: 0px;"><span style="font-family: inherit;">
</span></span><span style="font-family: inherit;">I have also been lucky enough to meet so many amazing people on my
epilepsy journey who have made me a better person.</span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;"><b>Stronger as a family</b></span></div>
<div style="margin: 0px 0px 11px;">
<a href="https://3.bp.blogspot.com/-qHc32A0oxPw/WNd5C2d1AUI/AAAAAAAABSA/lH8-UnOaMfAY9uHDdlhm3x7vPDd3dBoLACEw/s1600/16996431_10100426866141485_461912143048314517_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: inherit;"><img border="0" height="400" src="https://3.bp.blogspot.com/-qHc32A0oxPw/WNd5C2d1AUI/AAAAAAAABSA/lH8-UnOaMfAY9uHDdlhm3x7vPDd3dBoLACEw/s400/16996431_10100426866141485_461912143048314517_n.jpg" width="220" /></span></a><span style="font-family: inherit;">I also feel blessed because I met my husband at a time when
my epilepsy was at its worst and his support and acceptance of epilepsy showed
me what an amazing person he is and that together we’d be able to overcome the
challenges life will throw at us. </span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;">We are now a little family with our two children who are
incredible and I feel epilepsy has played a part in shaping that and making us
who we are and I wouldn’t change that for the world. I think my children are
more accepting of others health challenges because they have grown up around my
own.</span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;">Epilepsy impacts on the whole family and while I hate that I
have been a burden on my mum and dad over the years when I should have been an
independent adult. I think it has also brought us closer together.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span><span style="font-family: inherit;">My Mum has always been amazing picking me up
when I am down (literally and metaphorically) and my Dad has a way of
supporting me that is much more practical but equally useful.</span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;">Not being able to drive has meant I have spent a lot more
time being driven around by others, many would see this as a lack of
independence and it was frustrating at times but it was also an amazing chance
to talk to the people closest to me and I think brought us closer together. My
Grandad before he passed away, my Mum and Rich all drove me places and I feel
so thankful to them but I enjoyed that time with them just chatting about life.</span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;">So yes epilepsy is awful, it steals your independence and
self-confidence, friends leave and seizures hurt, but would I change having epilepsy?
No I don’t think I would because if I didn’t have epilepsy I wouldn’t be the
person I am today.</span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;"><b>Show your support this Purple Day</b></span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;">I am now two years seizure free, something I never thought
would happen, will it last who knows, but I make the most of the freedom this
seizure freedom gives me.</span><span style="margin: 0px;"><span style="font-family: inherit;"> </span></span><span style="font-family: inherit;">This year I am
running the London Marathon for Epilepsy Action which considering how my
journey started is a huge achievement in itself. I am going to run a mile for
each of the inspirational people I have met on the way.</span><br />
<br />
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<a href="https://3.bp.blogspot.com/-5OhjpH81b-w/WNd8zz7JSiI/AAAAAAAABSU/xQVosRsAU-ggTKOtzcjmOQI_ph9AX1M7QCLcB/s1600/e0d97262-3390-47d7-92a8-871db4337848.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="356" src="https://3.bp.blogspot.com/-5OhjpH81b-w/WNd8zz7JSiI/AAAAAAAABSU/xQVosRsAU-ggTKOtzcjmOQI_ph9AX1M7QCLcB/s640/e0d97262-3390-47d7-92a8-871db4337848.jpg" width="640" /></a></div>
</div>
<div style="margin: 0px 0px 11px;">
<span style="color: purple; font-family: inherit;">Stuart, Torie, Leanne, Vince, Faye, Vicky, Gemma, Linda, Amy,
Victoria, Louise, Samantha, Byron, Rebecca, Jamie, Seb, Jessica, Brendan, Jade,
Daisy, Melissa, Emily, Hayley, Jane, Lydia (and the last mile and a bit, for
everyone who has supported me on my epilepsy journey).</span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;">So happy Purple Day to you all, I hope this blog shines a
positive light on a condition which is so greatly misunderstood.</span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: inherit;"><a href="https://www.justgiving.com/fundraising/clair-cobbold" target="_blank"><b>If you would like to support the 600,000 people in the UK living with epilepsy please sponsor my London Marathon challenge 2017 here.</b></a></span></div>
Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com25tag:blogger.com,1999:blog-5025111286980215209.post-72183882760336411292016-11-16T13:44:00.000+00:002016-11-16T21:41:56.673+00:00Dear Keppra<div dir="ltr">
<b><i>This post is part of the </i></b><a href="http://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov2016participants"><span style="color: #6e0d84;"><b><i>Epilepsy Blog Relay™</i></b></span></a><b><i> which will run from November 1 through November 30, 2016. Follow along!</i></b></div>
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When you were first mentioned to me many years ago a quick google revealed your true colours, your suicidal tendencies, the rage you inflicted upon people and fatigue so horrific I wouldn’t be able to pull myself out of bed in the morning. I didn’t want to know you if that was how you treated people. <br />
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I would continue on with my good friend lamotrigine, I had known her for eight years, she had helped me, reduced my big seizures from one a month to one a year, I could live with that. She wasn’t too bad, if anything she had mellowed me, made me feel more in control of my mood or maybe it was growing up, becoming an adult, I was 19 when I met her. Anyway she seemed safe and I had changed my life to incorporate those out of the blue seizures once a year or so, life plodded on.</div>
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But then lamotrigine seemed to abandon me, two big seizures in three months and more focals in between. I was lost, my safety net gone, eight years she’d stuck by me, eight years she’d brought a bit more control in my life and now what she just left me. Anxiety was taking over, anxiety for the future, anxiety of seizures, anxiety of my own safety.<br />
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And amongst all this anxiety your name was mentioned again, Keppra is your best choice now they said. But why would I want to start hanging around with a suicidal, energy draining, maniac when life already seemed so out of control again and I had my little girl to think about now too. But there didn’t seem much other choice.<br />
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And so you entered my life, at first I was exhausted you literally drained all the energy from me, I would sleep all the time. Then as lamotrigine left the scene completely along with her mellowing nature I felt you pushing my buttons, making me angry, making me sad. It was tough, I hated you to begin with, I am not going to lie.<br />
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But then after six months of putting up with you I realised something, I hadn’t actually had any big seizures since I met you and the small ones were so reduced… that was weird… I had come to accept I would never be completely seizure free, now suddenly you introduced me to a new feeling… hope… it was weak and I tried to push it back but it was definitely there, a glimmer of hope for a seizure free future.<br />
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But if this relationship was going to work out something needed to change… I couldn’t be this tired all the time and my family didn’t deserve me snapping at them every five minutes because you were pushing my buttons. I needed to find ways to live with you.<br />
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Someone suggest vitamin B6 so I gave that a go, it seemed to help a little bit… but I needed more. While running when exhausted seemed counterproductive and a little risky as that was how my seizures had started I decided to try. If nothing else it would test whether you my new ‘friend’ that had been thrown into my life was really worth all this effort or was it just coincidence.<br />
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The running really seemed to be helping, I was less tired and more in control of my mood, I also felt more alive, less mellow… it meant I could feel the highs as well as the lows so maybe you weren’t so bad after all. <br />
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Then I found out I was pregnant, the running had to stop, it wasn’t worth pushing myself and having a seizure and I didn’t want to take the vitamin B6 while I was pregnant either. So I was mixing you Keppra with pregnancy hormones and all the anxiety from my last pregnancy, I was a mess. I needed to find a new way to cope and that was when mindfulness walked in. Mindfulness was that beautiful friend that everyone was talking about but who was so quiet no one could be bothered to actually take the time to really get to know her.<br />
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But in my desperation when you Keppra were pushing my buttons and I couldn’t turn to running or vitamins it was then I took the time to get to know mindfulness and she made me look at life completely differently. She showed me that while my thoughts maybe fluid with ups and downs, maybe partially controlled by you Keppra, there are ways for me to stay in control of them.<br />
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Keppra, you controlled my seizures through pregnancy, through the ups and downs of all those hormone changes, lamotrigine didn’t have that strength. You kept me and my little boy safe and allowed me to have the birth experience I wanted this time round not led by the doctors, led by me, for that I am eternally grateful. Yesterday that baby I carried for nine months turned one, he is healthy and happy and doesn’t appear to have any problems, I can’t thank you enough.<br />
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You have been part of my life for three years now. It’s not been an easy relationship, we haven’t always seen eye-to-eye, and I have had to adapt life to live with you, with a little help from mindfulness. You are one strong minded friend that’s for sure, and I call you a friend now… for you have opened up a world of opportunities, allowing me to drive again, run marathons and just slowly regain my confidence.<br />
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I feel blessed to have you as a friend, to have these opportunities in life again. But I am scared too, you are pushing me to do so much more with my life, life isn’t just plodding along like it did with lamotrigine. But what if you abandon me like lamotrigine did and all the seizures and anxiety returns, what then? That’s when mindfulness steps in, in all her beauty and reminds me to focus on my breathing, on the sunshine streaming through the window, on the sound of my fingers typing on the keys, on the here and now and suddenly those worries drift away and I am left content in the present.<br />
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Clair</div>
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<b><i>NEXT UP: </i></b><i>Be sure to check out the post tomorrow by Jessica E on </i><a href="http://livingwellwithepilepsy.com/" target="_new"><span style="color: #6e0d84;"><i>http://livingwellwithepilepsy.com</i></span></a><i> For the full schedule of bloggers visit</i><a href="http://livingwellwithepilepsy.com/epilepsy-blog-relay/ebr-nov2016participants"><span style="color: #6e0d84;"><i> the Participants gallery.</i></span></a></div>
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<a href="https://lh3.googleusercontent.com/-bxZdUsqbj_0/V_JYYFGP4II/AAAAAAAABPU/cbRxy2Wt90E/s1600/FB_IMG_1463289540016-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://lh3.googleusercontent.com/-bxZdUsqbj_0/V_JYYFGP4II/AAAAAAAABPU/cbRxy2Wt90E/s640/FB_IMG_1463289540016-1.jpg" /> </a> </div>
Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com27tag:blogger.com,1999:blog-5025111286980215209.post-86307334171331364982016-11-13T12:39:00.001+00:002016-11-13T12:42:43.929+00:00The big secret about potty training!<p dir="ltr">When a child turns two suddenly the word on every parents lips is potty training… if you think the pressure for your child to walk or talk first was intense… you have experienced nothing until you enter the unchartered, unsupervised waters of potty training.  At least there was no bodily fluids involved when learning to walk and talk and there was a health visitor checking their every skill level intently with surveys and check-ups, giving you tips and ideas. </p>
<p dir="ltr">No when it comes to potty training you really are alone and weirdly surrounded by parents and children who are apparently natural masters of the potty… you will hear ‘my child just decided one day he didn’t want to wear nappies anymore and potty trained himself’  ‘have you tried the three day technique, it’s amazing, I just don’t understand what all the fuss is about?’ ‘my little one was dry within a week of getting rid of nappies’ ‘I can’t wait to get rid of these expensive nappies’ ‘isn’t it awful the number of children still in nappies when they start school? Lazy parenting’.</p>
<p dir="ltr">That September school deadline looms over you, you know they NEED to be dry by then or you are going to be that lazy parent who expects the school to toilet train your child.  The media are pushing it, nappy companies are trying to squeeze every last penny out of you with pull ups and training pants and health visitors are weirdly no where to be found at this point and you feel like EVERYONE is judging you.</p>
<p dir="ltr"><b>The reason 10% of children aren't dry by five...</b></p>
<p dir="ltr">The last two years have been the hardest two years of parenting for us. I have felt like a failure as a parent, like the only one who couldn’t teach their child the simple skill of using the toilet rather than their clothes to wee and poo in… there have been tears and temper tantrums from all parties involved… but then I found out something… 10% of children are not fully toilet trained at 5 years old… even more are not toilet trained at 4… so where are all these parents and why do we have so much pressure placed on us to achieve a goal which for 1 in 10 children is unachievable?</p>
<p dir="ltr">I am going to speak out for those 10% now, I hope that someone reads this and doesn’t feel like the failures that we did. </p>
<p dir="ltr">There are lots of reasons why children might not want to use the potty or toilet, for example, anxiety, fear or just plain stubbornness but what I am going to talk about is a medical reason which I now know affects 1 in 10 children aged 5 and which I feel every parent should be given information about.  </p>
<p dir="ltr">Even more importantly is that having started talking to women whose children have been exposed to anti-epileptic drugs in uterus, this seems even more common in this population of children.  Obviously there is no research, no reliable data to support this claim as with most of the impact of AEDs on unborn babies, it isn’t a priority for anyone to research at the moment. </p>
<p dir="ltr">If I had been told this could be a side effect of my medication would I have not had children? Definitely not, however if I had been told to watch for signs of an overactive bladder would I have approached potty training completely differently… absolutely and the last two years would have been very different.  Hindsight is a glorious thing and I will definitely be looking at potty training Benji very differently.</p>
<p dir="ltr"><b>So what is an overactive bladder?</b></p>
<p dir="ltr">We now describe Riley’s bladder as a naughty bladder.  You may also hear this condition being called a ‘twitchy’ bladder.  When the bladder fills with urine these ‘naughty’ bladders send messages that the child needs the toilet before the bladder is fully full.  This means that the child will have a small bladder capacity and so will need to go to the toilet more frequently.  When the bladder squeezes this can be so strong that urine leaks out then and there, causing damp pants something we have been struggling with for years and meaning Riley has to change her clothes multiple times a day.</p>
<p dir="ltr">So the symptoms are: </p>
<p dir="ltr">- Frequent weeing (8 or more times a day) </p>
<p dir="ltr">- An urgent need to get to the toilet quickly </p>
<p dir="ltr">- Smaller bladder capacity</p>
<p dir="ltr">- Urinary tract infections</p>
<p dir="ltr">- Children will often try to stop the need to wee by squatting, sitting on an ankle or standing on tiptoes.</p>
<p dir="ltr">But with Riley these symptoms have only become clear in the last year or so as she has grown older and more able to communicate complex ideas.  Before that it was much more vague, she just didn’t seem to get potty training and yet she was meeting all her other milestones even ahead in things like imagination and emotional maturity.  She just had a lot of accidents and never told us when she needed a wee so we just thought she was being lazy or we were doing it wrong.  </p>
<p dir="ltr">We tried every reward we could think of, marbles in a jar, sticker charts, Velcro charts, a shop that she got coins towards every time she did a wee or poo.  We tried rewarding wees and poos, we tried rewarding staying dry instead. We bought a wobble watch to remind her to use the toilet every 30 minutes.  We got her to change her clothes herself after an accident to try to show her it is much easier to use the toilet.  Every time we introduced something new she improved but within two weeks she would slip back again it felt like taking three steps forward then two steps back and it was exhausting.</p>
<p dir="ltr">Finally I couldn’t take anymore I went to the drop in health visitor clinic and when I was told they were too busy to see me and the clinic was really only for babies I broke down in tears in the waiting room and finally got to see a health visitor.  She came and did a home visit and it quite quickly became clear we hadn’t done anything wrong and they weren’t able to really offer much more advice. Finally we got a referral to a paediatric urologist…</p>
<p dir="ltr"><b>The moment </b><b>everything</b><b> changed</b></p>
<p dir="ltr">So I wrote everything down and went along to the appointment, the doctor was lovely talking to Riley as well as me.  She sat and listened to everything, my two years of a nightmare.  Then she smiled, a kind but knowing smile… she said to me I wish I could tell you that your child is unique however almost every parent who walks through that door tells me the same story.  She then explained to Riley and me that Riley had a naughty bladder and she said to me that Riley was particularly receptive for a 4 year old and so we could introduce an easy exercise to try to help.  But the main thing is that most children grow out of this problem… so we just have to wait.</p>
<p dir="ltr">Why did no one mention this before… why did no one say 1 in 10 children won’t be dry by school at it’s not the child or parent being lazy… it’s a medical thing that no one can change. Suddenly I looked on the whole situation differently.  We had just spent two years trying to get Riley dry in pants… I had even bought some ‘Dry like me’ pads but didn’t want to use them in case it made her lazy.</p>
<p dir="ltr">I left that appointment and went straight to the shops, I bought Riley a little bag, some nappy sacks and a packet of wipes and the next day I showed her the ‘Dry like me’ pads.  I explained to her that the pads would mean that when her bladder was naughty and squeezed some wee wee out that it would go in the pad, it wouldn’t smell, it wouldn’t make her clothes wet and all she had to do was change the pad herself when she went to the toilet.  This has been a game changer. Suddenly our life isn’t ruled by toilet training. Riley can manage her own pads and when to use the toilet 95% of the time, we still get the odd accident but it is so much more manageable.</p>
<p dir="ltr"><b>My</b><b> top tips for managing an overactive bladder:</b></p>
<p dir="ltr">Make sure your child is getting enough fluids, they should have over 1000mls of water at the age of four, that is quite a lot and it does take persistence to achieve.  This helps the bladder to fill and stretch and also stops the urine getting too concentrated which can make the ‘twitching’ worse.</p>
<p dir="ltr">Only allow your child to drink water.  Other drinks can again increase the twitching, caffeine is the worst, so tea, coffee, cola are definitely off limits.  Artificial colourings and flavourings can make bladders more ‘twitchy’ too so we always avoid these and even natural blackcurrant juice can have an impact.  With Riley we give her watered down apple juice as a treat as this tends to have the least impact.</p>
<p dir="ltr">Take your child to the toilet at regular intervals to try to do a wee especially when they are busy, a vibrating watch can make your child more independent with this.  It can be hard for them to differentiate between their bladder being naughty and squeezing and when they really do need to go to the toilet so when they are busy it is easy for them to forget.</p>
<p dir="ltr">Measure how much urine your child is producing when they wee. The problem suddenly became clear to us when Riley had a kidney scan and the radiographer said she only had 60mls of urine in her bladder and so couldn’t possibly need a wee even though Riley said she did.  I went home and started measuring each wee and suddenly realised she wasn’t ever producing more than 80mls of urine.  Her scan was sent back as normal so I had to go back to the GP to make it clear this wasn’t normal.</p>
<p dir="ltr">When they go to the toilet make sure they empty their whole bladder.  It can be good to encourage them to count while on the toilet and blow out.</p>
<p dir="ltr">If your child is struggling with poos, or doing poos in their pants, even if they go everyday they could be constipated.  We give Riley a small cup of prune juice each morning which seems to really help her.  Being a little bit constipated can put pressure on the bladder and make it even harder for a child to work out when they need a wee. </p>
<p dir="ltr">Don’t be afraid to use ‘Dry like me’ pads.  These are like sanitary pads and go in their pants.  If your child’s pants are constantly damp the pad will stop them having to change their clothes so often, will stop them being smelly and getting sore.  Forget trying to get them dry, just aim for them to be able to manage the problem independently.  It turns out schools aren’t so bothered about dryness, they just want the child to take responsibility for their toileting.</p>
<p dir="ltr">Try to encourage your child to try to hold their wee, the doctor said to Riley to try to count to 30 elephants when she feels she needs a wee and see if the urge to wee has gone.  That way you can train the bladder to fill and stretch a bit more, increasing its capacity.</p>
<p dir="ltr">Get the school onside, explain your child’s problem, make it clear they can’t wait for toilet breaks and if they are using pads show them that they have a little bag that contains everything they might need.  Our experience has been that the school has been amazing and really supportive.</p>
<p dir="ltr">Don’t worry about night time dryness, it may seem like everyone else’s children are out of nappies at night but if your child’s bladder can only hold 100mls of fluid in order to keep them dry at night your child will have to be getting up quite a lot to manage a dry night.  Also the twitching doesn’t stop at night so they may well leak without waking up.  Surely a goodnights sleep is more important for everyone.  Night time dryness is also reliant on the child producing enough of a hormone called vasopressin which your body needs to stop you making so much wee at night.</p>
<p dir="ltr">I really hope this blog helps another family struggling with toilet training feel less alone and empowers you to look at things differently.  I will be looking at the whole process very differently when I potty train Benji, I have learnt so much from the past two years about the amount of pressure we put on ourselves and our children to achieve developmental milestones.  </p>
<p dir="ltr"><a href="http://www.eric.org.uk/"><i>ERIC</i></a><i> is a brilliant charity who have some brilliant resources for parents, children’s and school and who have been fantastic with giving us advice through their helpline so I would definitely encourage parents to contact them if you are struggling.</i></p>
Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com16tag:blogger.com,1999:blog-5025111286980215209.post-84622139660962781062016-11-08T22:29:00.000+00:002016-11-15T19:56:42.593+00:00Running safety month and epilepsy<div class="x_MsoNormal" style="text-align: center;">
<img alt="Winter running season is definitely here! #lifegoals #londonmarathontraining for @epilepsyaction" class="_icyx7" height="400" id="pImage_10" src="https://scontent.cdninstagram.com/t51.2885-15/s640x640/sh0.08/e35/14262872_335376243494367_2209340561565941760_n.jpg?ig_cache_key=MTM3OTI0NjY5NDIzNTM1OTM4Ng%3D%3D.2" width="400"></div>
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The clocks have turned back, the leaves are falling from the trees, it’s dark when I leave work and I’m scrapping the ice off the car in the morning… that can only mean one thing autumn most definitely has arrived. I have six months left until the London Marathon and I need to keep my training on track but it’s hard in the cold and dark evenings. </div>
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It turns out that November is running safety month so it seemed like a good opportunity to sit down and make sure I am safe out running.</div>
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I am very used to risk assessing activities, while I never let epilepsy stop me from living life to the full I am not one to go into anything without thinking about how I can make it as safe as possible. That has quite possible saved me in the past, for example, when I had a seizure on a chair lift skiing, I had risk assessed for that very occurrence and so had a harness on and was strapped to the chair lift… had I not things could have ended very differently.</div>
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So safe running when you have epilepsy. First off visibility is crucial, if you have a seizure while crossing a road you want the cars to be able to see you and stop rather than run you over! So the more visible the better. I wear a bright running jacket and reflective hat with lights front and back and a light up arm band just to be safe. </div>
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I always plan my runs to be on roads which have a pavement and are well lit sticking to the more major roads, for some of my longer runs I know that the pavements are a little uneven so I add a head torch into the mix just to be extra safe.</div>
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Up until recently my husband and my strategy for help if I had a seizure was plan a route and an approximate time and if I wasn’t back by then send out the search party. However with my longer runs taking over 2 hours (and getting longer as the marathon approaches) that means I could be lying in a ditch for quite a while!</div>
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Enter the Empatica embrace watch which I ordered nearly two years ago in a crowdfunding programme. It arrived a few weeks ago and has really boosted my running confidence. It will detect if I have a seizure and call my husband and with the help of a location app like ‘Friend Locator’ he can come straight out and find me.</div>
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Confidence is a big part of running for me, my seizures started 12 years ago during running so there is a mental link there for me. I also know that a big trigger for me is stress and anxiety so feeling confident that I am safe in turn will reduce the chance of me having a seizure.</div>
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Then just other general safety bits, try to cross busy roads at designated crossings and don't be tempted to just dash out in front of a car because you don't want to break your stride, jogging on the spot is a good way to keep moving while you wait for the lights to change.</div>
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Then of course like any runner I like to keep a record of my runs and progress. I love the ‘Strava’ app for that, it really helps me stay motivated to keep going with my training and with the cold dark evenings really approaching that is going to be key to my successful training.</div>
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I hope that this blog helps other people with epilepsy feel more confident to get out and run as I really do feel running is so beneficial for everyone but even more so when you have a long term health condition. It helps regulate mood, keeps you healthy and just builds self-confidence and self-esteem. A great way to get started is to the 'couch to 5k' app, it builds up from very low activity to 5k runs in a matter of weeks and is really achievable. So get those running shoes on and hit the paths.</div>
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If you would like to support my London Marathon attempt and help people living with epilepsy you can sponsor me at <a href="http://www.justgiving.com/clair-cobbold/">www.justgiving.com/clair-cobbold/</a> </div><div class="x_MsoNormal"><br></div><div class="x_MsoNormal"><a href="http://simplisafe.com/" target="_BLANK" original_font_attr="-1" original_line_height_attr="">SimpliSafe</a>,
a company that created a <a href="http://simplisafe.com/wireless-security-systems" target="_BLANK" original_font_attr="-1" original_line_height_attr="">
new type of home security</a> for active people, is promoting National Runners Safety Month and I was inspired to share my own advice<br></div>
Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com46tag:blogger.com,1999:blog-5025111286980215209.post-27869044276689069572016-11-03T21:55:00.000+00:002016-11-03T21:58:27.034+00:00Review ~ Empatica Embrace <div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-c6in6wryYFM/WBuvh_rqh9I/AAAAAAAABQA/wGwX7feCf5UDSjyPHkmQCLbhURomvY39gCLcB/s1600/embrace.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="189" src="https://3.bp.blogspot.com/-c6in6wryYFM/WBuvh_rqh9I/AAAAAAAABQA/wGwX7feCf5UDSjyPHkmQCLbhURomvY39gCLcB/s400/embrace.jpg" width="400" /></a></div>
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<span style="color: black; margin: 0px;"><span style="font-family: inherit;">Two
years ago my husband bought me the empatica embrace watch as a Christmas
present. It was a sort of crowdfunding scheme so it wasn’t as straight forward
as buy the item and receive it in the post a couple of days later. The
plan was for it to be released in October 2015 so there was quite a wait and
obviously the risk that it might never happen. I read a lot about the
watch and what they were trying to achieve. To produce a product which
would alert a carer to a seizure wherever the person was and also monitor
stress levels (a particular trigger for me and I feel many people with epilepsy
but something we can all develop strategies to have some control over), while
also be comfortable to wear and look good at an affordable cost all made me
feel this was a good thing to take a risk to support.</span></span></div>
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<span style="color: black; margin: 0px;"><b><span style="font-family: inherit;">Two years ago...</span></b></span></div>
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<span style="color: black; margin: 0px;"><span style="font-family: inherit;">Two
years ago I was in a very different place with my epilepsy, I had had two tonic
clonic seizures in three months, we had decided lamotrigine wasn’t going to be
the drug to control my epilepsy and so I was weaning onto keppra. We were
also thinking about a second baby and not long after ordering the embrace we
found out I was expecting in October 2015 so we were hopeful the embrace would
arrive on time for baby’s arrival and a period where seizures are always more
likely and with a vulnerable baby having an alarm always helps everyone’s
confidence.</span></span><br />
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<span style="color: black; margin: 0px;"><span style="font-family: inherit;">Unfortunately
as with all the best made plans there were problems with development of the
embrace, however this is a risk you take when you crowdfund something, and
empatica did keep us up to date with what was going on throughout so I cannot
fault them. We carried on with our rather frumpy (and extremely
expensive) alarm which only worked in the house. By some miracle we
started to realise that the leveteracitam seemed to be working and after 10 years of
seizures, it appeared I was seizure free.</span></span><br />
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<span style="color: black; margin: 0px;"><span style="font-family: inherit;"><b>Celebrating one year seizure free</b></span></span></div>
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<span style="color: black; margin: 0px;"><span style="font-family: inherit;">So how
would any normal person celebrate a year’s seizure freedom but by signing up
for the London Marathon! I was a keen runner through school, it was my
way of getting away from everything, however it was while running that my
seizures began, in fact three of my first four seizures happened during or
shortly after a training session. So running the marathon seemed like the
perfect way to show epilepsy that I had won and if I could raise a load of
money for others with epilepsy in the process even better.</span></span></div>
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<span style="color: black; margin: 0px;"><span style="font-family: inherit;">So I
started running, I have two children so my main training time was after giving
Benji his last feed so I would usually leave the house at 8pm, as my distances
built I wouldn’t be getting home until 10pm and our strategy for knowing
whether or not I had had a seizure… figure out how long the run should take and
if I am not back by that time send a search party out… that could mean me lying
there for 2 hours! In the long summer days this worry was quite easy to
push to the back of my mind I am not so sure it was so easy for my poor husband
sitting at home waiting for me.</span></span></div>
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<a href="https://3.bp.blogspot.com/-c6in6wryYFM/WBuvh_rqh9I/AAAAAAAABQA/wGwX7feCf5UDSjyPHkmQCLbhURomvY39gCLcB/s1600/embrace.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a></div>
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<span style="color: black; margin: 0px;"><b><span style="font-family: inherit;">Introducing the embrace epilepsy monitor</span></b></span></div>
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<a href="https://1.bp.blogspot.com/-nUmVZs6jpIA/WBuviX84OuI/AAAAAAAABQE/m5so5CYkUxM05AppkMTxSyow6-qdX2DFgCLcB/s1600/Embrace%2B2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-nUmVZs6jpIA/WBuviX84OuI/AAAAAAAABQE/m5so5CYkUxM05AppkMTxSyow6-qdX2DFgCLcB/s320/Embrace%2B2.jpg" width="293" /></a><span style="color: black; margin: 0px;"><span style="font-family: inherit;">But then
autumn arrived, the cold, dark evenings set in and I started running in the
dark… suddenly the worry of having a seizure and not being found for hours
became a little more real and running became a little less appealing… but then
what arrived… yes my embrace watch.</span></span></div>
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<span style="color: black; margin: 0px;"><span style="font-family: inherit;">I cannot
explain how excited I was, it turned up in an attractive package, and it looked
amazing, not like a medical item but a stylish watch. My kids loved the
flashing lights and I couldn’t wait to set it up. Now I am not going to
lie set up took a while… however I am fairly sure that was my own fault… my
phone memory was full, it hadn’t updated for months and hardly unsurprisingly
the embrace wouldn’t connect. So I started clearing out my phone, running
updates and then once that was done the embrace connected no problem.</span></span><br />
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<span style="color: black; margin: 0px;"><span style="font-family: inherit;">All I
can say is I love the embrace, it is comf</span></span><span style="color: black; margin: 0px;"><span style="font-family: inherit;">ortable, to the point where I don’t
notice it when I sleep at night, I have a fit bit too and always found that
quite uncomfortable to sleep in. It looks good, no one has asked me ’what
is that thing on my wrist?’ With my old alarm which looked like a lump of plastic
anyone who popped round for a cup of tea would ask about it. I presume everyone
just thinks it is a watch and the best bit is that it is a watch and I haven’t
been able to wear a watch ever because the batteries die so quickly with me.</span></span><br />
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<span style="color: black; margin: 0px;"><b><span style="font-family: inherit;">Seizure alert function</span></b></span></div>
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<span style="color: black; margin: 0px;"><span style="font-family: inherit;">So the
alarm function, as I said I haven’t had a convulsive seizure for over two years
so I am unlikely to be able to test whether it actually works when you have a
seizure. However I have had a few false alarms. All have been for
activities which I would say are similar to having a seizure so I think that
shows it works rather than being a downside of the watch, my old alarm went off
a lot more than this so I feel it is pretty accurate. </span></span><br />
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<span style="color: black; margin: 0px;"><span style="font-family: inherit;">One
false alarm was when I was scrubbing my little girls car seat and when it also
went off while brushing my teeth I swapped it onto my non-dominant hand and
since then there has only been one time it has alarmed and that was pushing my
buggy along a very bumpy path… which pretty much makes your arm shake like it
would during a seizure.</span></span><br />
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<span style="color: black; margin: 0px;"><span style="font-family: inherit;">The one
negative with the watch is that it needs to be charged for about an hour or so
every day, this can be done from a computer or charger with a USB connection, I
have started doing this in the evening at home or while at my desk if I am
working so at a time when there are other people around. There is also the fact that to contact family members there is going to be a monthly cost which as of yet is still to be announced, but I am really hoping it won't be too much.</span></span><br />
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<span style="color: black; margin: 0px;"><b>The major test... running</b></span></div>
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<a href="https://4.bp.blogspot.com/-YIYpZCeVE7A/WBuxcNLSXoI/AAAAAAAABQY/Z_vA-8PP7eEwaSO-v-OletPUYK2WCF2dgCLcB/s1600/embrace%2B3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://4.bp.blogspot.com/-YIYpZCeVE7A/WBuxcNLSXoI/AAAAAAAABQY/Z_vA-8PP7eEwaSO-v-OletPUYK2WCF2dgCLcB/s320/embrace%2B3.jpg" width="216" /></a><a href="https://2.bp.blogspot.com/-7VvrBbh-ddw/WBuvj1-UyDI/AAAAAAAABQI/ldOzgoZx1ictACiUJZprAw-mfQaNPnkxwCLcB/s1600/embrace%2B3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><span style="color: black; margin: 0px;"></span><span style="color: black; margin: 0px;"><span style="font-family: inherit;">Next was
the real test… running… so on Tuesday I set off on my run, would it alarm?
Would it stay connected to my phone? Well the answer is no it didn’t alarm and
yes it did stay connected and the peace of mind this brings to me and my family
is immense. Over the next 6 months I am going to be scaling up my running
in preparation for my marathon attempt. I am going to be running in the
dark for long periods of time on my own, and finally we have a full proof plan.
If I have a seizure the embrace will let my husband know and he can locate me
with a simple find a friend location app. That peace of mind is priceless
and will help to make the next six months of training a lot less risky.</span></span></div>
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<span style="color: black; margin: 0px;"><span style="font-family: inherit;">The
final test was when I got home I had a shower wearing the embrace… a little
scared of mixing water and electrics as I have put my phone in the wash many
times. The embrace states it can be worn in the shower, rain and even for
swimming (just not in salt water) and you know what it was absolutely fine
after a shower. Which is an amazing step forward as my old alarm was not
water resistant so I was vulnerable when in the shower or even washing up as I
was worried it would get splashed.</span></span></div>
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<span style="color: black; margin: 0px;"><b>Stress monitoring</b></span></div>
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<span style="color: black; margin: 0px;"><span style="font-family: inherit;">Finally
the embrace also comes with the ‘Mate’ app, this is the basis of the stress
monitoring system. It is in the very early stages and currently just
measures quality and quantity of sleep and basic activity information but even
that is quite interesting to look at. It is quite crude and the one thing
I would say is that the step counter isn’t very accurate in day to day
activities but seems to become more accurate if you go for a run. However
I can definitely see where the app is headed and I am really excited for future
updates. I hope that one day it will allow me to monitor my stress
levels, to develop mindfulness strategies to control them, as I feel
controlling these is key for me in remaining seizure free long term.</span></span></div>
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<a href="https://2.bp.blogspot.com/-pJAQb-Ima8o/WBux1XAUY0I/AAAAAAAABQc/rTo7CdotEboFQYnJwJBGR4gwsalxHNnFACLcB/s1600/Embrace%2B4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="258" src="https://2.bp.blogspot.com/-pJAQb-Ima8o/WBux1XAUY0I/AAAAAAAABQc/rTo7CdotEboFQYnJwJBGR4gwsalxHNnFACLcB/s320/Embrace%2B4.jpg" width="320" /></a></div>
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<span style="color: black; margin: 0px;"><span style="font-family: inherit;"><br /></span></span>
<span style="color: black; margin: 0px;"><span style="font-family: inherit;">I can’t
thank the empatica team enough for this amazing product, it is helping me to
feel more confident when looking after my kids on my own or while out running
and training for the marathon. I really do feel this is going to be life
changing for so many people living with epilepsy.</span></span></div>
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<span style="color: black; margin: 0px;"><br /></span></div>
<span style="color: black; margin: 0px;">To find out more about the embrace watch visit their website <a href="https://www.empatica.com/product-embrace" target="_blank">here.</a></span><br />
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com41tag:blogger.com,1999:blog-5025111286980215209.post-84017325145398220322016-10-16T13:49:00.004+01:002016-10-16T13:50:36.012+01:00Auction of Promises ~ Saturday 29th October 2016<div class="separator" style="clear: both; text-align: center;">
<a href="https://scontent.xx.fbcdn.net/v/t1.0-9/14469635_10100348510461895_6162701676111075792_n.jpg?oh=f4f085959e69a85bd6a173622715bd82&oe=58A1DBEE" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" aria-busy="false" aria-describedby="fbPhotosSnowliftCaption" border="0" class="spotlight" height="318" src="https://scontent.xx.fbcdn.net/v/t1.0-9/14469635_10100348510461895_6162701676111075792_n.jpg?oh=f4f085959e69a85bd6a173622715bd82&oe=58A1DBEE" width="320" /></a></div>
Next year I am running the Virgin London Marathon to raise money for Epilepsy Action who help support the 600,000 people in the UK living with epilepsy. They have helped me immensely over the last 12 years and I couldn't imagine running for anyone else. This is a huge challenge for me as my seizures started while running but I am determined to beat epilepsy and complete my life's dream of running a marathon. I am holding an auction of promises to help meet my fundraising target of £2000. It would be fantastic if you could come along to the event and bring as many friend's as possible, alternatively if you can't make it we have some auction items to bid on before the event so please drop me an email with your bid to claircaxton@hotmail.com<br />
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<b>Date:</b> Saturday 29th October 2016<br />
<b>Time:</b> 2pm - 4pm<br />
<b>Venue:</b> Horizon, Assembly Walk, Carshalton, Surrey, SM5 1JH<br />
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<b>Items in the auction open for pre-bids (send bid by email to <a href="mailto:claircaxton@hotmail.com">claircaxton@hotmail.com</a>)</b><br />
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2 hours in a professional recording studio with an award winning producer and leaving with a professional quality recording on CD or online<br />
CV and interview advice by a professional recruitment consultant<br />
Horse transport (up to 100miles) and groom for a day (excluding plating tails)<br />
Linked in profile copywrite<br />
5 hours of babysitting in the Redhill/Reigate area<br />
Improvers ski lesson by professional ski instructor (at Brentwood ski slope, transport can be included)<br />
3 hours of base guitar lessons<br />
Cooking tutorial from a professional chef culminating in a restaurant quality 3 course meal in your own home<br />
An amazing made to order cake from Little Blossoms Cakery (truly works of art)<br />
Vintage China for an event for 30 people perfect for a baby shower or hen party<br />
Fudge factory experience<br />
Pony experience - spend half a day learning to care for and then ride a pony (children under 8 years)<br />
<b><br /></b>
<b>Auction items available on the day only:</b><br />
<br />
Transport to and from the airport<br />
Beginners knitting lesson<br />
Family meal including desert delivered hot to your door<br />
1 to 1 make up lesson by professional make up artist<br />
Juggling lesson<br />
2 hours of ironing<br />
Kids rainy day craft box<br />
frozen slow cooker throw bags<br />
2 hours of gardening<br />
Pet portrait<br />
Meal for four people cooked in your own home<br />
5 beginner piano lessons<br />
<br />
<b>We are also going to have a raffle on the day and raffle prizes so far include:</b><br />
<br />
Family ticket to Godstone Farm<br />
Afternoon tea for 2 at Edibles in Banstead<br />
2 person ticket to Bockett's Farm<br />
Garson's Farm gift voucher<br />
Woodcote Green garden centre gift voucher<br />
Free bowling at Tolworth Bowl<br />
Mini canvas by the talented artist Jenny Greenland<br />
£10 dry cleaning voucher for Banstead<br />
1/2 case of wine<br />
30 minute go karting session in Crawley<br />
And much much more...<br />
<br />
Also on the day there will a cake sale with tea and coffee, crafts for the children, face painting and Riley will be singing a song to make everyone smile!<br />
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If you aren't able to come along to the event but would still like to support my marathon attempt anything you can donate would be greatly appreciated. My just giving page is:<br />
<br />
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<a href="http://www.justgiving.com/clair-cobbold">www.justgiving.com/clair-cobbold</a></div>
Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com12tag:blogger.com,1999:blog-5025111286980215209.post-83535757751385318132016-08-15T11:24:00.001+01:002016-08-15T11:34:56.927+01:00Medication in pregnancy ~ does the guilt ever go?<p dir="ltr">When you are pregnant you want to do everything you can to protect your unborn baby.  You watch what you eat and drink, giving up things you loved before just in case it impacts on the life you are growing inside you.  But for those of us who have no choice but to take medication during pregnancy it is a huge weight on our mind throughout those 9 months and beyond.</p>
<p dir="ltr"><b>Pregnancy and the early days</b></p>
<p dir="ltr">That first scan is so scary, but then so is every scan after that, what if they find something, what if the drugs have affected the baby, I think it’s the only time in life where you want your child to be completely average and I felt blessed that both mine were.</p>
<p dir="ltr">Then they are born and the relief that both my babies we’re ok was huge.  The first few days with Benji were a worry, he didn’t poo straight away and the doctor was questioning whether his digestive tract had developed correctly.  We heard her making irate phone calls to the consultant and the whole time I was sat there thinking maybe this is because I took Keppra in pregnancy.  It turns out he is fine but the worry at the time was very real.</p>
<p dir="ltr">So once they are home I though the guilt would pass, we have two healthy children we could get on with life.</p>
<p dir="ltr"><b>Small problems start to show</b></p>
<p dir="ltr">But then we noticed Riley’s eyes would sometimes roll outwards, to begin with I thought I was imagining it but by the time she was two others started to notice it too. It turns out she has a divergent squint, she controls it really well and I am so proud of how grown up she is when she goes to the hospital and has her eyes tested.  But in the back of my mind I question why does she have this problem, could it be the lamotrigine I took in pregnancy?  She may need surgery in the future, it’s not a problem that is likely to go away and I worry that other children will notice her eyes and bully her for it.</p>
<p dir="ltr">Then there are her little toes, they are slightly deformed, they are slightly high on her foot and the nails are small and impossible to cut. I have mentioned it to the doctor and we were told they may well bother her when she gets older and require a small surgery to correct them.  But a few weeks ago Riley asked me why her toes are funny, it was because Benji’s are normal so when I cut their nails together I can do his really quickly but with hers I have to get clippers out and try to pull the nail back to cut them and it hurts her.  She asked why her nails were so hard to cut when Benji’s toes were so much smaller and yet his nails were easy to cut…</p>
<p dir="ltr">Finally there is potty training, this has been a complete nightmare, the hardest part of parenting so far for us… we have tried everything.  We have used so many different reward charts, we have got her to clean up the mess, we have used a wobble watch to remind her to use the toilet, we have given her big drinks to try to stretch her bladder and still we have regular accidents. </p>
<p dir="ltr">Don’t get me wrong things are improving, we definitely have less accidents now than 18 months ago but we struggle to go more than 2-3 days without an accident and some days we will have loads.  The health visitors are all out of ideas, nursery are all out of ideas and for a child so bright and articulate it seems strange she can’t grasp a simple concept of using the toilet.</p>
<p dir="ltr">At first it was really hard seeing all her friends just getting it.   But it has gone on for so long now I have learnt to accept it but it is still hard when there are children so much younger than Riley who are successfully potty trained.</p>
<p dir="ltr">There is also so little support out there when you are struggling.  I had to break down in floods of tears to the health visitor to even see them.  We had a scan done and it showed her kidneys are normal but it would appear her bladder is small.  We don’t know why yet but we have finally got a referral to the paediatric urologist, it has taken a long time and a lot of heart ache to get there.  And now I wonder could it be the medication I took in pregnancy which is behind this problem.</p>
<p dir="ltr"><b>Could it be the medication?</b></p>
<p dir="ltr">The truth is we will probably never know whether these problems are caused by the lamotrigine because while data is collected on major birth defects at birth, small problems like this are not recorded anywhere and without the large data sets you can never tell whether it’s just unlucky that she has these problems or whether it’s due to the drugs.</p>
<p dir="ltr">Of course these little problems wouldn’t have stopped me having a baby because I was taking epilepsy drugs, I wouldn’t change Riley for the world.  I suppose it’s more the guilt that is linked with them, I blame myself for Riley’s problems.  Because no one can tell me either way whether it’s the drugs I blame myself for the decisions I made, like to up my lamotrigine dose during pregnancy because my levels dropped. </p>
<p dir="ltr">It’s also a funny situation because I feel like because Riley and Benji were exposed to different drugs during my pregnancy and Benji doesn’t seem to have these problems that if I had taken the plunge and tried Keppra sooner Riley might not have these problems.  I chose not to try Keppra sooner because I was worried about it effecting my mood because of all the things I had read about it so I feel guilty for that.</p>
<p dir="ltr"><b>What needs to change?</b></p>
<p dir="ltr">I suppose what I am trying to say is that more needs to be done to record the long term effects of medication on children exposed to it in uterus. Drug companies need to take more responsibility for their medications so women can have all the facts available to them.  I wouldn’t have chosen not to have children because of these small problems but now I feel guilty for every problem my children have, it would be good to know which are linked to the medications and which aren’t and just to receive better support and understanding from health professionals.</p>
<p dir="ltr">There is so much information on the risks of smoking and alcohol in pregnancy and at the end of the day there is no need for women to smoke and drink in pregnancy (and the risks seem pretty obvious) yet there is so much data on the risks.  But for medications that many women have no choice but to risk in pregnancy the data just isn’t being collected and that seems wrong somehow.</p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://lh3.googleusercontent.com/-G_720DSa6cs/V7Gaz0jXbVI/AAAAAAAABNU/lKcvhZq4rVA/s1600/20160803_144258.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://lh3.googleusercontent.com/-G_720DSa6cs/V7Gaz0jXbVI/AAAAAAAABNU/lKcvhZq4rVA/s640/20160803_144258.jpg"> </a> </div>Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com13tag:blogger.com,1999:blog-5025111286980215209.post-39401500504727743842016-08-11T14:10:00.001+01:002016-08-14T14:42:53.391+01:00Update on life!<p dir="ltr">I haven’t written anything for a while and yet so much has been happening, and I guess that is the point of this blog.  It’s been a very busy few weeks, I have returned to work, Benji has started nursery and we finally got a referral to the paediatric urologist for Riley. Meanwhile I have been continuing the running training for the marathon next year and feeling the pressure of needing to begin to fundraise. <br>
I would love to say that I have coped with all this fantastically well, and I hope that to the outside world it seems I have, but on the inside I have been really struggling and at one point was right on the edge so here’s the honest truth condensed down to one blog.</p>
<p dir="ltr"><b>Benji’s growing independence</b> </p>
<p dir="ltr">Benji is a star, so laid back, so easy and I feel totally blessed to have him.  He has started at nursery which I have to say I was really nervous about as it took Riley so long to settle and while I can’t say he loves it, I feel like he has accepted it and so I don’t feel too guilty.  He has also just started to crawl and is into everything!  </p>
<p dir="ltr">Yesterday I noticed four new teeth seem to have sprouted from nowhere and he hasn’t really made a fuss.  We’ve had the starting nursery sickness to contend with as well, lots of new bugs so last week he had a temperature and last night I was clearing up sick!  But all in all he is doing really well and growing up so fast!</p>
<p dir="ltr"><b>Riley on the road to school</b></p>
<p dir="ltr">Riley starts school in a matter of weeks, she is excited and can’t wait.  She has grown up so much and while she has the odd difficult moment she is a joy to spend time with, she cares so much about others and is funny and her character is really starting to shine through.  That’s why the next blog I am going to write is going to be a tough one to write, there are a few little things which she has to deal with that I just wonder, ‘are they linked to the lamotrigine I took in pregnancy?’ but that is a long story and will be the basis of my next blog.</p>
<p dir="ltr"><b>Work and run</b></p>
<p dir="ltr">So my seizures remain controlled with the Keppra which to me is a miracle, no focal seizures for coming 20 months, no tonic-clonics for 28 months! I have my driving licence back, my confidence is growing with the kids and I feel great.  I am now back at work, at a desk all day, and I find that quite hard but it has to be done.  I am also doing great on my marathon training, now running 5k well within 30 minutes 2 times a week with longer runs as well, so I am now up to running 15k.  With my first half marathon in 5 weeks’ time I feel like I have achieved a lot in the last few months and overcome a massive hurdle.</p>
<p dir="ltr"><b>Anxiety attacks</b></p>
<p dir="ltr">So all this change has come at a cost, Keppra has been the drug to control my seizures, I feel so blessed for that, but it hasn’t been plain sailing that’s for sure. I can’t say whether it is the Keppra itself or the fact that for 10 years I was on lamotrigine, a mood stabiliser and maybe I just got used to that but lets face it all these drugs change the way our brains work, they control the activity going on in there.  </p>
<p dir="ltr">There is no getting away from the fact that since I made the change from Lamotrigine to Keppra I have had to work a lot harder at finding strategies to regulate my mood.  When times get tough like that have in the past few weeks I start to feel myself falling apart.</p>
<p dir="ltr">So I know that I have been more snappy towards Rich and I am so glad that he puts up with me, I can’t thank him enough for all the support he give me.  I have found that running really helps me to regulate my mood, it gives me some me time away from the kids and allows me to reset.  But the biggest challenge over the last month has been my anxiety.  </p>
<p dir="ltr">I started waking in the night having anxiety attacks, with my heart racing and pounding in my head.  I used to get this when I was first diagnosed with epilepsy and all I can say is it makes going to bed really scary.  So after three nights of this happening I started to feel the anxiety growing in the day, then one day I thought it was going to happen while I was out at the park dealing with the kids, I panicked and started to leave the situation and luckily calmed down.  </p>
<p dir="ltr">But that episode made me realise everything had got too much for me and I needed a coping strategy.  So cue mindfulness, I had let meditation slip over the last few months.  As things get busy finding the time to actually meditate seems to fall to the bottom of the pile.  But after these anxiety attacks I started prioritising it before bed, and wow I can’t explain how quickly I felt more in control.  </p>
<p dir="ltr">Since starting 30 minutes of meditation each day I haven’t had any more anxiety attacks, day or night and just feel able to cope again.  I have also found a great running meditation which kills two birds with one stone! Yes it another thing which takes up my time, but it really does improve my quality of life.</p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://lh3.googleusercontent.com/-ZMx64N4it28/V6x5KxQqkvI/AAAAAAAABMI/lMub8qeGNbA/s1600/20160803_145131.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://lh3.googleusercontent.com/-ZMx64N4it28/V6x5KxQqkvI/AAAAAAAABMI/lMub8qeGNbA/s640/20160803_145131.jpg"> </a> </div>Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com0tag:blogger.com,1999:blog-5025111286980215209.post-11117738708915509142016-06-29T11:58:00.001+01:002016-06-29T12:22:59.178+01:00My 2017 London Marathon Challenge really begins!<p dir="ltr">With my place confirmed on the Epilepsy Action London Marathon team 2017 now seems to be a good time a step up both my training and fundraising as both are a huge challenge but one I am looking forward to.</p>
<p dir="ltr">So I want to start by sharing why running the London Marathon is such a huge challenge for me. I have always wanted to run the marathon I guess it's one of my biggest life goals. At school I did long distance running, something very few people were keen on! I ran 1500m at all the school competitions not because I was an amazing runner but more because noone else wanted to and I used to run 10k in sub 1 hour so I wasn't a bad runner and I enjoyed it!</p>
<p dir="ltr">However I had my first big tonic-clonic seizure, 12 years ago, walking home after a training run, I had my second seizure while running with my athletics club and I had my forth seizure on a treadmill. I quickly lost confidence in running, put the challenge of running a marathon to the back of my mind along with the idea of driving. That diagnosis of epilepsy really knocked my confidence but it was Epilepsy Action who gave me hope that I could live a full life.</p>
<p dir="ltr">In the past 10 years my volunteering with Epilepsy Action has given me a purpose, I feel like my epilepsy diagnosis has given me an opportunity to help others, that something positive has come from it. </p>
<p dir="ltr">By giving epilepsy presentations to care providers, businesses and other groups I have helped make our world a more understanding place for people with epilepsy. By helping at events I have met so many amazing people effected by epilepsy, their stories have inspired me to do more with my life and I hope my story has helped others to. By getting involved in campaigning I hope I have helped make a small change to the bigger system that means others with epilepsy won't have to go through some of the more negative experiences I have had to fight my way through.</p>
<p dir="ltr">So now I want to achieve the life goal epilepsy made me place on the shelf so many years ago, I am going to run the 2017 London Marathon and I couldn't imagine running it for anyone else other than Epilepsy Action.</p>
<p dir="ltr">Running the marathon is a big enough challenge in itself but the fundraising goal I have is also a pretty big goal for me too, and something I have never really done before. </p>
<p dir="ltr">So I ask you my friends to help me with this, it doesn't have to be by giving money (although if you can spare a little that would be amazing, you can visit my just giving page <a href="https://www.justgiving.com/fundraising/Clair-Cobbold">here</a>) just words of encouragement to get out there running when it's cold and wet would be amazing. I'll also be holding cake sales and hopefully an auction of promises so it would be great to see you at them, just watch this space.</p>
<p dir="ltr">So the challenge begins, here we go!</p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://lh3.googleusercontent.com/-aYxZlaXwT_k/V3Ovjffc0II/AAAAAAAABLU/ClDGhy_jemQ/s1600/IMG-20160619-WA0005.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://lh3.googleusercontent.com/-aYxZlaXwT_k/V3Ovjffc0II/AAAAAAAABLU/ClDGhy_jemQ/s640/IMG-20160619-WA0005.jpg"> </a> </div>Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com0tag:blogger.com,1999:blog-5025111286980215209.post-85953125277543438612016-05-18T09:23:00.001+01:002016-05-19T07:12:06.074+01:00SUDEP ~ the other side of the Epilim debate<p dir="ltr">So a few weeks ago I was invited along to share my story at the Epilepsy Action pregnancy symposium in Wales. It was an amazing opportunity for me and I feel my story really helped highlight the need for better support for women with epilepsy throughout pregnancy.</p>
<p dir="ltr">It was fantastic to see so many health professionals from across Wales interested in making women with epilepsy have more positive birth experiences. I was really surprised to see what a good level of specialist support they seem to have across Wales with epilepsy nurses attending anti natal clinics to give support. Yet in our area just South of London there was next to no specialist <u>input</u>.</p>
<p dir="ltr">But the day also highlighted to me a darker side of epilepsy and I have been umming and arghing about how to write this post. Reading <a href="http://fairyfaye1986.weebly.com/blog/blog-47-epilepsy-death">this post</a> about the importance of bringing epilepsy and death out of the shadows has kick started me into writing this.</p>
<p dir="ltr"><b>Risks of Epilim (Sodium Valporate)</b></p>
<p dir="ltr">We have all heard the awful stories of women having been on Epilim during pregnancy and not being informed of the risks to their baby. Of the babies born with birth defects and neurodevelopmental problems.  The day really did highlight the importance of informing women of these risks which is brilliant but it also addressed the other side of the coin... the fact that epilepsy can kill.</p>
<p dir="ltr">The reason I am writing this is because women should be given all the information when making a choice about medication during pregnancy. </p>
<p dir="ltr">I have heard people say Epilim should be band in women of child baring age but this is why it shouldn't, because every woman should be given all the information then given specialist support to come to the right decision for them.</p>
<p dir="ltr"><b>Gender gap in treatment of generalised epilepsy </b></p>
<p dir="ltr">Epilim is the most effective treatment for generalised epilepsy (things like Juvenile Myoclonic Epilepsy). If a man walks into an epilepsy clinic with a generalised epilepsy syndrome he'd be put on Epilim as a first line drug. If it's a young girl or women they would try other drugs, drugs less likely to work, it turns out keppra is one of the most effective drugs aside of Epilim so it's very positive that it is appearing to be fairly safe in pregnancy.</p>
<p dir="ltr"><b>Real Story ~ to raise awareness</b></p>
<p dir="ltr">They told a story which really hit home to me of a women who had been on Epilim for JME throughout childhood and it had controlled her seizures completely. She then wanted to start a family and made the difficult decision to change to what was then seen as the safest medication in pregnancy, lamotrigine. She started to have a few seizures again but got through the pregnancy and had a healthy baby.</p>
<p dir="ltr">After the birth she saw her neurologist and they discussed if she wanted to go back on Epilim but because she wanted a second child she decided to stay on Lamotrigine and live with the seizures. A few months later her husband found her blue on the bathroom floor, he was unable to resuscitate her, at her inquest the family were told she had died from SUDEP.</p>
<p dir="ltr"><b>SUDEP ~ the information </b><b>everyone</b><b> should have</b></p>
<p dir="ltr">Seizure control is the best way to reduce SUDEP so sadly if this woman had chosen to restart Epilim her child would probably still have a mother. It's a horrible truth but one that is not spoken about enough. </p>
<p dir="ltr">The risk of SUDEP increases in the first year after birth, it makes sense and yet I never really considered it. Lack of sleep, hormonal changes, forgetting medication as we are running around after our little person, all increase our risk of seizures and thus our risk of SUDEP.</p>
<p dir="ltr">We say women should have all the information about epilepsy drugs in pregnancy to make a decision and I think that is totally right.  I just wonder whether this women was given all the information about SUDEP to add into that decision.</p>
<p dir="ltr">Epilim does carry a fairly substantial risk to a baby in pregnancy <a href="https://www.gov.uk/drug-safety-update/valproate-and-of-risk-of-abnormal-pregnancy-outcomes-new-communication-materials#summary-of-risks-and-precautions">(you can find more information here) </a>but uncontrolled epilepsy increases the mothers risk of SUDEP and that needs to be considered too <a href="https://www.sudep.org/what-sudep-1">(you can find more information on SUDEP here)</a>. </p>
<p dir="ltr">Lets face it not all women want to have children, women may be happy to take the risk of Epilim or maybe adoption is a better option for them but at the end of the day what women need is ALL the information and a supportive knowledgeable health professional to discuss it with so they can make there own informed decision about their health and the health of their baby.</p>
<p dir="ltr">Epilepsy is a difficult condition to get your head around in fact when a group of health professionals were asked whether they would rather have a diagnosis of epilepsy, diabetes or asthma, epilepsy was the least popular and yet there is an 70% chance that by taking a tablet twice a day you will never have another seizure again... but maybe it's all these extremely difficult topics that the condition throws up because at the end of the day weighing up your own risk of death against your babies risk of being harmed is a horrible and really tough decision to make.</p>
<p dir="ltr">We are amazing women, fighting tough battles, we deserve all the information and a supportive team of health professionals around us. Let's fight for that together.</p>
Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com1tag:blogger.com,1999:blog-5025111286980215209.post-2012344702941634392016-05-16T09:39:00.001+01:002016-05-16T11:33:02.544+01:00It's National Epilepsy Week ~ let's get talking about epilepsy<p dir="ltr">So this week is National Epilepsy Week and a survey by Epilepsy Action shows many people with epilepsy still fear discrimination and are worried about talking about their epilepsy.</p>
<p dir="ltr">So I was thinking wouldn't it be great if we could use this week to start turning that around. How? By sharing our own stories of epilepsy, showing people that yes Epilepsy can be scary and unpredictable but we all battle through it and come out stronger and more reliable people, better partners, children, parents, friends and employees because we have been through hell and just got on with it, it may not feel like that on the hard days but we are all amazing epilepsy warriors.</p>
<p dir="ltr">So here goes, my story, I would love it if others shared there own stories in the comments, doesn't have to be pregnancy related just show the world we are stronger than epilepsy.</p>
<p dir="ltr">I was diagnosed with epilepsy 12 years ago aged just 19 and around the time I stated university. When I was first diagnosed I was lost, scared and I felt my whole life hinged on becoming seizure free, like everything was put on hold waiting for that to happen. Seizures were so unpredictable, with no warnings and knocking me out for days, how could I function like that?</p>
<p dir="ltr">There were a few periods where it looked like it would happen, months with no tonic clonic seizures and then bam a seizure would happen out of the blue. It was like it was teasing me. There have been some dark days where epilepsy definitely pushed ahead in the battle.</p>
<p dir="ltr">Eventually after 6 years of these intermittent tonic clonic seizures I found the strength to challenge my neurologist about why it wasn't going away. His response of well that's just how it is  wasn't enough for me so I pushed to see an epilepsy nurse and got refered to London.</p>
<p dir="ltr">Finally I saw a doctor who really listened to me. She did more tests and re diagnosed me with temperal lobe epilepsy and said she felt I was having focal seizures. Suddenly a reality hit... I hadn't been seizure free for months ever, these little focal seizures had been there the whole time I just didn't really link the two.</p>
<p dir="ltr">With a proper diagnosis I started talking to other people with the same type of epilepsy and other professionals and it became clear that while the seizure frequency tends to be relatively low seizure freedom can be hard to get especially after so much time. I then <u>I</u> started to realise I couldn't continue to put my life on hold waiting for seizure freedom. I needed to start living life with seizures.</p>
<p dir="ltr">So I started looking for ways to cope with the anxiety I felt from the unpredictability of seizures. I enrolled on the expert patient programme and looked into mindfulness, both helped me come up with strategies to manage my anxiety.</p>
<p dir="ltr">Then I started to live life, finding a job my epilepsy didn't effect so I could give it my all, having two amazing children, riding my horse, skiing in America and getting out running again. I didn't let epilepsy win.</p>
<p dir="ltr">So 12 years after my diagnosis I am in fact 18 months completely seizure free... it is a miracle and yet not a miracle I needed to live life. People say you must be so pleased, and I smile and say yes I am. But am I pleased? Of course I am happy but I had already accepted a life with seizures in order to make sure I didn't miss out on living life so being seizure free I don't like to think about too much because if I do have a seizure again I don't want to feel the incredible disappointment I have so many times before - I don't want to miss out on life because of it.</p>
<p dir="ltr">I guess what I am trying to say is don't let epilepsy win. Have hope things will improve but also find a way to live in the worst times otherwise we miss out on so much.</p>
<p dir="ltr">Sending lots of love to all my fellow epilepsy warriors and their families and friends who stand by them, hope to read your story <u>soon</u> <u>xxx</u></p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://lh3.googleusercontent.com/-3Tc1SofQMuk/Vzmh2tmqq4I/AAAAAAAABLA/CFQ44H9I9UA/s1600/FB_IMG_1461771335150.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://lh3.googleusercontent.com/-3Tc1SofQMuk/Vzmh2tmqq4I/AAAAAAAABLA/CFQ44H9I9UA/s640/FB_IMG_1461771335150.jpg"> </a> </div>Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com2tag:blogger.com,1999:blog-5025111286980215209.post-24790740540806873332016-03-30T22:25:00.001+01:002016-03-30T22:27:56.875+01:00
All Wales Epilepsy and Pregnancy Symposium, Cardiff
~ Wednesday 20th April 2016
<p dir="ltr">This looks like a fantastic event for health professionals and will hopefully help build understanding of epilepsy and pregnancy and what extra care women with epilepsy need on their journey.</p>
<p dir="ltr">I also feel honoured that I have been invited along to the day to share my own experiences with health professionals and I'm really looking forward to it.</p>
<p dir="ltr">The day is going to look at:</p>
<p dir="ltr">Epilepsy, diagnosis and management, seizure types, treatment</p>
<p dir="ltr">Teratogenicity of anti epileptic drugs, valproate and learning disability</p>
<p dir="ltr">Pre-conceptual counselling, contraception and fertility</p>
<p dir="ltr">Management of pregnant women with epilepsy - a confidential enquiry </p>
<p dir="ltr">Epilepsy Care in Pregnancy </p>
<p dir="ltr">UK Epilepsy and Pregnancy Register </p>
<p dir="ltr">Ante natal care</p>
<p dir="ltr">Labour, delivery and post delivery</p>
<p dir="ltr">Safety issues</p>
<p dir="ltr">Personal experience of epilepsy and pregnancy</p>
<p dir="ltr">So looks like an excellent day. If you are a health professional and would like to attend you can find out more about the event and book your free place <a href="https://www.epilepsy.org.uk/near-me/cardiff-all-wales-epilepsy-and-pregnancy-symposium">here</a>.</p>
<p dir="ltr">I'll be writing about the event afterwards so watch this space! </p>
Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com0tag:blogger.com,1999:blog-5025111286980215209.post-75010107631436079632016-03-26T08:36:00.001+00:002016-03-26T08:42:03.636+00:00Purple Day 2016 ~ Epilepsy fighters <p dir="ltr">Today is purple day and a great chance to raise some awareness about epilepsy and what living with it really means.</p>
<p dir="ltr">Epilepsy is so much more than just seizures and it's impact is not just on the person with epilepsy but everyone who loves that person to.</p>
<p dir="ltr">It's the unpredictability of it, yes seizures are awful, they knock you back and make you feel awful for hours and even days.</p>
<p dir="ltr">But it's the fact you never know when a seizure might happen that means you are always on edge, constantly risk assessing.</p>
<p dir="ltr">The longer you go without a seizure the more your confidence grows but then if epilepsy does hit again it knocks all that back.</p>
<p dir="ltr">So many times I have thought I had won only to be knocked back again by epilepsy. But epilepsy will never win I won't let it stop me living my life, having the family I want, riding my horse, skiing.</p>
<p dir="ltr">This purple day I am seizure free for 16 months and driving again. I have 2 beautiful children and feel confident again I hope epilepsy doesn't steal that confidence but you know what if it does I will fight back again.</p>
<p dir="ltr">Happy Purple Day to all those fighting epilepsy and all those supporting us in that fight.</p>
<p dir="ltr">Share your stories proudly and build awareness.<br>
</p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://lh3.googleusercontent.com/-CYDqkjQhQSM/VvZLM-NfKlI/AAAAAAAABKg/CNynrrYy8jM/s1600/IMG_6854.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://lh3.googleusercontent.com/-CYDqkjQhQSM/VvZLM-NfKlI/AAAAAAAABKg/CNynrrYy8jM/s640/IMG_6854.jpg"> </a> </div>Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com0tag:blogger.com,1999:blog-5025111286980215209.post-87937066940984099362016-03-19T03:00:00.000+00:002016-03-19T08:33:44.921+00:00Care in a perfect world ~ Epilepsy Blog Relay<div dir="ltr">
<strong><em>This post is part of the </em></strong><a href="http://livingwellwithepilepsy.com/" target="_blank"><span style="color: #0072c6;"><strong><em>Epilepsy Blog Relay™</em></strong></span></a><strong><em> which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!</em></strong><br>
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I 've been thinking long and hard about what to write about for the blog relay and I've decided following on from the Royal College of Midwives awards last week I'm going to look at how care of women with epilepsy especially through pregnancy and early motherhood needs to improve.</div>
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Becoming a mother is a huge decision for anyone, it's a daunting prospect the idea of bringing a tiny person whose completely reliant on you into the world and helping them to become a valued member of society.</div>
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Then add epilepsy to the mix which brings with it so many additional complications, the risks that come with the epilepsy medication, the fact no matter how well controlled your seizures are you are labelled high risk and the fact you are going to be looking after someone so vulnerable while also suffering a condition which is so unpredictable. It's a scary thing.</div>
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So you'd think that with so many issues to think about there would be good support systems for women with epilepsy but unfortunately often there is very little support. Most women are being looked after by a general neurologist who probably doesn't even specialise in epilepsy and who won't be able to see them in months. There are areas of the country where there aren't epilepsy nurses and with only one epilepsy midwife in the whole of England paid for just 6.5 hours a week who can women with epilepsy talk to about starting a family? </div>
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It leaves women with epilepsy pretty alone in this scary situation and so they turn to google and online forums, which are a great resource to share experiences but one which should be backed up with real life knowledgeable support. </div>
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It's little wonder I speak to women and they are really frightened to start a family, they are being told about the risks of their drugs on babies with little support in all the other issues epilepsy places on pregnancy. We need better support for women or we're going to be going back to a time where women with epilepsy feel they can't have a family due to their condition which is not the case.</div>
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<strong>Risks of medication</strong></div>
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At the moment there is quite a lot of media out there about the risks of epilepsy medication in pregnancy and rightly so. Women should be given ALL the facts and the fact so many women were not told about the risks of their drugs and the impact they could have on their unborn child is disgusting.</div>
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But I fear things maybe going too far the other way, without the right support this information is extremely frightening for women. I have spoken to women on some of the safer medications who are terrified and considering not having a family because of the risk and you ask them who they have spoken to about it and it's no one. They have read the risks online and have tried to see their neurologist but have to wait months for an appointment.</div>
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Please don't get me wrong women should be given the facts about there medication and the impact on an unborn baby but they should also be able to talk their worries through with someone so they can weigh up the joys of childhood with the risks of the medication and ways to reduce the risks.<br>
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You can find out more about the risks of epilepsy medications <a href="https://www.epilepsy.org.uk/info/women/having-baby/planning/medicines-pregnancy">here.</a></div>
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<strong>The pitfalls of being labelled 'high risk'</strong></div>
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Having epilepsy automatically makes you a 'high risk' pregnancy whether you are having convulsive seizures daily or have been fully controlled for years. But what does 'high risk' mean? Well it seems to vary greatly from area to area. Some people have great joined up care between their epilepsy team and obstetric team, unfortunately I think usually this doesn't happen. </div>
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It certainly didn't for me in my first pregnancy. I was stuck in the high risk clinic seeing an obstetric registrar whose knowledge of epilepsy was limited. I went along with everything they said with very limited birth choices and it lead to a fairly traumatic birth experience.</div>
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When it came to my second pregnancy I really had to fight to get birth choices as I wanted things to be different, I wanted a natural birth with minimal intervention. My epilepsy was well controlled and yet because I was considered high risk I had to fight to have any choice in my birth, luckily I had an epilepsy midwife backing me up. </div>
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I was told I couldn't be in the birth unit because I was 'high risk' even though my pregnancy had been completely straight forward, my epilepsy had been completely controlled and the birth unit was in the same building as the main ward. For me stress and anxiety trigger my seizures so being in a more homely environment would have been beneficial for me but it was a definite no. Instead I chose to stay at home as long as possible and arrived at the hospital fully dilated ready to push. Benji arrived 42 minutes after arriving at the hospital. It was an amazing birth experience because I was in control the whole time.</div>
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I feel women with epilepsy need to be treated as individual's and put in control of their care not just labelled high risk and put in a system which doesn't really meet there needs.<br>
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<strong>Women need more support after the birth</strong><br>
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There are many additional issues women with epilepsy face following birth. The additional issues around looking after a baby when you have epilepsy, weighing up putting in place safety features with just being a mum. Breastfeeding while on anti epileptic medications and looking out for side effects in the baby. Epilepsy medication levels varying following birth and side effects these may cause. The issues around contraception and how epilepsy medication impacts on this. These are all important issues to consider before the birth but also which women need ongoing support with after the birth.<br>
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Epilepsy Action have some great resources to help give women with epilepsy lots of information throughout their pregnancy journey <a href="https://www.epilepsy.org.uk/info/women/having-baby">here</a>.<br>
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So what would I like to see in the perfect world? I hope that every women with epilepsy is seen as an individual and given support and information from health professionals with specialist epilepsy knowledge so that rather than just being labelled 'high risk' they are supported to take control of their birth experience. <br>
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Because I know from experience when you have a condition like epilepsy which takes so much control away from you by getting the right support and being given back as much control as possible it makes your birth experience so much more positive.<br>
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<strong><i>NEXT UP: Be sure to check out the next post tomorrow at <a href="https://www.facebook.com/EmilysEpilepticDays/">Emily's Epileptic Days</a> for more on Epilepsy Awareness. For the full schedule of bloggers visit</i><em> <a href="http://livingwellwithepilepsy.com/epilepsy-blog-relay" target="_blank"><span style="color: #0072c6;">livingwellwithepilepsy.com/epilepsy-blog-relay</span></a>.</em></strong><br>
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<strong><em>Be sure to check out the Epilepsy Blog Relay <a href="https://www.thunderclap.it/projects/38104-epilepsy-blog-relay-mar-16" target="_blank"><span style="color: #0072c6;">Thunderclap</span></a> to raise epilepsy awareness. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET.</em></strong></div>
Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com1tag:blogger.com,1999:blog-5025111286980215209.post-9935756756589962292016-03-12T22:12:00.000+00:002016-03-12T22:12:14.457+00:00Epilepsy shone at the RCM awards this weekAs the previous blog explained we nominated Kim Morley the epilepsy midwife who helped to give us such a positive birth experience with Benji for Emma's Diary Mum's Midwife of the Year.<br />
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Well Tuesday was the big day and we went up to London to find out who would win overall. It was such a lovely day and so great to catch up with Kim again and for her to finally meet Benji.<br />
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Epilepsy Action's HealthE Mums-to-be campaign was nominated for the Charity Initiative award and I am so happy to say they won. Two of the lovely people from Epilepsy Action went up to receive the award and Kim and myself joined them as we both worked on the project. They also won £2000 to put towards future campaigns which I am sure they will put to great use, I would really love to see a campaign around parenting with epilepsy as it holds a lot of challenges but we will see.<br />
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Then all the regional Mum's midwife of the year winners went up on stage, it was pretty nerve wracking but Benji was a star and it was so lovely to see Kim receive her award and our way of saying thank you to her. Then came the moment they announced the overall winner and it was Kim, it was an amazing feeling to see Kim get the recognition she so deserves but also to highlight the need for better care for women with epilepsy.<br />
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We then had to be interviewed which was again quite nerve wracking although I'm sure far more so for Kim.<br />
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<a href="https://2.bp.blogspot.com/-slh1CAK8BRc/VuSS8gUc13I/AAAAAAAABKI/42GEnD6bnrcb01V2HNJ9KOAep29ar6GHg/s1600/Kim.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-slh1CAK8BRc/VuSS8gUc13I/AAAAAAAABKI/42GEnD6bnrcb01V2HNJ9KOAep29ar6GHg/s320/Kim.png" width="225" /></a>We then also found out that Kim was going to talk on Radio 4s Women's Hour the next day which was a fantastic opportunity. I think she did an amazing job to fit such a huge topic into a 5 minute interview slot and she spoke so passionately. If you would like to listen to it you can find the pod cast <a href="http://www.bbc.co.uk/programmes/b072mm0c">here</a>.<br />
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I really hope that this opens up an opportunity to highlight the need for better care for women with epilepsy during pregnancy across the board, it's about so much more than the risks of the medications, it's all the other factors at play both medical, social and psychological and women just don't get the support they need. Anyway I will not go on to much about that now as I am planning to write about that for my blog for the epilepsy blog relay on 19th March so watch this space.<br />
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But instead I will add some links to stories covering Kims success.<br />
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<a href="http://www.nursingtimes.net/news/workforce/epilepsy-specialist-midwife-wins-national-award/7003112.fullarticle#.VuGB-anQefc.twitter">Epilepsy nurse Kim Morley revealed as ‘mums’ midwife of the year’ - Nursing Times</a><br />
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<a href="http://www.mumsintheknow.co.uk/mums-midwife-of-the-year-2016/">Mums’ Midwife of the Year 2016 — We Meet The Winner - Mum's in the know</a><br />
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<a href="https://www.epilepsy.org.uk/news/news/epilepsy-action-s-healthe-mum-be-campaign-and-epilepsy-specialist-midwife-kim-morley-win">Epilepsy Action’s HealthE mum-to-be campaign and epilepsy specialist midwife Kim Morley win big at RCM awards - Epilepsy Action</a><br />
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<a href="https://www.epilepsysociety.org.uk/News/England-only-epilepsy-specialist-midwife-honoured-as-Midwife-of-the-Year-2016-09-03-2016#.VuSRj9ErGP9">England's only epilepsy specialist midwife honoured as Midwife of the Year 2016 - Epilepsy Society</a><div class="separator" style="clear: both; text-align: center;">
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<br />Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com0tag:blogger.com,1999:blog-5025111286980215209.post-88579855994429612862016-03-07T09:00:00.000+00:002016-03-07T09:00:10.903+00:00We're off to the midwife of the year awards tomorrowI nominated our epilepsy midwife Kim for the Emma's Diary women's midwife of the year awards and I am so thrilled that she won for our region and tomorrow we get to attend the awards ceremony to find out if she has won overall. It would be so fantastic if she did firstly because her knowledge and support is incredible and she deserves to be acknowledged. It would also be a fantastic way to get the issue of epilepsy and pregnancy into the media and bring it to the attention of midwives across the country. Even if it just means that a few midwifes decide to read a little bit more about epilepsy that can only be a good thing for women with epilepsy across the country. So fingers crossed.<br />
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Epilepsy Action have written up our birth story and explained why we nominated Kim <a href="https://www.epilepsy.org.uk/news/features/award-winning-midwife-kim-morley-s-specialist-epilepsy-and-pregnancy-knowledge-gave">here</a>, but I'm going to share the article below as it sums it all up perfectly.<br />
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<span style="font-size: large;"><strong>Award-winning midwife, Kim Morley’s specialist epilepsy and pregnancy knowledge gave new mum a better second birth</strong></span><br />
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Clair Cobbold had a very traumatic first birth. Despite wanting a second baby, she didn’t know if she could bear another experience like that. She tells <em>Epilepsy</em> <em>Today</em> how midwife Kim Morley gave her the confidence for a second baby.<br />
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Ahead of the RCM Annual Midwifery Awards ceremony on March 8, Clair Cobbold explains why Kim Morley is a very worthy winner of the South of England’s Midwife of the Year 2016 award, and nominee for the Midwife of the Year award.</div>
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“I was diagnosed with epilepsy 12 years ago when I was 19. It was just after I’d started university that I had a couple of tonic-clonic seizures.</div>
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“It took a long time to get the correct diagnosis, as the general neurologists I saw while at university and after returning home didn't recognise I was also having focal seizures. After starting medication, my tonic-clonic seizures went from one a month to one a year.</div>
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<a href="https://www.epilepsy.org.uk/sites/epilepsy/files/epilepsy-today/2015-03/ClairRileyBenji.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" border="0" height="300" src="https://www.epilepsy.org.uk/sites/epilepsy/files/epilepsy-today/2015-03/ClairRileyBenji.png" style="margin-top: 5px; vertical-align: middle;" width="195" /></a>“Eventually, I was referred to Queens Square in London where they ran more tests and found I had temporal lobe epilepsy. I get focal seizures, which are like a feeling of anxiety sweeping over me and they can sometimes alter my vision. They only last a couple of seconds. I also get tonic-clonic seizures where I go very blue and it takes me a long time to recover from these.</div>
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“I changed medication about 18 months ago from lamotrigine to levetiracetam and for the first time since being diagnosed, I have been a whole year without having a seizure. So now I am reapplying for my driving licence back! I never thought this day would come and had accepted my seizures </div>
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were probably here to stay.</div>
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“I found being diagnosed with epilepsy at university hard. I felt it took away a lot of my independence and stopped me from doing the things I wanted. But I found a way to turn things around and became an Epilepsy Action Accredited Volunteer when I was 20. I have learned so much about epilepsy and now it's not as scary anymore. I don't let my epilepsy stop me anymore and just find ways to make it as safe as possible so I ride my horse and ski.”</div>
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<strong>Riley</strong></div>
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“Riley was born on June 3rd 2012 weighing 8lbs8oz. Throughout my pregnancy I saw a lot of health professionals because I was considered high risk. The local hospital where I was planning to have Riley wasn't used to dealing with women with epilepsy. They all came up with a plan that was very medicalised and controlled. I just went along with it because I didn't know any different and I wanted us to be safe.</div>
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“When I got to hospital I was already a long way through labour (9cm dilated) but they decided to follow the plan anyway. They gave me clobazam to reduce my risk of seizures and an epidural to control my pain, as they were worried that could trigger seizures.</div>
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“Both of these slowed my labour down and 12 hours later Riley still hadn't arrived and we had both become distressed. I was taken to theatre and she was delivered by forceps. It was very traumatic and my husband, Rich, wasn't told what was going on and thought we had died.</div>
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<tr><td style="text-align: center;"><em>Clair had a difficult experience of pregnancy and brith with Riley</em></td></tr>
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“After the delivery, I was in a lot of pain and very distressed and confused. The neurological team at the hospital decided to drop my epilepsy medication dose back down to my pre-pregnancy dose overnight putting me at risk of breakthrough seizures.</div>
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“Rich wasn't allowed to stay with me on the ward and Riley was placed in bed with me to feed for hours on end as she was very upset. This put her at a huge risk if I'd had a seizure, which, luckily, I didn't.</div>
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“Following the birth, my husband and I were both very upset and found those first few months really tough. I had some very low times in those first few months and looking back, I wish I'd found help. But we got through those tough times and then I loved being a mum. We put lots of safeguards in place to keep Riley safe if I had a seizure.</div>
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“We feel blessed that Riley doesn't seem to have been affected by my epilepsy medication or the seizure I had at the beginning of my pregnancy. She is now a healthy, happy three-year-old, and has grown up learning a lot about epilepsy. She knows exactly what to do if I have a seizure and is a pro at getting trains and buses!”</div>
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<strong>Meeting Kim</strong></div>
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<strong></strong> </div>
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<tr><td><img alt="" src="https://www.epilepsy.org.uk/sites/epilepsy/files/epilepsy-today/2015-03/Kim.png" style="display: block; margin: 5px auto;" /></td></tr>
<tr><td style="text-align: center;"><em>Kim Morley won the RCM South of England Midwife of the Year 2016 award</em></td></tr>
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“Epilepsy Action approached me to write for the pregnancy diaries and help with the HealthE mum-to-be campaign. I found that was a really positive thing for me. I wanted to make sure other women got more support during pregnancy and being a new mum than I did. Sharing my story seemed a good way to do that.</div>
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“It was, in fact, while helping with some pregnancy and parenting workshops for the campaign, that I first met Kim.</div>
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“A few years on, we started thinking about another child as we wanted Riley to have a brother or sister. But the idea of going through that trauma again was too much so we looked at other options. We looked into adoption, but unfortunately were rejected because Riley was too young. That was when I decided to have a chat with Kim to see if the birth experience could be different.”</div>
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<strong>Benji</strong></div>
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<strong></strong> </div>
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<tr><td><img alt="" height="300" src="https://www.epilepsy.org.uk/sites/epilepsy/files/epilepsy-today/2015-03/Benji.png" style="display: block; margin: 5px auto;" width="232" /></td></tr>
<tr><td style="text-align: center;"><em>Kim helped Clair gain the confidence <br />to have her second baby, Benji</em></td></tr>
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“Benji was born 2nd October 2015, weighing 9lbs. He is now nearly 5 months and doing well. I am breastfeeding him still and we are lucky because he sleeps a lot better than Riley did. He's a really happy, smiley baby and we feel really lucky to have him. Riley loves being a big sister and Benji thinks Riley's the best thing ever!</div>
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“Our birth experience with Benji couldn't have been any more different and most of that is due to Kim. The second time around, we just wanted things to be less traumatic and to be able to enjoy those first few months rather than battle our way through them.</div>
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</div>
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“The first time we travelled down to see Kim (it's about 2 hours away from us) she gave us so much of her time. She just gave us the opportunity to talk about what had happened and to cry.</div>
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“She said she thought we had both suffered from post-traumatic stress following Riley's birth. She said things didn't have to be like that and we did have options to make a second birth a more positive one.</div>
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</div>
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“Not long after that, I found out I was pregnant. I sent Kim a number of emails with questions and she just answered them in a calm reassuring way.</div>
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</div>
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“We went down to meet her again and put my birth plan in place. Kim's knowledge about epilepsy and pregnancy is so incredible, that we just felt we'd found someone who could answer all our questions.</div>
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“Kim never told us what to do, she gave the control back to us. She asked us what we wanted and gave us all the facts and her own insight and together we came up with a plan.</div>
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<tr><td><img alt="" src="https://www.epilepsy.org.uk/sites/epilepsy/files/epilepsy-today/2015-03/RileyBenji2.png" style="display: block; margin: 5px auto;" /></td></tr>
<tr><td style="text-align: center;"><em>Riley and Benji</em></td></tr>
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“My biggest concern was that I didn't want the birth to be overly medicalised; the less intervention the better. Kim said that because my epilepsy seemed to be pretty well controlled, there was no reason why I needed lots of intervention.</div>
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“Kim gave us the confidence and medical backing to go to our local hospital and say we wanted a natural birth with low intervention. Kim made me realise I didn't have to say yes to everything the doctors said. She gave me the confidence to enjoy my pregnancy rather than worrying what might happen because of my epilepsy.</div>
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“When it came to labour I stayed at home for most of it as Kim had helped me come up with strategies to reduce my anxiety. I got to the hospital already ready to push so all the midwife had to do was catch Benji, pretty much. I just had a little bit of gas and air during pushing but other than that no other intervention – no clobazam, no epidural and no IV.</div>
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“I remained active during my labour, and I can remember the whole thing. Afterwards, I was able to just sit and cuddle Benji and even have a cup of tea and a shower and Rich was there the whole time. It was such a positive experience and my recovery after was so much better.”</div>
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<strong>Midwife of the year</strong></div>
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<strong></strong> </div>
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“We were looking for a way to say thank you to Kim for all she did for us. When I saw the award, it seemed perfect. Without Kim, I don't know if we'd have felt confident enough to have another baby, and I wanted a way to say thank you for helping bring us Benji.</div>
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“I am so happy that she has won the south England region award! Kim doesn't realise how amazing she is. She is a very quiet person who doesn't shout about her achievements. And yet, she has made such a huge difference to the lives of so many women with epilepsy.</div>
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“She really deserves this award. I also hope it will highlight the need for better support for pregnant women with epilepsy to lead to better experiences for others.”</div>
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<img alt="" src="https://www.epilepsy.org.uk/sites/epilepsy/files/epilepsy-today/2016-02/Wholefam2.png" style="display: block; margin-left: auto; margin-right: auto;" /></div>
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<strong>RCM awards</strong></div>
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<strong></strong> </div>
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The RCM Annual Midwifery Awards 2016 will be held in London on March 8. The RCM will announce the winner of the Midwife of the Year award, for which Kim Morley is nominated. The Epilepsy Action HealthE mum-to-be campaign has also been shortlisted for an award at this event in the Best Charity Initiative category.</div>
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Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com2tag:blogger.com,1999:blog-5025111286980215209.post-38741972539465548772016-03-06T21:47:00.002+00:002016-03-06T21:52:13.866+00:00Adapting to life with two children!I can't believe I haven't posted since January, that's how quickly life with two children is flying by. So I feel I need to give a bit of an update on what has been going on over the next few months, so here goes.<br />
<br />
<strong>Life with two children</strong><br />
<br />
So it's taken some getting used to but I think we are now in a fairly good routine, Riley is at pre-school two mornings and one full day a week which means I get some time with Benji to really concentrate on him. It's still quite a challenge thinking about when Benji needs his feeds and nappy changes alongside when Riley needs to go to the toilet and pick ups from pre-school on the bus!<br />
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<a href="https://scontent-lhr3-1.xx.fbcdn.net/hphotos-xat1/v/t1.0-9/1937120_10153390497669352_1383242717307867384_n.jpg?oh=64a4483596737d8cc69613090defeac9&oe=575CA881" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="" aria-busy="false" aria-describedby="fbPhotosSnowliftCaption" border="0" class="spotlight" height="240" src="https://scontent-lhr3-1.xx.fbcdn.net/hphotos-xat1/v/t1.0-9/1937120_10153390497669352_1383242717307867384_n.jpg?oh=64a4483596737d8cc69613090defeac9&oe=575CA881" width="320" /></a></div>
<br />
<strong>Benji's development</strong><br />
<br />
<a href="https://scontent-lhr3-1.xx.fbcdn.net/hphotos-xtf1/v/t1.0-9/12814788_10100258444065675_779687922142400562_n.jpg?oh=1186a40da6a188c63a7a0b46beea990a&oe=575A4299" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" aria-busy="true" aria-describedby="fbPhotosSnowliftCaption" border="0" class="spotlight" height="320" src="https://scontent-lhr3-1.xx.fbcdn.net/hphotos-xtf1/v/t1.0-9/12814788_10100258444065675_779687922142400562_n.jpg?oh=1186a40da6a188c63a7a0b46beea990a&oe=575A4299" width="176" /></a>So Benji is 5 months old now and doing really well. He's growing really fast and weighs 16lbs 8oz now. He's very different from Riley in his personality, he seems to do a lot more thinking but is such a smiley chilled out baby. I just love seeing his smile when he wakes up in the morning. <br />
<br />
In the last week he has found his feet and is sitting independently for a few minutes at a time. He can also stand up holding onto things and loves to look out the window like Riley used to. He is also becoming much more co-ordinated with his hands and is able to grab toys and really investigate them.<br />
<br />
He also loves songs and actions, he's just really interested in the world and is becoming a proper little person. Can't imagine life without him around now.<br />
<br />
<br />
<strong>Breastfeeding and weaning</strong><br />
<br />
So I am still exclusively breastfeeding Benji and I have to say it's not been easy but I am glad I have persisted. I was quite ill for almost 3 weeks, I think I had the flu which then turned into a chest infection and I was really struggling to get enough fluids in me to keep my milk quality up so I just ended up dehydrated. I am also struggling to get enough calories to maintain my weight, the same thing happened with Riley. At the moment that's not a problem as it just means that I have lost all my baby weight and a bit extra which isn't a bad thing but I don't want to keep losing weight at this rate so I will be glad when Benji starts eating a bit. <br />
<br />
Which brings me onto weaning, we gave him a little bit of carrot today which he seemed quite interested in and he took a few sips of water from a sippy cup. We're going to take things nice and slowly as he's only 5 months so still early days but he is showing all the right signs, putting everything in his mouth, started sitting up and really interested in what we are eating.<br />
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<div style="text-align: center;">
<img alt="" aria-busy="true" aria-describedby="fbPhotosSnowliftCaption" class="spotlight" height="320" src="https://scontent-lhr3-1.xx.fbcdn.net/hphotos-xal1/t31.0-8/s960x960/12783763_197822640584814_1283478361663379601_o.jpg" width="299" /></div>
<br />
<strong>Sleep and mood</strong><br />
<br />
So Benji has started waking a bit more in the night, not to the same extent as Riley used to but he is usually up 2-3 times for feeds and sometimes is awake for an hour or 2 in the night. He does however settle himself and sleeps in his cot for naps in the day which to me is a miracle compared to the problems we had with Riley. I do struggle when I don't get more than 3 hours sleep in a row and it does effect my mood, partly I think because I just need quite a lot of sleep and partly because I then worry I might have a seizure and having been seizure free for 16 months I don't want to ruin that. I have also had to cut back on the running firstly because I wasn't well and then because I don't feel I'm getting enough sleep so it's a bit of a catch 22 because running helps my mood but if I haven't had enough sleep I don't want to risk having a seizure by running. I'm hoping to get back to it as soon as possible as still planning to run the 2017 London Marathon.<br />
<br />
As far as mood is concerned I feel really let down by my health visitors, I told both my GP and health visitor I was feeling low at my 6 week check. It took them 2 weeks to even call me to follow it up and then they just left a message which I lost and so I never called them back and yet no one ever followed it up. I was pretty high risk having struggled following my first pregnancy and also being on a medication which is linked to problems with mood. It just makes me upset that<em> </em>I asked for help and they only made one attempt to see if I was ok.<br />
<br />
<strong>Potty training</strong><br />
<br />
Potty training is still on going with Riley. It's hit and miss, and always seems to be more of a hit when there is something in it for her, so at the moment she gets points for each wee and poo she does and then she buys lego from the 'Daddy shop' each evening and the number of accidents has definitely reduced! She's still not great at telling us when she needs it but at least we are getting by, I just worry about what will happen when she starts school. Sometimes I get frustrated but I need to remember there is always the possibility there is something physically wrong because of my meds but that can't be investigated until she is older. So for now we just have to find a way to get by which I think we are doing.<br />
<br />
<strong>Driving</strong><br />
<br />
Well I am currently applying for my licence, I haven't done a great job of filling in the form and it's been sent back twice but hoping third time lucky. Part of me is excited to get some independence back and part of me is terrified of actually driving again after so long and also the thought that I could lose it again if I have another seizure... so not quite sure how I am feeling about it all at the moment.Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com0tag:blogger.com,1999:blog-5025111286980215209.post-84034018043989047282016-03-01T22:02:00.000+00:002016-03-06T22:02:35.490+00:00Epilepsy Blog Relay!<div class="separator" style="clear: both; text-align: justify;">
<span style="font-family: inherit;">So I am taking part in this months Epilepsy Blog Relay, but what does that mean? Well here's a bit of information about it and how you can get involved.</span><br />
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<a href="http://livingwellwithepilepsy.com/wp-content/uploads/2016/01/March-2016-EpilepsyBlogRelay-Badge1-300x300.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="" border="0" class="alignleft wp-image-13760 size-medium shareaholic-media-target-hover-state" height="300" sizes="(max-width: 300px) 100vw, 300px" src="http://livingwellwithepilepsy.com/wp-content/uploads/2016/01/March-2016-EpilepsyBlogRelay-Badge1-300x300.png" srcset="http://livingwellwithepilepsy.com/wp-content/uploads/2016/01/March-2016-EpilepsyBlogRelay-Badge1-150x150.png 150w, http://livingwellwithepilepsy.com/wp-content/uploads/2016/01/March-2016-EpilepsyBlogRelay-Badge1-300x300.png 300w, http://livingwellwithepilepsy.com/wp-content/uploads/2016/01/March-2016-EpilepsyBlogRelay-Badge1-768x768.png 768w, http://livingwellwithepilepsy.com/wp-content/uploads/2016/01/March-2016-EpilepsyBlogRelay-Badge1.png 800w" style="cursor: move;" unselectable="on" width="300" /></a></div>
<span style="font-family: inherit;"></span><br />
<span style="font-family: inherit;">Living Well With Epilepsy’s <strong>Epilepsy Blog Relay </strong>is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma.</span><br />
<span style="font-family: inherit;"></span><br />
<span style="font-family: inherit;">The concept is simple. 30 bloggers post on their own site, each taking one day of the month. In their post, participating bloggers are asked to acknowledge the blog relay with a link back to Living Well With Epilepsy and to promote the next day’s post.</span><br />
<span style="font-family: inherit;"></span><br />
<span style="font-family: inherit;">This month the epilepsy blog relay is running to support Purple day which is on 26th March and the blog relay is going to cover the following topics week by week.</span><br />
<span style="font-family: inherit;"></span><br />
<span style="font-family: inherit;"><strong>Week 1:</strong> Epilepsy in Everyday Life (Mar 1-7)<br /><strong>Week 2:</strong> Tech and Innovation in Epilepsy (Mar 8-14)<br /><strong>Week 3:</strong> Epilepsy and Families: Awareness Matters (Mar 15-21)<br /><strong>Week 4:</strong> Creativity and Epilepsy (Mar 22-28)</span><br />
<span style="font-family: inherit;"></span><br />
<span style="font-family: inherit;">I'll be writing for it on 19th March, I'm still working on what I am going to write about so watch this space.</span><br />
<span style="font-family: inherit;"></span><br />
<span style="font-family: inherit;">You can get involved on social media and spread the word using<strong> #epilepsyblogrelay</strong></span><br />
<strong></strong><br />
You can see all the participants and read their brilliant blog as they write them<a href="http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-mar-2016-participants"> here</a>.<br />
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Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com0tag:blogger.com,1999:blog-5025111286980215209.post-82056312354979859272016-01-01T21:53:00.001+00:002016-01-01T21:53:22.465+00:00Hello 2016 and the running shoes are back on!Tomorrow Benji will be three months old, he's sleeping pretty well (giving me a good 4 hour stretch most nights followed by 3 hours) so what better time to start running again than New Years day!<br />
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<a href="http://1.bp.blogspot.com/-gS_mqYhinnw/VobzyRRo6zI/AAAAAAAABJU/ZKUlubpYarM/s1600/20160101_154700%2B%25282%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="257" src="http://1.bp.blogspot.com/-gS_mqYhinnw/VobzyRRo6zI/AAAAAAAABJU/ZKUlubpYarM/s320/20160101_154700%2B%25282%2529.jpg" width="320" /></a></div>
<br />
Although saying that I don't want it to seem like this is a New Years resolution that will fall by the way side in a few days or weeks. Far from it, running is something which has always been important to me, at school it was my way of coping with the stress of life at that time. I always wanted to run the London Marathon and was working towards that goal when I was diagnosed with epilepsy.<br />
<br />
In fact it was while running that I had my first few seizures which really knocked my confidence at the time, made me fear running, but now while it makes getting back to running a little daunting it's also a big challenge which would prove my epilepsy was controlled once and for all.<br />
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Before getting pregnant with Benji I had started running again and it was going really well. An added benefit of running was that it seemed to counteract the negative effects that Keppra was having on my mood, another reason I am so keen to get back to running again.<br />
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So all in all the idea of getting my running shoes back on today was a really positive step and it felt really good to be out running again, I feel my mood lifted already after just one run. I'm not going to lie, it was tough and I know I have lost a lot of fitness but hopefully in 14 weeks I'll have built up to running 10k, that's where I was at when I was diagnosed with epilepsy 10 years ago.<br />
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After that I plan to start doing some park runs, working up to running the London parks half marathon next October and then the 2017 London Marathon - achieving an ambition I had long before being diagnosed with epilepsy but which has become all the more important as the years have passed.<br />
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And I'll be running the London Marathon to raise money for Epilepsy Action. I don't even have to think about it, they have given me so much support over the last 10 years, without them I wouldn't be in the position I am now. When I was first diagnosed it was at an Epilepsy Action event where an accredited volunteer (you know who you are) stood up and told his story, suddenly I saw a way in which I could turn this awful situation into something positive, into a way to help others. Becoming an accredited volunteer turned my life around at the time, it gave me a purpose.<br />
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Epilepsy Action has helped empower me to become more knowledgeable about my condition than most of the health professionals I come into contact with. They gave me the confidence to push for better care and the wonderful team I now have in London. Probable most importantly they introduced me to Kim, the epilepsy midwife who helped give us the confidence to try for a second child after such a traumatic first birth, who empowered us to take control of my second pregnancy and made it such a positive experience.<br />
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I want to do something to make sure that others like me get similar support and facing the huge challenge of running the London Marathon just makes perfect sense. Writing this post sets it in stone and hopefully if all goes well in just over a years time I'll be achieving a huge life goal while also raising money to help others with epilepsy gain the support they deserve.<br />
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So here's the reason I am running - for the two beautiful children we have been blessed with and the hope that others with epilepsy have the same support to start a family if that's what they want.<br />
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Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com0tag:blogger.com,1999:blog-5025111286980215209.post-3188447007523623752015-12-30T21:11:00.000+00:002016-01-01T21:12:50.935+00:00Benji's first Christmas and the end of 2015Benji's first Christmas turned out to be pretty great. Riley really got Christmas this year and it was just so magical to watch her face light up with all the magic of Christmas. We are starting to build our own family traditions, visiting the Christmas lights, Olympia and making church and the religious side of Christmas which is so important to me fun.<br />
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So here are a few Christmas photos, which sum up the excitement of the end of what has been a very eventful year with the arrival of Benji who really does make our little family complete.<br />
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Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com0tag:blogger.com,1999:blog-5025111286980215209.post-54745518562182843912015-12-16T10:18:00.001+00:002015-12-16T10:19:30.657+00:00Epilepsy and Pregnancy makes The Sunday Mail<p dir="ltr">Taking medication during pregnancy is always worrying but for some of us we have no choice which is why it is so important we have all the facts so we can make informed decisions.</p>
<p dir="ltr">I feel lucky that I was put on the safer drugs that carry the lowest risks in pregnancy and as a concequence it seems I have 2 healthy children.</p>
<p dir="ltr">But Epilim has been found to carry much greater risks both with birth defects and neurodevelopment  problems in children so why has it taken 40 years for this information to come out especially as ot was known when the drug was first licenced. </p>
<p dir="ltr">Now don't get me wrong I don't think Epilim should be band in women as I have friends who nothing else works for who don't want children. I don't think they should have to suffer with seizures and having a family is a person choice it's not what everyone wants so it shouldn't be presumed everyone wants kids.</p>
<p dir="ltr">But what is important isgirls and women are not put on Epilim as a first line drug and also the risk to a baby is made clear and effective contraception is given.</p>
<p dir="ltr">It's crucial women with epilepsy are given all the information and nothing is hidden from them so they can make truly informed decisions. That's why it's so good to see it in the papers - just hope all the truth comes out now about all the drugs.</p>
<p dir="ltr">If you want more information about the drug you are on then you can contact the UK epilepsy pregnancy register. It's also crucial to register with them if you are pregnant to make sure we have the best data on birth defects and how these drugs effect our children. Find out more here:</p>
<p dir="ltr"><a href="http://www.epilepsyandpregnancy.co.uk/">www.epilepsyandpregnancy.co.uk</a></p>
<div class="separator" style="clear: both; text-align: center;"> <a href="http://lh3.googleusercontent.com/-1gtsaR0oPZU/VnE6iYICNLI/AAAAAAAABFw/GinXkOiVD70/s1600/20151213_145743-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh3.googleusercontent.com/-1gtsaR0oPZU/VnE6iYICNLI/AAAAAAAABFw/GinXkOiVD70/s640/20151213_145743-1.jpg"> </a> </div>Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com0tag:blogger.com,1999:blog-5025111286980215209.post-84552633872824206702015-12-13T09:59:00.000+00:002015-12-16T13:11:47.242+00:00Riley loves the water ~ and now she can really swim!<div dir="ltr">
So proud of Riley - this term she swam 5 metres indepently (actually she can manage a width which is 7 metres). She just loves the water and next term will get to play with flippers and snorkels. We love aquatots :) Benji starts in January and because my seizures seem pretty controlled I'm going to take him. Very exciting.</div>
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Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com0tag:blogger.com,1999:blog-5025111286980215209.post-78630865743741570902015-11-30T09:23:00.001+00:002015-11-30T09:23:52.890+00:00A birthday blog! A year seizure free!<p dir="ltr">Today I am 31, nothing special just another year older... but today also marks 1 year completely seizure free. I still can't get my head around it as it was only 2 years ago that I came to terms with the fact my focal seizures may never be controlled. I can’t even remember the exact date of my last seizure just that it was in November last year.</p>
<p dir="ltr">So today marks the day I could technically drive again, not that I will because I still don't feel confident that it's controlled. Part of me thinks maybe it's because I was pregnant. Plus even though Benji sleeps better than Riley I still don't feel it's enough sleep and so don't feel safe to drive just yet.</p>
<p dir="ltr">In a few months when Benji is in his own room I will consider driving again but it's scary - I haven't driven in 6 years since my epilepsy was properly diagnosed as focal epilepsy. To just be handed your licence back brings mixed emotions - joy of course that I can have a bit more freedom but also fear of being able to drive and also losing that freedom again.</p>
<p dir="ltr">A lot to get my head round! But the main thing is I am now a year seizure free, the keppra looks like it's working, it's my birthday and the most amazing thing happened this morning. Riley woke up and said 'Happy Birthday Mummy' - she just remembered :) one happy mummy - the best present ever!</p>
Clarabella Simpkins!http://www.blogger.com/profile/07602079094715376103noreply@blogger.com1