Sunday, 16 October 2016
Date: Saturday 29th October 2016
Time: 2pm - 4pm
Venue: Horizon, Assembly Walk, Carshalton, Surrey, SM5 1JH
Items in the auction open for pre-bids (send bid by email to firstname.lastname@example.org)
2 hours in a professional recording studio with an award winning producer and leaving with a professional quality recording on CD or online
CV and interview advice by a professional recruitment consultant
Horse transport (up to 100miles) and groom for a day (excluding plating tails)
Linked in profile copywrite
5 hours of babysitting in the Redhill/Reigate area
Improvers ski lesson by professional ski instructor (at Brentwood ski slope, transport can be included)
3 hours of base guitar lessons
Cooking tutorial from a professional chef culminating in a restaurant quality 3 course meal in your own home
An amazing made to order cake from Little Blossoms Cakery (truly works of art)
Vintage China for an event for 30 people perfect for a baby shower or hen party
Fudge factory experience
Pony experience - spend half a day learning to care for and then ride a pony (children under 8 years)
Auction items available on the day only:
Transport to and from the airport
Beginners knitting lesson
Family meal including desert delivered hot to your door
1 to 1 make up lesson by professional make up artist
2 hours of ironing
Kids rainy day craft box
frozen slow cooker throw bags
2 hours of gardening
Meal for four people cooked in your own home
5 beginner piano lessons
We are also going to have a raffle on the day and raffle prizes so far include:
Family ticket to Godstone Farm
Afternoon tea for 2 at Edibles in Banstead
2 person ticket to Bockett's Farm
Garson's Farm gift voucher
Woodcote Green garden centre gift voucher
Free bowling at Tolworth Bowl
Mini canvas by the talented artist Jenny Greenland
£10 dry cleaning voucher for Banstead
1/2 case of wine
30 minute go karting session in Crawley
And much much more...
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!
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:
Monday, 3 October 2016
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Friday, 16 September 2016
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.
So 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... not sure exactly what I was thinking but all I can say is this last month has been a tough one.
Monday, 15 August 2016
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.
Pregnancy and the early days
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.
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.
So once they are home I though the guilt would pass, we have two healthy children we could get on with life.
Small problems start to show
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.
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…
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.
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.
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.
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.
Could it be the medication?
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.
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.
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.
What needs to change?
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.
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.
Thursday, 11 August 2016
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.
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.
Benji’s growing independence
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!
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!
Riley on the road to school
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.
Work and run
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.
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.
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.
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.
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.
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.
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.
Wednesday, 29 June 2016
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.
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!
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.
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.
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.
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.
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.
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 here) 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.
So the challenge begins, here we go!
Wednesday, 18 May 2016
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.
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 input.
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 this post about the importance of bringing epilepsy and death out of the shadows has kick started me into writing this.
Risks of Epilim (Sodium Valporate)
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.
The reason I am writing this is because women should be given all the information when making a choice about medication during pregnancy.
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.
Gender gap in treatment of generalised epilepsy
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.
Real Story ~ to raise awareness
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.
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.
SUDEP ~ the information everyone should have
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.
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.
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.
Epilim does carry a fairly substantial risk to a baby in pregnancy (you can find more information here) but uncontrolled epilepsy increases the mothers risk of SUDEP and that needs to be considered too (you can find more information on SUDEP here).
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.
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.
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.