Temporal lobe epilepsy and memory problems

I was reading the epilepsy professional magazine and found an article which explained how temporal lobe epilepsy (which is what they are pretty sure I have) can cause memory problems and often quite specific.  They say that it can make it difficult to remember names and often specific past events… so maybe all the problems I have remembering names is more than just me being useless a bit useless.

Christmas 2013

Christmas was amazing :) having a little person around makes things extra magical.  Riley loved it; she is now at an age where she is aware more of what is going on.  She doesn’t understand things like Father Christmas but she understood something exciting was going on.  She got very good at opening presents!

When my parents first came around I think with everyone turning up together with so many presents, it was all too much and she burst into tears!  But she soon settled into it and was running around with a huge smile on her face.  She got a kitchen which she loves and loads of Duplo which is great because the train she had which she absolutely loved was getting a bit repetitive!  Now she has a zoo to go with it.

It was a lovely Christmas, mum got me a swallow necklace to remember Grandad and also got the picture my friend Jenny painted of my Grandad’s tree framed.  Christmas is always a time full of mixed emotions when someone you love isn’t there anymore, but this is our second Christmas without him and I am now at a point where I’m remembering all the wonderful memories I have of him.

Horizon Church Christmas Fun

Yesterday we had our churches Christmas celebrations, my friend Emily organised ‘Muddles’ which is messy church and the hope is to reach out to families on the St.Helier estate.  It was fantastic; Riley went and made a wide range of works of art!  There were a few local families and hopefully they will tell their friends they had a good time and it will grow like that, it can be quite difficult to encourage people into a 'church'...  

Then in the evening we had carols by candlelight, we walked round nativity scenes singing a carol at each, the scenes had been painted and decorated by people at the church.  It had some very amusing moments; it made the nativity more real somehow, more on everyone’s level.  Riley stayed up for it and loved it, she has been up till 9ish a few times recently and seems to stay in a good mood and then just pass out when we put her in her cot!

I love going to our church, it feels like a true family, it accepts everyone, even if you don’t believe like Rich you are still made to feel so welcome.  My mum sort of summed it up; the people running the church are on a level with everyone else.  It’s not like they are looking down on the people they are helping.

Muddles happens once a month - the next one is Monday 26th January 2014 and is Superhero themed.  So if you fancy some arts and crafts fun come along to Horizon Church, Assembly Walk, Carshalton, SM5 1JH from 4-5.30pm. See you there!

Coping with side effects

So I have now increased my Lamotrigine to 500mg and I have to admit I’m struggling with it… I’m feeling really dizzy, not light headed dizzy but dizzy in a thick sort of way – difficult to explain!  I’ve also got a bit of a tremor started, not all the time, only when I try to do prise movements, I’ve had that before and I can live with it until June when I switch meds, but the dizziness… not sure I can cope with that.  I’m going to carry on for a few more weeks; sometimes it just takes a little while to adjust to a dose.  When I first started on Lamotrigine I used to have panic attacks at night, but they stopped after a while. It only happens in the morning, I think I need to make sure I take the doses exactly 12hours apart, rather than taking them at breakfast at about 8am and then before bed about 10pm… see if that helps.

So what now for the Meds?

So as for meds, I have put my Lamotrigine up to 500mg and touch wood seem to be tolerating it.  I have had a bit of a tremor at times, but I have had that before and I can live with it.  But I think it is time for a change of meds... the Lamotrigine has definitely made a difference, I was having them monthly and when my Lamotrigine got above 200mg they became yearly.  But since then I don't think things have changed much.

So in June when I next see the consultant I will change to Keppra.  I'm a bit nervous, I've heard a lot of negative stuff and apparently 1 in 10 people have changes in their mood... I hope that's not me.  I hope that my family will tell me if I become different.  I sort of feel that the Lamotrigine maybe helping with my mood too  I know it's used for bi-polar as a mood stabilisor, and I don't know enough about it to be able to say but somehow I feel less up and down since being on it.  I'm not in anyway saying I have bi-polar and I started Lamotrigine as a teenager when being up and down is normal.

I guess when you've been on a medication for more than a third of your life you start to question what you were like before... the side effects from medication are often negative but I guess sometime medication can help other things without you even knowing.  A med change is pretty scary to me, it's the first one and on top of all that stuff I'm worried about having seizures too!  But it makes sense and I know I can do it and that I have so much support from my family :)

Reflection on a Seizure

It has been a while since my last post.  I think with Christmas so close and trying to recover from the seizure, I've just been focused on other things.  But I wanted to write now in case I don't get a chance til after Christmas.

So... from an epilepsy point of view.  It has been the first time I've had one of my big seizures and had to carry on with pretty much everything in my life.  I'm not saying I didn't have such great help from my wonderful family and friends but I had to look after Riley and go to work.  I know so many people with epilepsy have a seizure and just carry on with the day and may have lots and lots, and I know I only have one every now and again.  But it takes me a while to feel like me again, I feel tired and down, maybe that's because my body hasn't become used to them.  Or maybe it's because I will just think I am becoming seizure free and then it is all taken away... and this is the 4th time that's happened, I guess it will take more than a year or even 2 seizure free for me to believe it is really controlled.  But then I suppose I have still been having the odd partial seizure so I wasn't completely seizure free, maybe if they are controlled I'll feel a bit more confident....

I don't want to let my epilepsy affect my life and the fact that I did carry on, go to work, care for Riley, makes me feel a bit proud of myself.  I know that may sound silly, it's just one seizure, but it made me know I can do it.  I'm not saying I was easy for my family, I think I was pretty difficult... but I did it, and they understood that :)

My church has given me a lot of hope and support too.  I feel very lucky to be involved in them, I feel like part of family.  This weekend I'm helping with messy church and then there's a carol service so I will talk about the church more after that :)

Well I suppose it was overdue ~ tonic-clonic seizure :(

On Sunday it happened.  I had a big tonic-clonic seizure, I was riding my horse at a sort of organised ride thing, and he’d been really strong so I was a bit stressed but he had started to calm down.  Then apparently he stood still and I fell off having a seizure.  It’s quite a miracle really I didn’t hurt myself more and Mojo was a star standing still, it could have ended a lot worse.

I almost ended up in an air ambulance, I think communications got crossed a bit, they couldn’t find us because we were in the middle of a field and they’d been told a girl had fallen off and was having a seizure… the fact it was the other way round made it slightly less serious… but anyway I am sooooo glad that didn’t happen, if there’s one thing worse than being sent off to hospital after a seizure it would be going to some London hospital in a helicopter!  Although don’t get me wrong the fact that they did all that is fantastic, makes you feel safe in the hands of the emergency services :)

Everyone was amazing, a friend from a long time ago happened to find me and put something under my head, my Mum was there and as always saved the day, someone I didn’t even know walked Mojo all the way home.  My uncle and aunt picked me up and then a family friend took me home and took Riley for a walk.  Rich was there when I got home, with a hug and has looked after me so much since then as well.  I am so lucky to have such wonderful family and friends.

So what now?  Well at the moment my brain feels a bit stuffed up, a little bit slow and my memory is awful.  My brain feels like it is gradually returning to normal but it’s taking a while and I have to admit it is frustrating me at work.  But this seizure has shattered a little bubble I have been in.  In a way I had started putting the last seizure down to being pregnant and was sort of thinking I’d been 4 years free of major seizures… but looks like that’s not the case, damn epilepsy for being so unpredictable.

I think it’s too soon for me to think about all the consequences.  But at the moment with our amazing holiday to America booked for the end of March I just don’t see how I can change my medication now, I don’t want to be on holiday in America either having more seizures or maybe even worse with major side effects from Keppra.  So in my brain I’m think maybe putting my Lamotrigine up to 500mg daily and then in April start a medication change.  Then Riley will be a bit older, it will be getting on for summer and just be more settled.  Hopefully I won’t have any more seizures before then or things could be different. At the moment I’m waiting for the epilepsy nurses in London to get back to me after they’ve talked to my specialist, there is no real rush, it’s not like it’s going away tomorrow, it’ll be a long time before I can even begin to think I might be controlled...

The other consequences I guess are, do I ride again, I mean I’m pretty sure I will ride again, but I’m not sure I want to ride on my own.  I think I need to get back on as soon as possible; it’s playing on my mind.  And then there is skiing in America… I just don’t know what to do… right now Sunday is still in my mind and it scares me a bit, but in a month maybe I will feel differently about it.  We will have to wait and see how I feel, and more to the point wait and see if I can get travel insurance.

I’ve called the epilepsy nurses at my London hospital, I am so so thankful for them and the ability to have someone to contact when things do go wrong.  They are speaking to my specialist over the next couple of days and will then get back to me; hopefully by that time my brain will have recovered some more and I’ll be able to think straight.  But for now I need to keep going with life and try to rest as much as possible which is easily said but Riley has decided now would be a good time to stop sleeping through the night!

My neurology appointment ~ all is good :)

So as I said my neurology appointment was on Wednesday as I thought not much was said really.  Things are all settled which is good so we decided that we wouldn’t change anything at the moment.  Maybe after we’ve had another baby if we want one.  The problems I have with my stomach I can live with and so it seemed easiest just to stay on the Lamotrigine for the foreseeable future.  I'm going to have a chat with my GP about the long term side effects of Movicol but I think it is ok to use long term and I'm also going to have another try at coming off it, will stop the Folic Acid and vitamin D and then be good, no tea, lots of water and see what happens...

But the good thing is it would seem things are settled and in the future when Riley is a bit bigger and we have decided on whether we want another baby we can rethink.  I'm going to continue to see the specialist 6 monthly which is a relief because I am so thankful for the fantastic care I now get I don't want to go back to how things were before, where if things went wrong I had no one to turn to...

Neuro appointment on Wednesday...

On Wednesday it's my neurology appointment in London with my lovely specialist.  I feel so lucky to have such great medical care now.  I don't really know what to expect, I.  I'm still having the odd occasional small seizure but it's be over 2 years since my last seizure which happened when I was pregnant.  So I don't think changing my meds makes any sense.

The lamotrigine seems to affect my stomach but I can manage that with Movicol and it might not be the lamotrigine anyway, it could be the folic acid or vitamin D although I have tried to stop these in the past and still had the same problems... who knows.  I also get a bit dizzy sometimes which I'm pretty sure is the meds as it is always worse if I take a dose before bed at say 10pm and then one early at say 6.30am when I was working really early...

But I can live with the small seizures and the side effects aren't that bad.  Changing meds means probably having more big seizures and even though I can just go back to being on Lamotrigine if it all goes wrong, things seem settled somehow right now (touch wood).  I don't want to change anything.

Rugby! reminds me of my Grandad :)

This hasn’t got a lot to do with being a Mum but I heard this on the radio and it brought back mixed emotions… it has been 10 years since England beat Australia to win the rugby world cup.  In case you didn’t see it, with 26 seconds on the clock and the score 17-17 Johny Wilkinson kicked a drop goal taking England to a 20-17 win.

So why does it mean anything… firstly it makes me feel very old, can’t believe it was 10 years ago.  I’m not a super sports fan but that year I worked in a prep school as a gap year, basically supporting the teachers and mainly in the PE department.  They were really big on sport and I really got into rugby. That year was a turning point in my life.  At school I had been bullied, I’d been really unhappy and so shy.  That year I felt part of something; I was given real responsibility and just fitted in.  It built my self confidence and made me believe in myself.

England winning the world cup sort of framed the year and possibly more importantly brings back a lovely memory of my Grandad.  I watched the first half of the match at the school I worked at and then rushed back to my Grandad’s to watch the second half and was with him when they won.  That year I grew very close to my Grandad, I used to go up to ride my horse at a ridiculous hour in the morning and then have breakfast with him and spent a lot of time with him.  He also found the advert for the job in the first place.

So I guess the reason I mention it is that to me it was more than just a fantastic sporting achievement for this country but also reminds me of a turning point in my life, the point at which I started to believe in myself and on top of that reminds me of my grandad J

A home for a hedgehog

I haven't done a things to do post in ages and ages, so here goes.  Autumn is great, as the leaves turn they create beautiful colours and although often it is wet and stomping in wet leaves isn't very fun, it only takes a day or so of dry weather to make some fantastic crunchy leaves to stomp in.

Riley and me had great fun the other day stomping in and collecting leaves.  Riley is walking quite a long way now and although it may take a while to get anywhere it gives lots of oppertunities to explore our amazing world.

We took some bright coloured leaves home and with some PVA glue, a sprinkle of glitter and a bit of imagination we made a winter home for our hedgehog!

 So wrap up warm, get out and about in the Autumn leaves and see what you can create :)

I love being a Mummy :)

It's been a little while since I've said how much I love being a mummy :) so I wanted to put up a picture that shows just one reason why being a mum is so fantastic...

Calling all Dad's with Epilepsy

I was contacted  by a family who the father had epilepsy and wanted advice.  It was something which I had been thinking about for a while.  I have made this blog and network focus on women and while women have the added worry of the medication and seizures impacting on the baby.

But one of the biggest worries I had was actually looking after Riley and I know how much Rich is involved in Riley's life, if he had epilepsy that would be a huge worry for him and me.  I suppose it turned things around for me.  This needs to not only focus on women but also men who have epilepsy and are thinking of or already have started a family.

And also maybe more than that, maybe I didn't consider enough what an impact it has on Rich, of his worries and so this whole thing needs to look beyond just women.

So I guess the people I hope my story will help has grown, I want to reach women and men considering starting a family in the future, pregnant women and mothers and fathers with epilepsy and their partners... it has opened my mind to the fact that the issues of epilepsy and pregnancy are far bigger than I first considered!

Children in Need ~ tomorrow night

The charity I work for is going to be on Children in Need tomorrow night :)

The Children's Trust's play team are partly funded by Children in Need and tomorrow night there will be a father telling his very brave sons inspirational story to help raise money for Children in Need everywhere :)

So watch Children in Need tomorrow night from 7pm on BBC1

Bone Health in Epilepsy

Ok, Vitamin D has been an issue for me since I was first refered to London.  I found out I had a vitamin D deficency and started on a supplement which I just didn't get on with and didn't help anyway.  But then no-one knew what to do, my GPs would always say go out in the sun more... I would say I do but it's my epilepsy meds which cause it... they would just say oh and do very little.

So now I just take an over the counter vitamin D supplement and hope it's enough, so hearing from a consultant about it was brilliant.  So in a nutshell...

The main issue in bone health is Genetics, so something you really can't change.  But it is some of the other factors are what can be effected by some epilepsy medication... those factors are:

• increases the rate vitamin D is metabolised by your body
• reduces calcium uptake from the gut
• can effect hormones
• interfer with vitamin K metabolism
• direct effects on bone cell function
• increased risk of falls from seizures

But the most important thing is that the issue of epilepsy medication doesn't really increase your risk of oseteoprosis until later in life.

So basically what you can do is

• eat a healthy balanced diet
• don't drink too much or smoke
• exercise
• reduce your risk of falls e.g. lighting, regular eye checks
• take at least 400IU a day (blood levels should be above 50 in people with epilepsy)

So it answered quite a few of my questions and turns out I'm pretty much doing all I can.  Another interesting thing is that people with epilepsy do tend to be more aware of bone health and so do look after themselves better than much of the general population.

Epilepsy and Memory

Memory problems are common in people with epilepsy... the first question is why?

• caused by the epilepsy
• side effect of seizures
• side effect of drugs
• mood and anxiety

As I said in my earlier post about the weekend... my memory seems to be ok and my memory book at work picks up any of my weaknesses.  It is only remembering names that I struggle with but even that I get anxious over.  Today while working I'd stopped using my memory book, I thought maybe I could work without it.  But then everything got muddled up in my mind, I felt myself start to panic so I opened the book and wrote everything down and suddenly calmed down as I knew I wasn't going to forget the important things I needed to do.

But my memory problems are nothing compared to the amazing person I met at the epilepsy weekend for all.  Her name is Kate and it was great to meet someone who I just got along with so easily and understood the challenges which epilepsy can cause.  We had so much fun at the weekend, our rendition of Grease Summer Loving I think topped the whole weekend for everyone hehe!

But the most incredible thing about her was how bubbley and positive she was even though she had real memory challenges.  She wrote the following to help a parent on the forum that I work on but I wanted to share it on here as I think she is an amazing person and we could all learn a lot from her about living for today :)

My head injury happened in 1999 so I've had almost 15 years to develop them. God, it feels so strange seeing it written there - almost 15 years since the accident. They've flown by but at the same time I've changed so much in them. Acceptance has been a part of that. Accepting that it had happened, that it wasn't going to go away and drinking alcohol certainly wasn't going to make it go away. It would only make it worse. But it took 10 years and getting epilepsy because of it to finally make me realise that.

So in terms of the strategies using the grid method has been the most recent and useful addition. I have a diary which I keep on me at all times (attached to my bag with a lanyard because I'm always panicking that I've lost something!) I'm probably one of the most organised people when it comes to the contents of my bag but I panic something could have fallen out in the time since I last checked.

-I keep a ruled piece of paper in the middle of the week which I divide into 4 squares: Urgent, Important, Not Urgent, Not Importan and slot each thing I need to do into one of thoset. Like I'm sure i said, the things I need to do, or people have told me to do, get in such a tangle in my mind or get lost completely. It's also very difficult to prioritise what should come first. Using the grid really helps and I feel such a sense of accomplishment when everything from the lists has been crossed out - done!

Medication reminders. I learnt the hard way that keeping the drug levels in your blood stream consistent IS important. By that I mean it's important to take your medication at regular intervals. I take mine 3 times a day. Even when I want a lie in my reminder alarm's set for 7am. I wake (just about!) up, take the morning dose and go back to sleep.

I don't remember events after a certain point. I can't put an exact time on that but it's usually a couple of weeks. Photos help. Not that they'll necessarily bring back the memory of me actually being there but it's nice to have a record once the memory's gone. 

And also getting involved, going to events like this one. Accepting that you have the condition and not being ashamed of it. It's through that that I've met people like you. It's great to meet people who you've immediately got that epilepsy experience in common with. It's so important to hold your head up high as opposed to wallowing in pity you might feel. You can also share tips and really reassuring advice like I've had from you.

Epilepsy Weekend for All

The Epilepsy Action Weekend for All was amazing!  It was great to speak to some women thinking of starting a family in the future, mum's to be and new mum's.  But on top of that I learnt so much on a range of things which I will talk about over the coming days...

But I want to use this post to just talk about how the weekend turned out to be more than just an event to raise awareness and learn new information...

Spending the weekend with people who understand the emotions that surround having epilepsy, somehow I didn't worry so much about things.  I could be myself more in such a social situation.  The Saturday night they had a disco and karaoke.  I would never get up and sing and even dancing I'd feel self concious, but for some reason this weekend I was up there singing summer loving and dancing the conga... I don't exactly know why, whether it was because the people there just supported each other, encouraged each other.  Or whether there was a little part of me that thought, if I have a seizure here noone will care or judge and everyone will know what to do.

One of the consultants had an interesting piece of research which suggested that while quality of life was normal in those with complete seizure control, the level of quality of life in other with epilepsy didn't vary that much between people having the occasional seizure or those having them daily... I guess the thing is epilepsy is unpredictable and that means that it is always a worry, however small and I think maybe I worry about having a seizure 'now' more than I might let on.

Spending time with other people who face the same problems, side effects of drugs and the epilepsy itself, it got me thinking.  I have always worried about my memory but everyone tells me that there's nothing wrong with my memory and in most areas I would agree.

At uni I was sent to the dene of students to get some help with my memory as my lecturers saw it as a problem.  My main stratergy is I have a book, especially at work which says the things that I need to do.  It is more for confidence, basically by writing things in the book and then not having to look at it and still remembering it builds confidence but at the same time everything is written there if you need it to reduce anxiety.

But one thing I am aweful at (and I mean aweful) is remembering people's names... people say I am too... and maybe it is just normal and maybe it was as bad before I had epilepsy but I just don't remember it being such a problem... at the weekend (because people didn't mind me asking them over and over) I had to ask people there names upto 4 times to remember them... and it gets me really anxious which then doesn't help.  So I have decided I will write people's names down as I met them, I will have a book and I will then be able to look back and as I said before I maybe able to remember without looking at the book but if I can't it is there.

So the weekend made me reflect on what my epilepsy might be impacting on, to accept that.  But the most important part of the weekend is the friends I have made, the people who just accept me for who I am, I'd especially like to mention Stuart and Kate, you made my weekend fantastic.  It was my first weekend away from Riley and I couldn't of imagined a better way to spend it.  Thank you everyone :)

So as I said, over the next few posts (over the next few days) I will talk about some of the things covered during the weekend, including:

• pregnancy and parenting workshops
• anxiety and depression in epilepsy
• bone health in epilepsy
• memory (hopefully)
• mindfulness (hopefully)

But for now I will leave you with Kate and me singing, luckily for you there is no video... but you can hear our fantastic drumming HERE

Epilepsy ~ Depression and Anxiety

I thought I would start my sum up of the more information based side of the Epilepsy Action weekend by looking at Depression and Anxiety in Epilepsy.

Up to 40% of people with epilepsy will suffer from either depression or anxiety (or both) which is much higher than in the rest of the population...

So what could the causes be?

• Biological e.g. type of epilepsy, temperal or focal
• Personality
• Social issues e.g. impact on driving, work and family support
• Percieved stigma

I guess if I think about myself I don't think I suffer from depression but I think maybe I do suffer from anxiety to some extent.  I worry a lot and sometimes I can feel myself becoming paniced... but I have found if I just breath and then write a list of all the things I need to do it calms me down. 

I don't tend to panic about having a seizure but sometimes I worry about it, I think there is a slight difference between the two, worry I think you can live with and still function with, panic I think just takes over...

Clapham Junction Epilepsy Action Branch?

So... what about an Epilepsy Action Branch in Clapham?

Seems like a good place, Clapham Junction station does seem to be the gateway to almost everywhere...

Very early days but if you'd be interested in joining a South London branch, get in touch... would be great to get some interest to know it's worth a try!

claircaxton@hotmail.com

Our bodies are so resiliant!

Sometimes I think isn't it amazing what our bodies can cope with... we can have seizures, where our brains are overcome by electrical impulses, our bodies lose control, sometimes we fall and still we come back fighting, it may take a while or some people can have multiple a day... but we still function.

Then we fill our bodies with drugs to control these seizures, all drugs have side effects and for most of us we find one which help control the seizures with only get minor side effects... and we take them for years and years...

Our bodies are amazing, to go through all that and yet we still give us the chance to live our lives to the full... I think that's pretty amazing :)

Epilepsy Weekend ~ Mixed Feelings

Well it's the Epilepsy Action weekend for all in 2 days time.  I'm really looking forward to it but at the same time I'm a little bit nervous...

I've written something for the 15minute presentation I'm giving on my experiences and that's the bit I think I'm most nervous about, but hopefully it will go well.  I think I'm also a bit nervous about spending the weekend away from Riley, it will be the first night I have spent away from her and that comes with mixed feelings, it will be nice to have a whole 2 days doing something for me but at the same time I know I will miss her...

But the most exciting bit is that hopefully I'll meet lots of women thinking of being mum's, women who are pregnant and new mum's and will be able to start up some sort of network for mum's to support each other.  That's the plan but even just meeting a few women will be fantastic and I think I'm going to learn a lot from the midwife, consultant and epilepsy nurse, so that is exciting too.

I'm also going to be representing Youth Health Talk (which I have spoken about in one of my recent posts) but also the Brain Injury Hub which is the information resource which I am involved in at work.  I have never really talked much about the specifics of my job but I work for a charity called The Children's Trust which is supports children with brain injury and their families.  One of the services they provide is the Brain Injury Hub, an online parents resource, and I am the online community coordinator for that.

www.braininjuryhub.co.uk

There are workshops for young people with epilepsy and a creche at the weekend and so there maybe parents whose child has had a brain injury and suffers from epilepsy because of it. If premoting the hub there only helps one parent it is worth taking the information and talking to people about it.

This will be my last post before the weekend so I will let you know how it goes next week.  Hopefully I might meet a few of you who have been reading my blog.  The one thing I can't believe is how many people want to read my story and hear what I have to say on Twitter and I just want to say thank you so much for all your support and helping to spread information and support to as many women as possible.

Row, row, row your boat...

Riley loves singing songs and she's starting to get really good at the actions too.  Her favourite few are...

Wind the bobbin up
If your happy and you know it
Sleeping Bunnies (if you have never heard it, here's a yout tube video with actions!  All kids seem to love it!)

Sleeping Bunnies

And then there's the old classic, she loves to grab other children's hand and try to play row row row with them even if they don't want too!  Here's some alternative verses to make the constant repetition a little more bareable...

Row row row your boat...

Gently down the stream, merrily merrily merrily merrily life is but a dream
Gently down the stream, if you see a crocodile don't forget to scream
Gently down the river, if you see a polar bear don't forget to shiver
Gently down the creek, if you see a little mouse don't forget to squeak
Gently to the shore, and if you see a lion don't forget to roar
Gently to the land, if you see an octopus always shake his hand
Gently through the cave, if you see a jellyfish don't forget to wave
Gently across the sea, if you see Riley give her a kiss from me
Gently down the Nile, if you see a camel don’t forget to smile
Gently over the lagoon, if you look up to the sky you will see the moon
Gently out to sea, if you see a big blue whale invite him home to tea
Gently in the bath, if you see a tall giraffe, don’t forget to laugh

TV ~ In the Night Garden

Riley doesn't watch much TV.  I'm not obsessive about it, she can watch some TV, but I try to keep her busy with other things and as we like to get out and about so much it's not hard to avoid much TV.  That's another thing about not being able to drive it does tend to take longer to get places and so leaves less time hanging around the house!

One thing Riley does tend to watch is 'In the Night Garden' as it's on Cbeebies just before bedtime and after dinner.  A few days ago Riley was eating dinner a bit late and Cbeebies was on it the lounge.  If you have never watched in the night garden it begins with some twinkly stars with music and then a parent tracing a circle on a child's hand.

Anyway she was sitting eating her dinner when all of a sudden she put down her spoon and started tracing a circle with her finger on her hand.  I wondered what she was upto when I realised 'In the Night Garden' had started and she'd heard the music and started the actions...  maybe she's watched a bit too much of it!!!

But I'm going to put it out there... what if 'In the Night Garden' is a clever way of indoctrinating our children, maybe there's some hidden message in there and the next generation will be programmed like robots by Iggle Piggle, Makka Pakka and Upsy Daisy... or maybe not!!!

Tempertantrums!

Riley's definately developing her personality and she understands most of what we say, but she gets frustrated that we still don't always know what she is saying.

With that comes tempertantrums!  We had the first major one a few days ago over her dinner.  She'd been on antibiotics for a week before so I had given her the benfit of the doubt that maybe they'd upset her tummy so she didn't feel hungry so had been giving her fruit which seemed to be happy with.

She finished her antibiotics on the Tuesday, went to nursery on Wednesday and ate and ate and ate there and on Thursday at dinner time she just pushed her dinner away and pointed at the fridge.  Well I said there was nothing else and she could have a yogurt when she'd eaten her meal, so I put her down and she screamed and screamed and screamed.  I sat with her and spoke to her calmly so she knew I was there and when she calmed down a bit gave her a cuddle.  She then pointed at her dinner and proceeded to eat all her dinner and then a yogurt...

It was hard to stand my ground but I did it... I won that one, but I know there will be many more... some we will win, some we will lose!

Youth Heath Talk

I've never really talked about Youth Health Talk and it's a website I believe is really making a difference and something I have been involved in for a while now.

http://www.youthhealthtalk.org/Young_people_with_epilepsy/

It is a website made up of clips of young people talking about there experiences of health conditions, it aims to be a resource that tells people the fact around conditions in a real way giving people a better understanding of what it's like to actually live with a condition.

I first got involved when I was interviewed for an epilepsy module (see if you can find me!). I then was asked to be on the youth panel which helped shape the website giving ideas for new modules and the website design.

It's about to be relaunched which will be exciting.  There's also a site aimed at adults with health conditions called health talk and there are some videos on the epilepsy a couple of sections about women and pregnancy which are worth having a look at.

http://www.healthtalkonline.org/Nerves_and_brain/Epilepsy/Topic/1658/

http://www.healthtalkonline.org/Nerves_and_brain/Epilepsy/Topic/1659/

What's Riley been up to? Here goes...

Riley’s definitely walking now!  And she loves it!  She has got really fast and can get into extra trouble now and the things is she knows when she’s doing something she shouldn’t be doing because she gives you this huge cheeky grin!  And then you can’t help but find it funny most of the time!

The other good thing is she is getting much less clingy at toddler groups which is fantastic because she always used to just cling onto me and wouldn’t go off and play on her own.  She maybe a bit shy but she’s certainly rough and tough, she got hit by one of those plastic push along cars twice yesterday and she didn’t cry.  It’s good because you know if she does cry she’s actually hurt herself.

She’s had her first course of antibiotics as she has had a chest infection and I think considering she has been ill so many times is pretty good going!  She is such a good girl though, when we went to the doctors, he was running 30 minutes late so when we eventually got in there she sat quietly while he listened to her chest and then let him look in her ears and throat without any complaining.  He said she had a bit of a chest infection gave us a prescription, Riley said bye bye and we were in and out in about 5minutes!

What else… she has settled much better at nursery now.  The girls there say she makes them laugh because she chases all the boys around trying to hug and kiss them, but they don’t like it!  Not sure what that says about her!?!

London Epilepsy Weekend for All ~ 1st - 3rd November 2013

In a couple of weekends time it's the London Epilepsy Weekend for All and it looks fantastic.  It's a weekend full of presentations and workshops by professionals and people with epilepsy.  It will give people a chance to ask lots of questions and meet people in a relaxed environment.

It's for the whole weekend, people can go to one of both days, stay there overnight and even arive on the Friday and stay all weekend.

There's going to be information sessions on both days for women thinking about starting a family, pregnant women or new mum's.  There will be more on the Saturday as their will be a specialist epilepsy midwife there and a consultant, but I'm going to be there both days to share my experiences and answer question if I can.  There will be lots and lots of other useful information sessions but from a pregnancy and parenting point of view this is what is happening:

Saturday

11.30am to 12.10pm Kim Morley – Epilepsy specialist midwife.  Speaking on pregnancy planning, care and delivery; caring for your baby.
12.15pm to 12.30pm Clair Cobbold.  Epilepsy and motherhood – a personal perspective.
12.35pm to 1pm Dr Cock; Kim Morley and Clair Cobbold - question and answer session on epilepsy pregnancy and motherhood / fatherhood.
2pm - 3.30pm Pregnancy planning and management; care for your baby and a mums’ network with Kim Morley ESN and midwife and Clair Cobbold Epilepsy Action volunteer and a mother with epilepsy featured in the Pregnancy diaries.

Sunday

2pm to 3.30pm Pregnancy planning and management; care for your baby and a mums’ network with Shelley Brett Epilepsy Specialist Nurse and Clair Cobbold volunteer with Epilepsy Action and a mother with epilepsy featured in the award winning Pregnancy diaries.

Looks like a really great weekend for anyone interested in epilepsy.  I'm hoping it will be a chance to get lots of mum's and mum's to be with epilepsy together to spreead support and maybe start some sort of support network.  Hopefully see you there.  Click below to book your place:

https://www.epilepsy.org.uk/involved/information/weekend-for-all

Autumn is here!

Well I think Summer is over :( standing at the bus stop today with a cold wind blowing and drizzle coming down it made me remember why getting the bus isn't always so attractive.  It is in the Winter that I miss driving more, I think the worst bit is the part of the year, it a bit of a shock to the system it takes a bit of time to adjust.  Better get the winter clothes and waterproofs out then we'll be just fine!

But there is one point I would like to make and that is that drivers who think it's funny to splash people walking along the pavements are mean, but splashing someone pushing a buggy that is down right evil...

I will leave you with that thought!

Warrior Mum's ~ My story

My story is the feature of Michelle Daly's Warrior Mums blog today :) hoping that it's another way of my story helping more women with epilepsy.  There have been some wonderful comments, I don't feel like I've really done much, just told my story.  It's not a story full of drama but just about being a mum and overcoming the challenges epilepsy has thrown at me along the way... but if my story can even help just one other person then this is all worth doing :)

Have a look at Michelle's fantastic blog:

http://michelledaly.blogspot.co.uk/

Also keep an eye on the new page "other mums' experiences" I've added to my blog, there are some fantastic mum's writing for it as we speak.  If you'd like to share your experience, e-mail me:

claircaxton@hotmail.com

And she's off ~ finally she's walking!

Well she's done it, she's walking!  And now the fun begins :) she's getting pretty fast pretty quickly so she's keeping us on our toes.

It's lovely to see her getting about on her feet and she looks so proud of herself! She can get herself up from the floor now too so she's well and truely off.

I find babies walking so funny, they look so unbalanced and they have to concentrate so hard on it.  I find you can't help but smile as they waddle along :)

I'll leave you with a picture showing how proud she is of herself (and we're even more proud of her)

Epilepsy Awareness Presentation

I've been asked to give an epilepsy awareness presentation to some students and staff at a school in Maidstone.  Apparently it's quite a lot of people which is a bit daunting but will be really good to reach that many people and for me to build my confidence.

I'm not quite sure how I'm going to go about the whole thing, luckily I'm not doing it until January so I've got a while to figure it out!  Scary stuff!

It's World Smile Day!!!

"Do an act of kindness. Help one person smile"!

 

Anyone who knows me knows what I think about smiles :)

Never stop smiling, it truely can make a difference... if you're walking down the street and you smile at a complete stranger... do they smile back? If they do even if it's just for a second you spread just a little bit of happiness to them.  Smiling keeps you positive, even when things are really bad a little smile can help you cope.

As Sandi Thom said on her album... "Smile it Confuses People"!

P.S. I don't think you should only do kind things once a year but it's nice having a day devoted to acts of kindness and smiles :)

Nursery ~ finally she's settled

Well yesterday Riley was at nursery and she finally seems to be settling in J when I dropped her off she didn’t cry, well not while I was there.  They said she’d had a really great day and was starting to play with the other children and giving them kisses… she's even made a little friend :) She is now in Caterpillars, she’s evolved from being a Ladybird.

I think it helps I'm now working 9-5 it means she arrives in time for snack, then has lunch and then dinner at at 3.30, comes home and has her 2nd dinner at 6pm ~ so basically her day revolves around food!  I hope she doesn't become a comfort eater, will just have to make sure she's super active.

I think Riley is quite a shy child, she doesn’t seem to like going off to play at baby groups as much as a lot of the other children.  Hopefully her confidence will grow with time.  She’s not shy at home and with people she knows so it’s just strangers and in busy places which I can totally understand.

I have also noticed that her understanding is increasing every day.  I think she understands most of what we say, she certainly follows most instructions.  It’s nice to feel like she’s responding to you even if she doesn’t have much language to talk back (maybe that’s a good thing!).  I guess from now on we have to be much more careful what we say around her.

50 Things to do before your 11 and 3/4

50 Things to do before you’re 11 ¾ is amazing Riley loves the outdoors and it’s a way of really making the most of that.  Now we have our new carrier we’re off!  How many have you done?

1. Climb a tree

2. Roll down a really big hil

3. Camp out in the wild

4. Build a den

5. Skim a stone
6. Run around in the rain
7. Fly a kite
8. Catch a fish with a net
9. Eat an apple straight from a tree
10. Play conkers
11. Go on a really long bike ride
12. Make a trail with sticks
13. Make a mud pie
14. Dam a stream
15. Play in the snow
16. Make a daisy chain
17. Set up a snail race
18. Create some wild art
19. Play Pooh sticks
20. Jump over waves
21. Pick blackberries growing in the wild
22. Explore inside a tree
23. Visit a farm
24. Go on a walk barefoot
25. Make a grass trumpet
26. Hunt for fossils and bones
27. Go star gazing
28. Climb a huge hill
29. Explore a cave
30. Hold a scary beast
31. Hunt for bugs
32. Find some frogspawn
33. Catch a falling leaf
34. Track wild animals
35. Discover what’s in a pond
36. Make a home for a wild animal
37. Check out the crazy creatures in a rock pool
38. Bring up a butterfly
39. Catch a crab
40. Go on a nature walk at night
41. Plant it, grow it, eat it
42. Go swimming in the sea
43. Build a raft
44. Go bird watching
45. Find your way with a map and compass
46. Try rock climbing
47. Cook on a campfire
48. Learn to ride a horse
49. Find a geocache
50. Canoe down a river

Pintrest ~ my scrapbook

I’ve started looking into Pintrest and it seems like it could be really useful for pulling together all the fantastic mummy and epilepsy things I stumble upon and want to share on this blog but just don’t have the space or it just doesn’t look quite right.  So I’m going to put a link to it on here and you can all see what you think and hopefully it’ll give some ideas for things to do and information and support about general pregnancy and epilepsy in a fun and easy to look at way.  Click below and enjoy!

2 years seizure free :) but what does that mean to me?

Please don't get me wrong with this post... I feel really lucky to have gone 2 years without a major seizure, my epilepsy is pretty well controlled and I feel blessed for that.  Most of the time I'm really positive about it all.  But sometimes like I am sure everyone does I get that fear, this is just me writing that down.  So hope you don't mind...

It’s been 2 years now since my last major seizure, in fact over 2 years, the day came and went without me even noticing… it got me thinking what does that mean, the fact I no longer keep track of my seizure free time?

Is it because I haven’t been completely seizure free? I am still having the occasional partial seizure but I can live with them… it’s just when I have one it sort of scares me into thinking I might have a major seizure.  In a way at the moment I don’t feel confident enough in my seizure control to drive even if I did go a year with nothing, so on the bright side at least I still keep my disabled bus and rail card otherwise travel would cost an arm and a leg.  Yesterday I was on the bus and found out a return to Redhill about 30minutes away had gone up from £4.60 to over £6!

I read a blog the other day by a girl who had been in her car when she had her first seizure and by some miracle didn’t hurt anyone.  Her blog was really moving, it voiced what I always felt, that I could never trust myself enough to drive.  I thought it was just me being a bit pathetic feeling like I shouldn’t ever drive again but it turns out I am not alone.  Here’s a link to it:

http://tiffanykairos.com/releasing-the-keys-epilepsy-driving/

Or maybe it’s because I have gone 2 and a half years before without having a seizure and then had one for no good reason… maybe it just doesn’t mean much, maybe 3 years will be a big day… or maybe I just can’t trust my brain 100%, maybe there will always be a part of me that worries I could have one any moment and with no warning. 

I think for me the fear fades and my confidence grows as time goes on, the anniversaries don’t mean so much.

Pregnancy Diaries won Highly Commended at BMA awards!!!

So the pregnancy awards won a Highly Commended at the British Medical Associations Patient Information Awards.  The final verdict was...

"I'm positive this resource is like a breath of fresh air for women with epilepsy (planning to have a baby or pregnant). The images give the feeling that one should treat pregnancy as normal and healthy (despite the necessary extra health worries/checks). Reading this - I get the feeling there's light at the end of the tunnel. This book is very much about maintaining a good quality of life and enjoying pregnancy despite living with epilepsy."
 
And here are a few facts I was given which show how successful the campaign has been

• Over 3,000 copies of Pregnancy Diaries sent to women with epilepsy.
   

• 3,784 individual people have viewed the Pregnancy Diaries online.
   

• 1,377 HealthE mum-to-be resource packs requested and distributed to medical professionals. [These packs included at least 5 copies of the Pregnancy Diaries].
   

• Poster presentation on Epilepsy Action’s research regarding pregnancy and parenting and the Pregnancy Diaries at the International Epilepsy Congress in Montreal.
   

• So far 9 mums have become part of the Pregnancy Diaries online, and another two are currently writing their diaries and getting ready to join up.

I also got a lovely e-mail from Nicole at Epilepsy Action giving some really lovely feedback from Mums.  It makes it all seem worth while and I am so glad I have been able to help at least a few other women.

It has been amazing contacting women from all over the world on Twitter.  So what are my plans now?

Well I have a few ideas... I am getting involved in a pregnancy and parenting with epilepsy workshop at Epilepsy Action's weekend for all on the 1-3 November 2013 in London.  Here's a link to get more info about the day itself and I will post more when I know more about what's happening.  At the moment it would seem that it will probably be on the Saturday but I will be around both days :)

http://www.epilepsy.org.uk/involved/london-weekend-november-2012

I was also thinking of having a page on this blog for other women to tell their stories and add their contact details if they want.  If you are interested in adding something to the page then please e-mail me, is great to hear from other women.  My e-mail is:

claircaxton@hotmail.com