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 :)