Saturday 31 May 2014

Sleep ~ finally getting there!

Sleep... it has been a long hard slog but touch wood Riley is now settling to sleep on her own and usually sleeps through from 8pm til 7am... touch wood.  Sleeping in the day is hit and miss but I can live with that.

I thought I would share a couple of little things which have helped us on the journey to a good nights sleep...

Ok first blackout blinds - we bought easyblackout blinds which basically Velcro onto the window frame.

The second thing was clips to keep her sheet in place... it sounds silly but when she's screaming because she doesn't want to sleep or just wriggling in her sleep, the sheet comes off and she ends up sleeping on the waterproof mattress.  Her cot is an odd size so fitted sheets don't fit.  So we got these clips and they are amazing!

Wednesday 21 May 2014

It's National Epilepsy Week

This year Epilepsy Action are asking what it’s really like to be diagnosed with epilepsy and letting you know what support is available.

So I thought I would try and answer that question.... 'what is it really like to be diagnosed?'

In one word...  SCARY. It was scary for me, scary for the people closest to me and scary for the people seeing me have a seizure.

It seems a long time ago now, I've been diagnosed with epilepsy for around 10 years, but I probably had epilepsy my whole life, it's just I only suffered focal seizures until 10 years ago.  But I still remember those first few months, a blur on one hand because of the seizures and yet a time I will never forget.

I remember being told it was epilepsy and being told I couldn't drive anymore and just bursting in to tears.  In fact I did a lot of crying in those first few months, crying because I woke up from a seizure confused, crying because friends didn't want to know me anymore, crying because of the side effects of the drugs...

But as the months and years have passed and my seizures have come and gone with no rhyme or reason it has become part of life, part of me and I have learnt to accept it.  That doesn't mean I'm not still scared, the fact I could have a seizure at anytime is scary, I have just learnt to manage that fear and put it to the back of my mind most of the time so I can get on with living life to the full :)

The most important thing is to find support, I am so lucky to have my wonderful family, friends and neighbours.  

The second most important thing is to find out all you can about your condition that way you can advocate for yourself, sadly doctors are not always right and by learning as much as you can you can find the one who knows more than you do and who you feel safe in the care of.  It has taken a while but I feel very lucky to have my epilepsy specialist and the nurses at Queen's Square looking after me.

Wednesday 14 May 2014

The ups and downs of epilepsy awareness talks

Giving epilepsy presentations is a strange thing sometimes.  I get quite nervous when I do them, but I think they usually go quite well.  But it is amazing how the audience makes such a huge difference. Sometimes the room is filled with people who would rather not be there but have been made to go by a manager!
But this afternoon I went to a really inspiring school who truly wanted to do as much as they can to support a little boy who had what sounded like quite severe epilepsy.   They were working so hard to give him as much independence as possible while keeping him safe considering everything from reading time (where he often fell asleep) to going to the toilet.
I always find it easier to answer people’s questions rather than just talk at them and they asked so many questions mainly about how what they had heard could impact on the boy himself.  They are in contact with the little boy’s consultant it gives them a huge opportunity to help him and I think the training left them with 2 key points which I think are important for everyone:
  •         Know what it normal for the person so you know when to seek help
  •         Know what’s important to monitor both from a seizure point of view and also the medication side effects.

It really gave me hope that trying to raise awareness of epilepsy is making the world better for people facing its challenges even if it is just one person at a time.

Wednesday 7 May 2014

Getting Riley into Horses early!

On Saturday we went on a girly day out to Badminton Horse Trials, my mum, Riley and me (3 generations). The weather wasn’t amazing but somehow we seemed to find a break in the heavy showers and didn’t get too wet.  The wind was pretty bracing though.  And it struck me that walking the however many miles (mainly with Riley in the back carrier, but she walked a long way) there were children of all ages (even tiny babies) and I didn’t see a single child whingeing.  Basically I think kids brought up around horses are pretty tough and I’m so glad Riley is one of them.