Sunday, 17 August 2014

Robin Williams

Usually when I hear a celebrity has died I think ‘that’s sad’ but then just get on with life.  But when I read Robin Williams died it made an impact, it made me stop and think.

So many of his films have had an impact on me: Mrs Doubtfire, Good Will Hunting and most of all Patch Adams.

"You treat a disease, you win, you lose. You treat a person and I guarantee you win"

Depression is such an awful thing.  It holds such a stigma.  It can destroy a life.  People struggle and struggle and just about cope and then something small can tip the whole balance.

It is something which I was becoming acutely aware of even before Robin Williams death. 

Epilepsy medication affects your mind, at the end of the day it aims to control the activity going on in your brain. Some medications like Lamotrigine are mood stabilisers, some like Keppra are linked with depression and mood swings.  So during medication changes it is so important to be aware of how you are feeling and talk about it.

The drugs can make you tired which makes everything seem that much more difficult and the risk of having a seizure at any time hangs over you.

It can be so confusing; it’s difficult to remember how you felt before starting a medication.  All you can do is give it time and keep talking to your family and the doctors.  The psychological side effects of medication are so much more difficult to cope with than physical ones.

It’s not surprising that mental health problems such as anxiety and depression are higher in people with epilepsy than in the general population.

I hope that Robin Williams can be remembered for everything he gave to the world and not for the fact he took his own life.  Through his work he touched so many people’s lives, brought smiles and tears to so many.  And from everything that the people closest to him say he was a generous and truly lovely person fighting such a difficult challenge.

I will always remember him, he has changed the way I look at the world and made the world that little bit better by making people think outside the box.

Friday, 15 August 2014

Epilepsy Weekend for All - Southend-on-Sea, Essex 2014

Yeap it's that time of year again!  I am so excited.  Really really looking forward to this :)

So what's happening this year?

Through workshops and discussion sessions, we will be looking at some of the many ways epilepsy can affect daily life. There will also be opportunities to chat with epilepsy professionals over a coffee. Topics will include:
  • Planning a family – pregnancy and parenting
  • Parents and carers – the challenges and joys of living with epilepsy
  • Adults – diagnosis and treatment, relationships, social life, achieving potential and managing risk
  • Ketogenic diet – find out more about this epilepsy treatment
  • Managing epilepsy – memory, mindfulness, coping with stress, sleeping well and medication issues
There's also loads going on for young people this year:

The challenge for young people over the weekend is to work together and support each other to create films, graphics, music and drama. Working with multi-media professionals you will learn new skills as you share your thoughts and feelings about epilepsy. You can choose from these options:
  • Drama – exploring living with epilepsy through performance
  • Podcasting – interviewing and recording
  • Graphics – designing and printing
  • Photography and videography – capturing your imagination
  • Editing for audio and video
  • DJ – mixing your choice of sounds
Information and discussion sessions:

  • For teenagers – relationships, alcohol, getting out and about safely, education, work...and play
  • Siblings – a chance to share experiences
Also happening:

  • Relax and enjoy a clothed massage
  • Family disco and karaoke (and we all know who the stars will be hehe!)
  • Keep in touch – photo wall and contact envelopes
  • Halloween fun – apple bobbing and snap apple
  • Creche
  • Face painting
This year the weekend is taking place at the Park Inn by Radisson Palace at Southend-on-Sea. Our special price includes your accommodation, meals and all of the Epilepsy Weekend for All activities. We hope you will join us - book today to be sure of your place!

Adult (18yrs and over): £60 each (day pass £25)
16yrs and 17yrs: £30 each (day pass £15)
Under 16yrs:  Free
Twin, double and family rooms are available. We also have a limited number of accessible rooms for those with mobility requirements. Single rooms are not available but we will pair single guests with another delegate of the same gender, or feel free to bring a friend.
Car parking is free but permits must be arranged in advance (residents only). There are excellent rail links, with Southend Victoria and Southend Central stations close by.
For more info and to book your place visit the Epilepsy Action website here

Tuesday, 12 August 2014

Our Adoption Adventure

Rich and I have been thinking long and hard about having another baby.  We want Riley to have a little brother or sister and another child would complete our family.

All our friends are now having second babies and so it is becoming more of a topic of conversation.  At the moment with my medication changes it wouldn't be the right time for us to try for another baby.

So it got us thinking, do we want to go through pregnancy and the first few months of having a tiny baby?  I didn't enjoy the first few months, not from an epilepsy point of view, but I just found it so so hard.

I wouldn't change having had a baby for the world; it is something I think every woman should be able to experience whether or not they have epilepsy.  I don’t want it to seem like I am being a hypocrite in doing all this.  In fact in a way I want it to prove that there is another way to have a family if you have epilepsy.  The fact is pregnancy isn't for everyone (whether or not you have epilepsy) and I don’t think we want to do it again especially when there is another option.

That’s why we started thinking about adoption. It doesn't matter to us whether I give birth to our child, it doesn't matter at what age they join our family, they will be loved just as Riley is and I hope we have a lot to offer a child who hasn't had the easiest start in life.  It’s actually really exciting and something which I think will make our family complete. It's a whole new adventure for us as a family.

We know it could be a long process and I hope we don’t fall at the first hurdle.  I hope my epilepsy doesn't stop us.  So I guess this in a way is a new chapter in our journey.  We've just started contacting some agencies and looking into the process.  We hope we can start the process in the New Year.  So I guess watch this space.

Saturday, 9 August 2014

Commonwealth Fun!

Riley doesn't watch a lot of TV but with the Commonwealth Games happening at the moment we've been watching some of the sports.  Riley has some favourites... her favourite is the swimming and it's funny because when she swims on a Sunday she's started touching her toes before she jumps in like doing a racing dive!

She also likes the running which is coming in handy as I can wear her out by saying run to the wall and back, ready steady go and off she goes with a huge grin on her face!

But the best bit is her forward roles... she loved watching the gymnastics and the next thing we knew she started doing forward roles and now she does them everywhere!!!


Thursday, 31 July 2014

The funny thing about memory

Ok, so I struggle with people's names, I mean really struggle and it has been shown that Temporal lobe epilepsy (like mine) affects that sort of memory.  It is something which makes me so so anxious and so something which I am very aware of.

I helped at mini camp at the pony club I used to go to and it was really strange. I managed to remember 7 children's names only being told them once.  It wasn't the child I could link the name to, it was the pony...

There must be something in that... I just wish I knew what and how I could use it day to day... other than making everyone ride around on a pony.

So here's Riley on a pony (so I never forget her name!)

Sorry it has been so long

I can't believe I haven't written anything for so long. Time just seems to be flying by and I guess quite a lot has been going on in my life.

I'm going to start with Riley and how amazing she is. At the moment she is just learning something new everyday.  The most amazing thing is how fast her speech is developing.  She was a bit behind in her speech when she turned 2 but it seems like she has just skipped the sticking 2 words together stage and is now talking in full sentences! Everyday she learns new words, I just can't keep up with her!

The second main thing going on is this meds change.  I am now 2 weeks away from being on the maintenance dose of Keppra and have started weaning off my Lamotrigine.  It's all going ok, no major seizures at the moment which is good.

I just feel so so tired though. It is very difficult to judge whether I'm feeling low because of the Keppra or just because I am so tired. I just can't be bothered sometimes and I have been a bit snappy at times but again I think it's just because I am tired.  The main thing is that should get better.  I think I just need to be patient and give it time.  (I have a lot more to write on this subject but I am tired and can't put it down in words right now).

I have had some little panic attack things and one focal seizure... things just seem a little unsettled at the moment but hopefully everything will be settled by Christmas time.

I'll leave you with a picture of Riley, can't believe how fast she is growing up.

Photo: We found the Gruffalo!

Sunday, 15 June 2014

Side effects ~ do we just get used to them?

So we all take these meds, everyday for the rest of our lives.  I can't remember what life was like before taking them, so how do I know whether I am having side effects?  Do we just get used to living with them?  

At the end of the day it's really hard to say I can't live with these side effects for the rest of my life unless they are really really bad... the tiredness, stomach problems and dizzyness, I CAN live with it but should I? How much is it affecting how I live life?

Anyway now I am starting Keppra it seems like it could be a new start, maybe my stomach problems will get better and I'll get seizure control... the idea of reducing my Lamotrigine in a few weeks time comes with mixed feelings... hope that it could be the one and fear because it could lead to more seizures.