The 'Look' of disappointment

There are lots of aspects of epilepsy which I hate but I think possibly the worst is ‘The Look’.

 Maybe it’s just me but I have found that there is a certain look which people give you when they are risk assessing in their head how your epilepsy is going to impact on a situation they are in control of. 

I like to think my epilepsy won’t stop me from doing anything and I am always really open about my epilepsy, I have been very lucky because my family and friends have always been really supportive and understanding.  But it’s when you get into the world of businesses and the main reason for it I guess is the suing culture we now live in. 

So I’m talking about when I sat in my occupational health appointments at work and they say ‘sorry you aren’t safe to work with the children on your own in case you have a seizure’ and then at the gym when they said ‘sorry I don’t think it’s safe for you to use the equipment more than walking in case you have a seizure’.

 

So why do I bring this up now?   Well finally at our adoption appointment last week, they said we would be put forward straight away if it wasn’t for my epilepsy but ‘they’d have to speak to their manager’ accompanied by ‘the look’.   

The Look is also usually accompanied by ‘are you sure you don’t know what triggers my seizures and I have no warning?’ with a slight air of desperation.  I would give anything to know my triggers and to get a clear warning, but the fact is I don’t, asking me over and over isn’t going to change that. 

I suppose I should in a way feel good because ‘the look’ isn’t one of judgement, more one of disappointment… so I fit all the criteria for whatever they want really well, they just can’t say yes because I am too much of a risk. 

The thing is there is nothing I can do about the possibility I might have seizures (and even if they are now controlled on Keppra it will be years until anyone can really rely on that because my seizures are so far apart) so there is nothing I can do about ‘the look’ other than not to even try for these things, but I don't want to do that either.

I guess that’s why underemployment is so high in people with epilepsy… there’s only so much of ‘the look’ you can take.

Our little Welsh getaway

We managed to get away for a week to Wales.  We were really lucky with the weather; it didn’t rain the whole week we were away which was fantastic.  It was just so lovely to have some family time doing the things we love together.

We went back to Porthmadog where we went with my Grandad when I was just pregnant so it was a really special trip.  Some of you may be reading this without my back story so just a quick recap.  When I was 4 weeks pregnant I had a tonic-clonic seizure.  The week after we went away to Wales with my Grandad to explore where he used to go on holiday as a child.  I was very close to my Grandad and sadly he passed away 2 weeks before Riley was born which made the first few months quite difficult.

But our week there was amazing, we explored the beach and as Riley loves to tell everyone ‘caught crabs’! But seriously crabbing was so fun, I don’t know why I’d never done it before.  Just a tip, crabs love frankfurter sausages (not pepperami though).

I’ll let the photos tell the rest of the story :)

Getting the train to the top of the mountain

Roar!!!!!

 Fun at the beach

Riley loves animals

CRAFTY IDEA: We collected shells from Shell Island and made little presents to take home to everyone (just remember to boil the shells before you stick them together so they don't smell!).

Angel rays as Riley plays on Black Rock Sands, I'd like to think it's Grandad looking down on us enjoying the place he used to enjoy as a child.

And you can't go to the seaside without having an ice cream treat... yummy!

27 month check time

So Riley had her 27 month check and all is fine.  Her speech has really come on now and she is learning so quickly.  She comes out with things that just astonish me, it makes me think where or how did you learn that?

They talked about squints and we've already had an appointment at the eye hospital because she does have a slight squint, but her eyesight is fine so they are just monitoring.  As for eating and sleeping everything is fine with that.

The next hurdle is potty training and we have now bought a potty training book (someone should really write one which isn't so pink and cringe-worthy!). I'm not sure Riley is quite ready yet but hopefully in the next few months.  She sits on the potty a lot and we have had some success so that is a good start I think.

Here's a little picture of her playing with her train set.

Seizure Triggers

I sometimes sit and wonder, what triggers my seizures?  I have come up with many concepts over the last 10 years but alas I feel maybe my seizures just highlight the fact that we as human beings find patterns within coincidences.

My first 4 seizures occurred on a Wednesday afternoon... the first 3 happened 4 weeks apart, the 4th was 8 weeks after that... I know what you are thinking, must be the full moon thing right?  (OK maybe you weren't thinking that but it was my theory at the time)

Then I have had a few during or shortly after running... so maybe they are exercise induced?  But then I have had one when I was just sitting down.

I also seem to have them in the worst places, on my horse, on a chair lift, on a treadmill, walking upstairs... so my latest theory is maybe they are brought on by worrying that I'm going to have a seizure.  So I shouldn't think about it... but then I'm thinking about it more...

It is all so confusing and our brains are so complicated I don’t think I’ll ever know what triggers my seizures.

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.

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!

Prices:

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

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.