Monday, 16 May 2011

Epilepsy Awareness week: Information & empowerment

Sorry all, no food here. Safe to say I'm posting with a coffee and a bun though, and I'll see if I can find some gratuitous cake shots for you at the end.

This week is Epilepsy Awareness week, the Epilepsy Society where I am lucky enough to be treated have set the themes as education and empowerment. I am lucky these days, in that I am well controlled, I am compliant and I have an amazing Epileptoligist at the Epilepsy. Doctor Koeppe is my hero - is unfailing faith that I will be totally controlled, the beam when I said I was thinking about starting a family in a year or so. In his eyes nothing is impossible. Epilepsy is not a barrier to me achieving. Sometimes I need reminding of this.

I work, full time.  I am good at my job.
I take medication
I am a Guide and Brownie leader.
I swim
I do yoga
I love to bake (as well you know)
I walk.
I have annoyingly frizzy hair
I love nail polish
I wear glasses
I can do the clapping to Eidleweiss with my eyes shut
I have climbed the Sydney Harbour Bridge
I sleep a bit more than your average bear
I hate ironing

Epilepsy doesn't stop me living a perfectly normal life. I just adapt things occaisionally to help that happen. At home I have a non slip mat in the shower. Chairs that I can sit on at the cooker, I don't have a gas cooker, my hob has a safety setting to switch itself off. I have non slip grips under my rug. At work, I sometimes have a rest at lunchtime if the day is stressful or I am not sleeping. I ask for support when I need it. In Guiding I try to have an extra leader for ratios so I can have a sit down or a nap if I need one.

My friends are amazing. None judge me, treat me any differently for having a fluctuating health condition. At school this wasn't always the case, but with love and support y'know I eventually got through that. Being diagnosed was a slow and difficult process for me, but that was about 20 years ago, be demanding, ask for second opinions, and push. If you know something is wrong then keep asking questions.

Keep a seizure diary. What, when, how long, if you suspect there was a trigger what was it?

Some things I would say - please know what to do if someone around you has a seizure:

1. Stay calm.
2. Look around - is the person in a dangerous place? If not, don't move them. Move objects like furniture away from them.
3. Note the time the seizure starts.
4. Stay with them. If they don't collapse but seem blank or confused, gently guide them away from any danger. Speak quietly and calmly.
5. Cushion their head with something soft if they have collapsed to the ground.
6. Don't hold them down.
7. Don't put anything in their mouth.
8. Check the time again.
If a convulsive (shaking) seizure doesn't stop after 5 minutes, call for an ambulance.
9. After the seizure has stopped, put them into the Recovery position and check that their breathing is returning to normal. Gently check their mouth to see that nothing is blocking their airway such as food or false teeth.
If their breathing sounds difficult after the seizure has stopped, call for an ambulance.
10. Stay with them until they are fully recovered.
If they are injured, or they have another seizure without recovering fully from the first seizure, call for an ambulance.

If you want to know more about epilepsy - have a look at the Epilepsy Society's website.

My final thoughts are, that if you have epilepsy, adapt your life to live it as normally as possible. If you want to do something, work through how you can do it, don't dismiss it straight off. Be open with those around you, Epilepsy isn't something to be ashamed of. The more we talk about it, the more it's normalised. Don't be afraid of your condition, control it.

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