Sometimes I wish you could see epilepsy on the outside. The trouble I have when I get asked things like, What job do you do or where do you work….. well at the moment my answer has to be I don’t….. Everyone because of that thinks im one of these lazy bums who live off the state and don’t deserve to breathe or be part of the same airspace. They look at me as if im dirty, a scumbag who should be out earning a wage.
Well Its not for lack of trying. For 3 years I fought to get back to work. I went through assessment after assessment after assessment. I went to interviews with the hospital for work (i was a nurse) I went to assessments at the benefits place as I was told to go there by my dr…. whereas other people were there to try and get signed off for work and get benefit, I wanted them to tell me I could go back to work that I had made my life for the past 6 years including training ! It didn’t work. I did however get a little benefit… not much to live on especially compared to what I was receiving working but It was a conciliation and helped me with transport costs and things like the things I could do. To get to this point though there were forms and forms and forms. How anyone gets away with the benefit fraud that you see on TV astounds me.
Now things have changed (for the worse) with my health since the beginning I dont apply for jobs anymore… not until I can get a Drs letter saying I can work. I have tried to volunteer at charity shops (thrift stores for you USA readers) and places such like yet they wont allow it as they are worried Id sue them if i fell and hit my head on something in their shop. The world has gone mad. As Im at the point where I have been told I shouldnt be on my own at all I guess work in most places is out of the question but doesn’t stop me wanting it. My dream job would be somewhere I would be helping others. Probably something craft wise now Im really into craft. I wish I could work somewhere like the craft box… Crafting all day and all that it comes with doesnt bother me. To see peoples happy face when they create something is amazing and lovely.
Just today I had my cousin round and I set her up and taught her how to bling her own phone case…. the outcome is amazing which I will post when its dry !
So anyway looking “normal” on the outside can be difficult
Just the other day someone said to me “your looks don’t give you any sympathy” meaning well you look fine! I just stood there…. In my head I was saying “if you could see my insides, the pain I have and the struggles I’m going through I would be the ugliest thing you have ever seen, if seizures had a physical form what would they look like? if the pain and joints could speak what would they say?” I will never know those answers.
.. Lots of people out there think of epilepsy as having a seizure and getting back up and that’s it. Well it is and it isn’t… My seizure count last week was 12 and that’s just the big ones…. It’s difficult to count the small ones as sometimes I don’t know about them but the ones I know about ….. The count is about 80. I’ve gone through 1 portable cylinder and one large cylinder of oxygen and about 185 tablets.
I’m sitting here and my back hurts alot, I can feel twinges of pain on my ankles and my wrists. In fact if I move my wrist.. It cracks. My neck is sore and I’m tired. This is because the seizures really do take a toll on my joints, my muscles and me.
When i have a seizure i do try to just get up and start again sometimes i can sometimes i cant…. its not as easy as it may sound or look. tiredness is like a black heavy blanket that covers me and sometimes I can and sometimes I cant fight it. Now Seizures and epilepsy… There is no fighting with the Beast of epilepsy. – once a seizure decides its going to happen , that spark from one neuron missing the other one and landing somewhere it shouldn’t well that I can’t fight, I cant stop it, that is it. Sometimes I know its on its way and it gives me signs and sometimes it creeps up from behind and I have no idea until I wake up on the floor or in some hospital somewhere, friends sometimes strangers peering over me.
Just think of living life knowing that any second your body could be taken over and the next thing you know you could be in a hospital bed somewhere. Im NOT over exaggerating. on 19th July 2009 I came home from work and went to lay on the bed…. the next thing i knew it was a week later and I was in intensive care. That is the not knowing- the uncertaintuy of epilepsy.
I take a photo every day to remind me of that day….. why? because I don’t want to forget. – Epilepsy takes memory sometimes too. I lost a couple of weeks here and there and I don’t want that to happen again. My photos are my “insurance policy” so next time you tell me I take to many photos….. just think that I can’t rely on my brain to remember the good times like you can.
I’ve been fighting this fight for 22 coming up to 23 years in July. Not because I want to, or because I can, but because I don’t have a choice. Im not unhappy with my life though in fact I feel stronger for still being here today.