Regular readers will know that E is a glass half full kinda woman and surrounds me and drowns me in positivity. I thought it was rubbing off on me, but a few events from this last week make me wonder. I definitely think that I have a very different perception of my life than others seem to. I don’t know whether that’s because I’m the one living it or whether it’s because my mindset still isn’t great, but the perception is different.
On Friday I was sitting with the nurse at work because I was rather twitchy – having involuntary movements – I’d already spilt some tea, and then it seemed to be getting worse so reinforcements were brought in. Whilst I was sitting with the nurse I was getting more and more frustrated with my brain, whilst she was sitting there saying how amazing I was that I was able to do my job, and I didn’t let the epilepsy get in the way.
Today I went to an event which I hadn’t confirmed my attendance at, not knowing what my brain/mood would be like. Again there were people saying it was great I was there, and that I was doing really well. I walked home in tears thinking I shouldn’t have gone.
At the secondary school I went to there is now an award which is the ‘Helen Bagnall award for perseverance’ which my dad gave in recognition of the perseverance I put in at school when growing up with epilepsy.
BUT I’m not sure that is the case. I’m not sure any of it is the case. I definitely don’t see it like that. To me I’m just doing what needs to be done. I had to go to school, and I had to do the work. People have been surprised that I’ve been at work over the last few months, but in my head it has to be done. Unfortunately the epilepsy creates hurdles and makes it more difficult at times. Recently the epilepsy has stopped me from doing everything to the best of my ability and has hindered me. I’m not brave, I’m not special, I’m frustrated as anything.
I’ve written previously about not being defined by my disability, but it’s very difficult to think like that when it’s affecting your life and you feel that you’re not doing anything fully and that that then is letting other people down.
Don’t get me wrong, I am still feeling better and generally more like ‘me’ than I have done in some time BUT I am more aware this week that my perception of how I’m doing is very different to other people’s. I don’t think it necessarily matters, it’s just different and I don’t need to beat myself up for not seeing it in the same way.