There is so much of me that is unseen. Even when I am in someone's face.... it can be like I am talking Chinese to them... people don't listen... or presume that the know me.... when the reality is they have no clue.... The story of my life really.
That is not however what I am writing about today. Some of you know already I have had a horrible few weeks changing my epilepsy drugs.
Pushing myself to the point of being drugged in order to prove to the doctor that I knew already that their suggested amount on the new drug was too high.
Thankfully its sorted now.... although its still early days...
There is still time to lose everything that I have fought hard for.
The thing is I fall within a small percentage of epileptics and therefore in one sense I am very fortunate but in another sense not being in the normal band can be difficult. People forget or don't always get that I still do things to adapt, or try and stay seizure free.
You just don't see it.
In recent weeks, knowing that I have had to adapt to new meds. I bought a new chain for the SOS talisman mum bought me as a teenager. I adjusted the strap and popped it on again for the first time in over 2 decades.
It was a pragmatic decision, realising that the likelihood of me collapsing, foaming at the mouth, losing control and potentially forgetting my name... was perhaps slightly higher than normal.. with different drugs going into me. Not only that perhaps 3 times the amount of drugs for a short period of time. But it is still a visual sign, I have not needed for a while.
It's made me aware again. Remembering seizures from years ago.
I always struggle on forms when it says Are you disabled? Well yeah I have a disability and yes if my job involves computers then yes it can affect my daily life... but mostly it does not . I have to declare it though but I would rather not have a guaranteed interview...
From the bus driver that said "You don't look disabled" when I showed him my pass years ago when I was not allowed to drive to the consultant a few years back analysing my CT scan after a fall.... totally amazed at my brain shape that has two "significant atrophies and an extra bit"
Bless him trying to explain the scan he actually said "if I had this scan and had to try and pick you out within a room I would not pick you out, I would look for someone with more pronounced learning disabilities.
He was so intrigued I think he forgot that I was still staring at the screen trying to comprehend the bit about significant atrophies... Back when I was first diagnosed there were no CT scans so I had never been aware of the atrophies... I wish I had asked for the ct to me emailed to me now.
The thing is when someone says "You're no right in the head.." I can genuinely say that is true, infact I am quite unique lol
I tried to go to a support group once, a helper at it had asked me to go but the truth was that I could not go again as others in the group were so less fortunate than I was, I found it hard to be in the room. I did not face as many challenges and I felt like I was rubbing salt in their wounds rather than being a positive help.
But its not the type that you grow out of... It's never gone away. I just try to take steps that avoid bad situations. Step away from the laptop, use remotes for the TV and in this Covid online area - I sometimes turn video off or use an overlay on my glasses.
As someone said recently
"It doesn't change you.... You are still you, but it might mean that other people have to adapt and take time to understand you better."
I rather like that.
Own who you are.
