I have had a lot on my mind lately. Recently, I attended a PIP assessment which was quite a horrific experience and surprise, surprise they turned me down claiming that I am not (in their eyes) disabled. My god, how I wish they were right!
Apparently, spending each and every day in constant pain and exhaustion is ‘normal’. My seizures that are completely out of my control are ‘normal’.
I would never wish this illness on anyone but I would really like one of these assessors to spend just one week with me. I would like them to see how most mornings when my alarm goes off, I sob at the thought of dragging my body out of bed. I would like them to see the times that my brain ‘forgets’ to tell my legs to work and I’m literally paralysed from the waist down all whilst trying to convince my 10 year old son (and myself) that ‘everything is going to be fine’. I would like them to see/feel the crippling pain in my head and my drooping and twitching face. The seizures that make my whole body feel like it’s on fire and drain away the miniscule amount of energy I have. The constant, relentless pain that I just have to live with every single day.
It all sounds very dramatic but sadly this is my reality, this is my ‘normal’ yet Mrs May and her ‘wonderful’ (sarcasm just in case you didn’t know 😂) government believe that I’m absolutely fine and dandy.
Yes of course, I am lucky that I can still work but my family are in severe financial difficulties as a result of me being unable to work full time. The assessment made me feel like a fraud. Having to prove to some snotty (sneezing and not washing hands) medic that I am ill just seems so derogatory and humiliating. There’s not a lot I can do, I could appeal the decision but what’s the point? I know that I am ill as do my family and friends. I don’t have any fight left in me.
I will try my best to focus on the positives. My family and friends are amazing. Thanks to the work of charities like FND Action and doctors who specialise in FND awareness is growing each day. The more that they learn, the more chances we have of reducing symptoms and making life more bearable. Perhaps one day, one of these ‘assessors’ will experience just how absolutely awful FND can be and then they will finally recognise it as a disability.
I will continue to live in hope that one day I will be well again.
Thanks for taking the time to read my story.