Oh you don’t look like you have anything wrong with you
You don’t look like you have a disability
Well wake up sunshine get your blinkers off and learn that all disabilities are not visable
I suffer with something called polyradiculopathy …… what’s that sounds like something made up right …… and this is what I have been told
Let’s break it down into simple man’s terms , my immune system is killing off my motor nerves the nerves that tell my brain how to make me move , seen a stick of Brussel Sprouts how they grow , that’s how my spine is – these are called haemangiomas or gummy bears to my friends.
The best part … no cure , the only thing they can do is either chemo or cut the blood supply off to the gummy bears .
There are days when the pain is there and I can cope , and then there are days like Tuesday where I couldn’t take any more, walking nearly killed me it’s like dragging a dead body tied to your leg , by the time I got home , sat down on the sofa the tears started .
Not just started but full on blown sobbing , crying for the life I lost, crying for the fact I can’t do what I used to be able to do the fact that I am having to let friends down after making plans to see them weeks ago and as soon as the date is nearer I have to bail.
So if you’re one of those people don’t look at me like I’m pulling a fast one , don’t treat me like an idiot , if you know me just be my friend.
I don’t know how long it’ll be before the nerves pack up and I end up paralysed , could happen later this year could be 10 years down the road , they have said that the only way they will know my future is for me to have the same symptoms as I did in 2012 , when an asian registrar came to my home and didn’t have a clue , instead of saying I don’t know what is going on I will have to get a senior GP round to see, no she left it for 5 months before referring me , what she should have done is had me admitted to hospital for neurological tests there and then so they could have seen what was causing the problems
So if ever you see a registrar ask for a 2nd opinion , that may save a lot of heartbreak
