I can’t upload the pic just now as this silly iPad isn’t keen on letting me… Though last month I did an interview and was front page of my local paper which ranges over 4 different places.
If you don’t know me or my story before, 6 months ago I woke up paralysed, I fell outta bed and couldn’t stand or walk or even getting my self up without help! Couldn’t feed myself, hold a cup, pull up a fleaesy cover… Nothing!. I got diagnosed with EM six years ago, and at the same time nerve damage to my sensory nerves, though the nerve damage never noticably effected me apart from strength, balance, sensation was a tiny bit odd etc… Though my EM has always been off the scale. For three years I have suffered with toe/feet sores and ulcers but again, nothing major! Then at the same time I became paralysed my bottom leg and feet where covered in open pus like infected sores. My mum had to do EVERYTHING, use her full strength to pull me up (and keep me up) if I fell, I was on the floor for more than an hour because I had no ability to help them, get me up!. SEVEN WEEKS I sat, in the same place (the couch) in the same room, and my EM neurologist didn’t eventually take me in because i was paralysed? Nope, that wasn’t an issue!! They took me in over my sores! Can you believe that?
When I was admitted, they gave me a zimmer frame to use, told me to go from that, to 2 crutches, to 1 crutch to walking, though it seemed impossible… I got an EMG testing which the girl told me there than a connected nerve was flat out dead, THE NEXT DAY the neurologist eventually got round to see me, and so coldly, with no sympathy told me - your nerve damage has deteriated, a nerve is unresponsive causing this… You will likley never walk again, you will likley deteriate in the future too - I said to her that I as seeing improvements, and her exact words where ‘no, your just coping’!! Then in the same sentence told me that she discovered my EM so no point in her seeing me again! Thank god my mum was there, cause she would have never believed she said all that like she did!.
When I got home, phsyiotherapy only saw me a few times… Me and my mum through pure determination re-trained me everyday with ZERO help! I fought through EM pain, swollen feet and legs, burning and obv being incapable of walking at all!
My goal was to be at some sort of walking stage my eighteenth… AND I DID IT! I’m now walking around my house in crutches, and can do my house stairs!! Can do my makeup too!! Lol. I will likley never be un-aided when walking again, and will be in a wheelchair when out for EM pain sakes aswell, though it still shows miracles CAN happen… And doctors? There useless, only YOU can fight the battle!. The best way to describe my nerve damage is, my brain isnt connected to my feet at all, I can’t walk without looking at them otherwise il stagger and fall.
I had this story in the paper and they also got EM across well too!! YEY! So who knows? Maybe it will help one person eh? But local people have been really kind and Intrested in EM when they see me about! So that’s good, right? It may only be a small part, but it’s still something! Also, please don’t do what I did, I let EM beat me before this and took my workin legs/feet for granted… Don’t let EM do it! Trust me, when something like this happens, you truly regret!
Hope you all are well xx