I hope someone reads this as I just don’t know what else to do…
Basically, I woke up one morning in October last year and my joints ached like i was coming down with the flu… Then on the Thursday, I woke up and my knee didn’t feel right, it felt like it wouldn’t support my weight and my legs had pins and needles. I went to the A&E department (after visiting a walk in ctr and a GP who all told me not to worry and wait and see if it got better after the weekend) and they had a look at me and discovered that all the strength had gone from my leg and i had ‘low anal tone’ (not a pleasant experience)… They also sent me home after the hospital told them that they couldn’t admit me. Iwoke up on the Friday morning after a night of burning pain in my leg, and my left leg just didn’t work and i was dragging it along behind me like a zombie.
I went straight back to A&E who called an ambulance and they sent me to the hospital…After a week in there and three days of steroids, i was discharged with the promise of a follow up appt sometime between then and my death, lol. (As it was, the follow up appt was actually four months after i left hospital???)
I had some physio, and in the end i went private and was told (after a reeeeeeeeeeeeeallly long MRI) that i have had CIS (clinally isolated syndrome) and this had given me an inflammation on my spinal cord…
I was given Gabapentin for the pain and sent on my merry way home.
That was two months ago, and whilst my symptoms have improved, I still can’t walk very far without pain, i am shattered… no, EXHAUSTED after doing anything and when it gets to about 3pm,I hit a wall and become a brain dead moron. - Iwork full time and was recently promoted before this all kicked off. My work have been amazing, and they have let me work from home when i need to and have been so understanding with everything. But i just can’t keep this up anymore.
I am so tired all the time, to the detriment of my little boy who used to have a mum that could kick a football around with or mess about with! I’m 29 but i feel like i am 79, all hunched over and hobbly… I often just wonder whether this is it? WIll i ever go back to being 100%, I used to dance, I used to jog but now the most exercise i do is walk to the loo. lol.
I’m not sure if the Gabapentin is making me feel depressed, or whether i have lost the positivity that used to get me through…?
How long can a relapsy thing last? Can any kind of professional person tell me whether this is it? If this is how i am going to be from now then at least i can just adapt, rather than living in hope that i will wake up and be fine?
Crikey. just read that back and i sound really whiney. I promise i am not normally like that, but once i started typing, i wasn’t sure how to stop?
With CIS, there doesn’t seem to be anything that can be done to make me better… ? From what i have heard, it sounds like it is down to my body now to do the work?
I really hope that someone out there can offer words of wisdom. I don’t really talk about it to people and i keep trooping on with everytrhing like i used to, but i am reaching the end of my tether now and i feel i am doing myself more harm than good?
Answers on a postcard …? please???
Thank you for reading!..sorry if i bummed you out.