Hi,
I like many others have loitered on this site for a LONG time. I’m not sure i’ve ever posted, but here goes. In summer 2007 I started to get the most almighty migrain ever but it wasn’t typical of my usual migrains, it was behind my eyes and so painful I wore sunglasses till night even the living room light drove me mad. It got so bad i was admitted to hospital with posible meningitis, I was discharged 4 days later told it was a virus and i’d be fine. By the end of that week i had slurred speach and problems balancing which at the start were so bad, I was accused of being drunk (by an old lady) while i walked my kids to school. It seemed to last for about 3 weeks then started to improve, but i was left with balance problems, not so that people would particularly notice but enough for me to have to sit to slip shoes on or get dressed. I had a neuro appointment and was told he thought it was MS. I had an MRI and evoked potentials and didn’t see another neuro for 6 months to get the results apparently he likes his holidays. He may as well have stayed on his holiday, when i saw him he said “It’s stress” and waited for us to leave, when we asked what could be causing it he said “do you want it to be something serious” sarcasticly.
After this I vowed i wouldn’t go back again, to feel humiliated that way again. So when i started to get more symptoms i ignored them even when everyone else can see, I feel like a fraud and that all of my symptoms are in my head. More so when on a day to day basis I can feel so different, some days are terrible and I’m so tired I take the kids to school then sleep all day till I fetch them again, I cant walk properly cause my leg feels like it’s not mine and it gets tighter and tighter the more i push to walk. I’m frightend to drive now cause I know I cant see properly, and no amount of glasses are going to fix the fact that if it’s moving I cant track it with my eye’s. I’ve been dragged kicking and screaming back to the doctor who again said “stress”, but my mum pushed for a neuro appointment and i went last week. It was strange because, I was releved that when he did the exam he picked up on things, I’d blown off, as they got better, like right arm weakness, the eyes thing and the numbness in my face. Now I dont want to go back, he was brilliant, I had blood tests and he’s booked me in for an MRI and the longest he was willing to leave it without seeing me again was 2 months. But and it’s a big but, what if there’s nothing there again, I know in my heart that the episode in 2007 was the first time, I know i can’t go on like this, but weirdly I’m more scared that it isn’t MS and I’m going nuts than the DX. It’s not normal for a 33 year old to have to take turns out of dances (I line dance, it’s what i can manage) and sit down for a while after a dance, when an 82 year old spins like a top and dances every dance that evening. It’s not normal to think your pressing the clutch down in the car and hearing the gears crunch because no matter how hard you try that leg aint moving. It’s not right that I’m so exhausted after just walking to the school that I need a nap. For god sake I’m 33!!! Today I took the shame and used my father-in-laws old mobility scooter to go to the school, I felt better for it but so embarressed cause everyone looks cause of my age i suppose, although physically it made me feel better, emotionally I want to crawl up a corner and die. I feel like I’m losing myself, every day a little bit more of my soul gets chipped away, when i cant do something or someone mentions something, I have always been independant and strong and now, I suppose for the first time I’m scared.
Joanne xxx
). I have 3 boys 2 of which are high functioning autistics, they are all pretty self sufficent in that, we always cooked together and they know how the washing machine works ect… My husband wants to leave work to “look after me” sweet of him but I’m having none of that, life has to go on and to be fair if I let him do that, I really would be rock bottom. No when the time comes it will be carers, for now I just need to manage my time and the things i do better to ensure, I can keep things as normal as possible for everyone.