on 25 November last year I visited a friend who was in hospital as her daughter was ill. Walking to the car later, I felt dizzy, but thought I was just tired.
It got worse, I couldn't get out of bed by mid December. We thought (and so did GP) that I had a nasty ear infection, I got antibiotics.
On Jan 2 I fell on the stairs, got taken in to hospital. Had several weeks of tests (I gave 17 blood tubes!), lumbar puncture, MRI, CT, pet, ultrasound, nerve conduction tests. By Jan I'd lost all sensation in my hands, feet and face, lost my balance, also my proprioception (position sense. I don't know where my limbs are if I'm not looking. I can't touch my nose or clap my hands with my eyes closed. I fall over if I close my eyes - or pull a top over my head!)
Tests came back - I've got something called CIDP - Chronic Inflammatory Demyelinating Polyradiculoneuropathy. Since Feb ive been in hospital every 4 weeks for an immunoglobulin drip, as it's a problem with my immune system - when I got the ear infection, my White blood cells attacked my own nerves instead of the bugs!
I'm disabled - have a wheelchair, a walking stick, a blue badge, get DLA.
I hate it. This has been a crap year, and it's slowly progressive even with treatment, so it's only going to get worse. Eventually I won't be able to walk at all. It will affect my voice (and I love to sing!) and eventually my breathing.
I'm just putting this out as a rant. I've got an amazing dh, 3 gorgeous children, a job I can still do and that I love. I don't want to be disabled. It's shit.
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General health
It's a year since I got sick, it's starting to hit home ....
42 replies
weegiemum · 04/12/2012 00:16
OP posts:
Welovecouscous ·
04/12/2012 02:41
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