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It's a year since I got sick, it's starting to hit home ....

(43 Posts)
weegiemum Tue 04-Dec-12 00:16:08

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.

SirBoobAlot Tue 04-Dec-12 00:19:41

<hugs>

I haven't got the same condition, and mine is not supposed to be progressive (though I feel like its getting worse). But I know how you feel. Just wanted to give you a hand to hold.

I'm sorry you're dealing with this. Its shit. And its not fucking fair.

weegiemum Tue 04-Dec-12 00:24:37

Aw sirboob I should have known it would be you!

Just feeling lonely and sorry for myself tonight (dh working).

SirBoobAlot Tue 04-Dec-12 00:28:02

Sorry, I moan an awful lot about being ill!!

I'm having a shit night too, have been put on strictly no pain killers to see if it has any effect on my newest problem. Though I'm guessing screaming / crying / not being able to sleep because my body is on fire isn't exactly the response he'll be looking for <weak smile>

When is DH home?

kiwigirl42 Tue 04-Dec-12 00:28:49

I have a chronic illness too, for almost 6 yrs ands its a grief process in early yrs. the loss of who you are and want to be. I cope by trying to accept that part of my life is over and taking each day as it comes without expectations. I am happy but not life I would choose for myself

weegiemum Tue 04-Dec-12 00:35:50

It's the loss of hope, of dreams that hits me hardest.

We'd been accepted to work with a charity doing community work in the slums in Caracas, Venezuela. I'd spent 2 years learning spanish! I'm a teacher, dh a doctor. It was our dream. But I couldn't manage, and we priced it - my treatment out there would have to be private. It's a pre-existing condition so not covered by insurance. We don't have shock $40,000 a month (yes really!) to pay for it. So we can't do it!

Life sucks sometimes!

Snazzyfeelingfestive Tue 04-Dec-12 00:36:54

Sorry this has happened to you. I have had chronic conditions for years now and it is so difficult to come to terms with the way the life you had has been taken away.

If you love to sing, are you singing now often, while you can fully enjoy it? I hope so.

weegiemum Tue 04-Dec-12 00:39:22

I am singing! I'm in a choir, and I lead a worship group at our church (I can do that sitting down!!). It's really uplifting, I'm terrified of when I can't (10 years or so probably).

Snazzyfeelingfestive Tue 04-Dec-12 00:43:57

I'm really glad to read that. Isn't there some research that says singing lifts the mood and produces good endorphins or something? Even more likely to work if you are singing something with real meaning for you.

Yes, the avenues you wanted to pursue, and can't, are hard to deal with. Un-MN hugs to you.

expatinscotland Tue 04-Dec-12 00:45:37

But that is 10 years from now, my friend! There is only today. That is all we have! And there is life. Where there is life, there are new dreams, new hopes, all available to the present. smile These are yours, there is life to make them, and that is good, oh, my friend, any life is good, I can promise you! ((())).

oranges Tue 04-Dec-12 00:46:38

I am so sorry weegiemum. Just one thing on health insurance. Look at a company called global healthcare. It covers expats and deals with pre existing medical conditions. Other specialist insurers do it too. You pay higher premiums but its not totally unaffordable. I hope you find a way through. It's shit. I know.

weegiemum Tue 04-Dec-12 00:51:21

Oh expat, I know (hugs)

I'm just feeling sorry for myself tonight, my feet are numb but weirdly painful too, I've taken my meds but can't sleep, dh is away (till next tuesday ) though we'll be over for the weekend. At Whistlefield. Maybe coffee in town??

Been a hard week. Kids off sick from school, poor Nellie Janet the hamster tried to hibernate in the cold and died (ds inconsolable). Still thinking of you right now, I'm sure you're reliving things!

expatinscotland Tue 04-Dec-12 00:53:06

Oh, no! Oh, sweetie! DEFINITELY a coffee! Absolutely.

Whinge away!

I have three words to cheer you up (hopefully) smile

Run Rachel, run grin

Did it work? I hope so.

I don't have any words of wisdom and can only imagine how you must feel.

weegiemum Tue 04-Dec-12 00:59:39

Terra you made me smile!

She was in the back garden at 7.30 am playing in the snow - it was still dark !!!

I love watching her run. When I think about it, I'm just so glad it's me that's permanently disabled, and not her!

expatinscotland Tue 04-Dec-12 01:00:37

smile. And mmm, CAKE!

Yay, it was all I could think of.
We would offer to take on any pain for our babies wouldn't we.
Would it be twee and shite to try and think of it like a trade off? You hurt so she doesn't?
I know that's not reality but would maybe help you? Feel free to tell me I'm talking baws, I may have been at the gin.

weegiemum Tue 04-Dec-12 01:09:55

Terra, that was perfect!

Expat, I was planning to bake my famous banana loaf to bring over. I could just come to yours? Did you get the card, dh said he'd posted it!

Good, I can go to bed now I know I didn't offend, I am so gonna sleep in for taking DD to nursery school.

Goodnight.

TanteRose Tue 04-Dec-12 01:40:26

oh weegie - sad

as expat says, there is today smile

sing lots, laugh lots and eat lots of cake grin

btw, MY banana loaf is well-famous too - will make it this evening (I have two very black bananas in the fridge) and think of you

MummyIsMagic79 Tue 04-Dec-12 02:36:44

Weegie - That sounds horrible, I'm so sorry. I haven't any decent advice other than to look at your children whenever you feel down or unhappy. I have done this during dark (though not as bad) times and it lifts me.

You have been kind to me on threads in the past and I wish you lots of love.

Welovecouscous Tue 04-Dec-12 02:41:18

Weegie I am so sorry you have to put up with that sad

I do understand just a little because I had major surgery this year and it was do hard being unwell and not being able to pick up DS.

Huge hugs in case they help and a cup of brew

I hope you are getting some sleep now

SirBoobAlot Tue 04-Dec-12 08:38:45

How are you feeling this morning Weegie?

magso Tue 04-Dec-12 13:06:45

Oh Weegie ((hugs)) !
Not much I can say, other than I understand (the loss and grief) and you have a perfect right to feel startled and saddened by all that has happened to you. Thats a pretty catatrophic hand you've been handed. Living in the moment is all we can do.
Glad you can sing!

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