Hi All,
Haven't been here for a while but looks like I'm in for a major change of
life.
I've had CD for about 10 years now and would be due to have my 20th
anniverary with my employer this september, but I don't think I'll make
it.
There's been talk a number of times about retiring me out on ill-health
grounds, more frequently in the last couple of years, and now it looks
like
it's really going to happen this time - I got the letter about instigating
the procedure this week. I had a major flare-up about 18 months ago and
haven't been quite right ever since. At the time of the flare, they
quadrupled my mesalazine (the medication I'd been on since being diagnosed
after they realized I couldn't handle the sulfer based ones), and added
prednisone, remicade infusions and immuran. Then for the following 12
months they fiddled about with the dosages, dropping some off and added
iron
infusions until finally as of december last year I was down to only the
immuran (250mg per day) which I've been on since then. I also take
folate,
zinc and have B12 injections (all of which I've had for years due to
malabsorbtion issues).
I've always had extremely urgent diarrhea but it's always settled into
reasonable predictable "clusters" during the day that with flexible
working
hours I could work around. However since this last flare that hasn't
happened. It may only be a half dozen times a day on a good day, but
they're all over the place and considering I still suffer at least 1
"accident" a week in my tiny little flat where I'm close to a loo that I
don't have to take my chances competing with anyone else for, I've been
missing a lot of work. Also I've had a couple of bad bouts of illness: a
gastro infection and later on a respitory infection where the illnesses
and
treating antibiotics really played havoc with my bowel habits. Then for
a
month my heart went berko on me resulting in blood tests, ECGs and a
halter
monitor. All of which could find no problem luckily, the consensus seemed
to be it was triggered by the infection and eventually it settled down on
it's own. But boy did it throw my already wonkey body rhythm out of whack
even more. I don't fall asleep before 4am no matter what I do, and
believe
me I've tried everything. So I'm exausted only getting a couple of hours
sleep a night. Then my body seems to revolt and I'll have a day where
sleep
for 12 hours straight even through alarms, neighbourhood noise etc.
The specialist told me that if my body has settled into a rhythm in the
past
it probably will again, I just need to get used the new medication (and a
steady dosage of it) and require a period of stress free good health for
everything to settle down. Obviously work doesn't want to wait though,
they
sent me off to the Government Medical Officer to get his opinion, which
came
back last week and wasn't very positive. So here I am looking down the
barrel of retirement on a superannuation illness pension at 39. All of
which is incredibly stressful and consequently, I've had a dreadful week
this week. I'm beginning to think, bugger it, just let it happen - surely
the once it's done, the stress of continually fighting keep my job (which
I'm really getting sick of) being gone maybe something will improve.
So I was wondering how may of you out there have given up working (either
forced or voluntarily) and does it make any difference to your health?
Thanks for "listening" to a long post.
Any advice or comments would be appreciated.
Neeta.
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