I am 48, female and Crohns'd and receiving longterm disability to 2025. I
would argue that I have had symptoms all my life, but the docs only
diagnosed me when I was 32 and I had a panproctocolectomy a year later. It
was clear to me on the day of the diagnosis and on looking at the X-ray
pictures that I was going to lose my colon.
I found work after 3 years of illness, 2 major and 1 minor operation. I
worked from 1995 to 2005 whereupon I was operated on and they removed a
conglomerate tumour of the ileum and after which I developed short bowel
syndrome. I have not been able to work since despite 3-4 work trials.
I also have mild heart failure - tricuspid and mitral valve NYHA grade 1
and
aorta valve NYHA grade 0-1insufficience - due to carditis aka post
inflammatory damage. If you have had fevers, you might have had a bit of
carditis. My heart kept on stopping - sort of tripping up on itself - and
then restarting after a couple of seconds. I could hear my heart and it
impacted on the rest of my body to the point where my chest felt as though
it was reverberating after every stop start. My boss used to thump on the
table in his enthusiasm and I had to be careful that I didn't have my
elbows
or arms on the table otherwise I thought that the thumping was going to
give
me a heart attack.
Like yourself, I was continually struggling with the disease and trying to
keep up with my healthy peers. It took a long time to let go and resign
myself to not being able to work full time again. I have not discounted
ever
working again and I would like to do a couple of hours a day, but my
health
is not stable enough yet.
My health has not improved, but I have less stress since I gave up trying
to
get back to work. I was making myself and everyone else very unhappy - I
was
frustrated and my employer felt continually let down as I was becoming too
much work for them with no reward.
I think that you have to make a decision between dying on the job or
living
out the rest of your life, still struggling with the doctors and the
authorities, but having a whiff of some sort of quality of life with a lot
lower stress levels. This letting go takes a long time especially when you
have 20 or so years of working life left. Unlike yourself, here in Germany
I
was beholden to the authorities to get the disability pension and it is a
very demeaning and ugly process, where you are treated like a criminal and
faker trying to take money from the state.
I was 45 when I started to realise that the rest of my life was not going
to
go to plan. Believe you me, I know where you are at.
Losing your career has the same effect on one as losing a limb or a loved
one - one goes through a severe grieving process. I suspect that this is
what is happening to you. Is there any chance that you can see a
psychologist to be mentored through the process? If it helps - it helped
me
considerably?
I felt as though I was being bullied into giving my notice and felt very
helpless and very, very angry. If your doctors are recommending it, it
does
sound as though it will be for the best. If you are lucky, then after a
few
years your health might improve and nothing will stop you from going back
to
work. You might also be able to earn something on disability or plan your
own enterprise or take a distance-learning course eventually.
I am still hoping that my health will improve and making plans to work.
Vanny
"neetac" <neetac@[EMAIL PROTECTED]
> schrieb im Newsbeitrag
news:n159k.15330$IK1.9096@[EMAIL PROTECTED]
> 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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