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Thinking of giving up work


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#1 winnie97

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Posted 10 November 2012 - 01:09 PM

Hi I was diagnosed with systemic sclerosis 4 years ago after several years of going back and forwards to the doctor. I was actually told by one doctor before my diagnosis that if she had a £ for everyone that came into her surgery saying they were tired and in pain she would be a very rich woman !!!! Then she told me to go to a spa for a weekend !!! 2 days later I collapsed and was found to be severely anaemic with a very under active thyroid; that was the beginning of all my conditions.

Now 4 years later I have so far been diagnosed with systemic sclerosis, under active thyroid ,diverticular disease, Raynaud's, Sjogrens, IBS , GERD, Fibromyalgia, chronic bursitis of the hip, and lumbar spondylosis.
Last year I had an operation for a shoulder impingement, the pain has recently returned in my shoulder so going back to see the ortho consultant. And just to finish things off I'm now going through an early menopause.
I am on 43 tablets a day apart from Saturday when it's 50 as I take my methotrexate then and on Monday it's 44 as that's the folic acid day and on top of the tablets I am also on daily artificial tears, saliva, nasal spray, and what I call industrial strength moisturiser.

I did work full time but now only work 3 days a week but am considering giving up altogether as I very rarely make 3 days. I'm in constant pain despite all the painkillers ( pain medication , paracetamol, amitripylene, a new one for nerve pain but I can't remember what it's called, and one other painkiller but can't remember it's name either) . I have no concentration, suffer brain fog , forget things, my hands are really bad at the moment all the joints hurt and the top knuckles are red but not hot, the tips of my fingers hurt if any pressure put on them e.g. typing, pushing phone keys, it's painful to grip and I have a very weak grip.

I walk with a stick because of balance problems and the pain in my hip, if I want to go to the shops I have to be pushed in a wheelchair as I can't walk round a shop due to pain and the exhaustion I would suffer even then 1/2 hr to 1hr is enough.

I currently get DLA at the highest rates for both.

Not sure how much longer I can continue at work; has anyone else finished work through ill health? And how do you go about it? I work for a local authority, I know that another lady who worked for them had fibromyalgia and they have so far refused to finish her even though she hasn't been to work for 3 years and won't be returning they said she has to hand in her notice . Any info would be great fully received.

#2 Joelf

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Posted 10 November 2012 - 02:31 PM

Hi Winnie,

I'm very sorry to hear about your worsening problems with the Scleroderma symptoms you're experiencing and I can see why you would consider retiring from your job.

I can't advise you from personal experience, but we do have a useful link here on employment and support allowance and also another couple of threads which discuss early retirement which I hope you'll find helpful.

I know we have other members in the UK who've retired through ill health, one of which is Amanda, and I'm sure that she and some of the others will be along to give you more first hand advice.

Kind regards,

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#3 Buttons

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Posted 11 November 2012 - 08:22 AM

Hi Winnie

I retired due to ill health and worked for a local authority as a teacher. One very important thing is not to just hand in your notice because that makes it difficult getting other benefits. I had the support of the Occupational health doctor, my general practitioner and consultant which does help; I had also been off work for about 9 months. I was just 52 when I got IHR and one of the most important things is to prove that all avenues of treatment have been tried and that of course you will not get better (no cure). It took me about 3 months to get it all sorted out and when that letter finally arrived it was a good feeling knowing that I could concentrate on improving things for me. I do feel like a different person because not having the stress of the job certainly does help with things like Raynauds etc.

Take Care

Buttons

#4 winnie97

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Posted 11 November 2012 - 10:37 AM

Hi, thanks for those replies, I'm reducing my hours again so that I will only work 2 1/2 days now, I think I'm just delaying the inevitable.

The council's occupational health doctor whom I see due to my massive amounts of time off sick, said at the last interview that the school I work for could do no more for me; I've been moved downstairs, have a disabled bay basically outside my classroom, I no longer do yard duty or dinner hall duty, I have a special chair and voice activated computer program that I got through access to work. So there is no more they can do to help with adjustments or accommodating my working hours so I think we're at the end of the road here. He said he would support me asking to reduce my hours, he also said he didn't know how I was managing to get to work at all, so hopefully he would be supportive if I was to go down leaving due to ill health. I think my general practitioner would also be supportive , I presently have 5 consultants; my rheumatologist consultant has supported me before when I reduced my hours so hopefully she would be supportive.

On my days off I feel far less stressed as I know I can get up when I want, take my time to get ready or not depending how I feel. I can rest when I want and don't have to put on a happy smiley face when all I want to do is scream the place down due to the pain. My job is quite stressful as I work in a behaviour unit in a secondary school; a typical day is students swearing at us, tables upended, water thrown, refusal to do work, books thrown, doors slammed; as you can imagine if you're having a bad day pain wise or otherwise, it's the last place you want to be.

Diana

#5 Nene

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Posted 11 November 2012 - 02:17 PM

Hi Winnie

Your school seem to be understanding which is great.

I work in a similar teaching environment as you. Please don't underestimate how much toll it can take on your health. I think we get used to the stresses of working with daily behavioural challenges and forget how intense it actually is! I also know how incredibly rewarding it can be and, like you, would not give up working without a fight!

I guess that's why teaching is such a special vocation.

Take care

#6 rubydoo

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Posted 11 November 2012 - 07:16 PM

Hi Winnie
I retired earlier this year from the NHS and I imagine that teaching has similar retirement policies as as nursing. Buttons has given you excellent advice when she says that you need to show that "all avenues of treatment have been explored".

It is also brilliant that you had an assessment by Access To Work and despite their recommendations having been implemented you are still struggling to commit yourself to working 3 days a week. My direct line manager, who was incredibly helpful and understanding, used both of these issues to support my application for ill health retirement. I also obtained a very detailed report from my Occupational Health doctor, had the support of my general practitioner and my consultant rheumatologist.

Also I had been off work at this time for several weeks due to having had gallstones removed (not related to the sclerosis). I was able to demonstrate how my physical health had improved during this time away from work, partly due to the significantly reduced amount of stress experienced by not having to go work. I was advised to expect an initial refusal of ill health retirement simply because of the government cutbacks and should expect to have to appeal. However, this proved not to be the case and the whole process took just over 3 months (luckily for me my retirement date was given just as my full sick pay was due to end).

Getting the actual lump sum and monthly pension payment started and paid into my bank account - well now, thats a completely different story.............

Good luck and hope you get what you want and so rightly deserve
Helen

#7 Amanda Thorpe

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Posted 12 November 2012 - 04:54 PM

Hello Winnie

I was given ill health retirement in 2008 at the age of 40 for diffuse systemic scleroderma and at that time I didn't even have internal organ involvement. I also claim disability living allowance (DLA) and what was called incapacity benefit, now know as employment and support allowance (ESA). You can claim DLA whilst working but you can't get ESA until your statutory sick pay ends.

With your medical team on board and the fact that your employer has already done everything they can to enable you to work means you really have no choice but to apply for ill health retirement. At the time I applied I was told not to reduce my hours because my pension would be based on part of my last salary so I would have inadvertently reduce my pension by going part time. I don't know if this applies to you?

Speak to your occupational health/welfare and apply, you've nothing to lose and everything to gain. I can't tell you how marvellous it felt to get my certificate of retirement and of course my pension, every single month!

Take care.
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#8 Poloplayer

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Posted 12 November 2012 - 09:22 PM

Hi Winnie, I had almost identical symptoms as yours after being on acid blockers for years. Also had a new symptom called Cheilitis or cracking skin at commissures of the lips. Had never had this before. Turns out no one had reminded me that your stomach has to have acid present to absorb Vit. B12 . I thought the symptoms were just more Sclero symptoms. I started B12 injections (1 per day for 2 weeks, then 2 per week.) I was like a new person within a week. The injections aren't bad and I can give them myself (by the way my lips started cracking at the corners in July). That's when I knew this was different. Please everyone ask your doctor about B12 . If you take acid blockers for more than a few years like most of us do, you could become deficient. This is an often underdiagnosed problem in us sclero patients and the elderly . I am not old and the brain fog was unusual for me. Sharp as a tack now! By the way, vitamins won't work as you still need stomach acid to absorb ingested B12.

#9 Joelf

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Posted 13 November 2012 - 01:37 AM

Hi Poloplayer,

Welcome to these forums!

Thanks for letting us have the details of your experience with Vitamin B12 supplements. I've included a link to our medical page on Supplement Guide for Systemic Scleroderma which also includes an interesting study Vitamin B12 deficiency may lead to cognitive problems as you have mentioned in your post.

Have you been diagnosed with Scleroderma for a long time? Please do post again and let us get to know you.

Kind regards,

Jo Frowde
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#10 Shelley Ensz

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Posted 14 November 2012 - 09:57 AM

Hi Winnie,

I'm sorry you are coping with end-of-work-life-issues. You mentioned that you are just "delaying the inevitable". Of course you are! Even if work is stressful or unpleasant, it is still a strong tie to community and an integral part of our self-esteem, which is why it is normal to clutch to it until every avenue of keeping it has been exhausted.

I just want to caution people in the U.S. (or other similar countries) that stepping down to part-time or intermittent work may mean that you could lose the work credits necessary to qualify for Social Security Disability. So moving back to part-time work, which may also make people ineligible for employer-sponsored health benefits, can be treacherous to both current and eventual benefits. When you even think that you might maybe become disabled some day, that is the proper time to consult a disability lawyer. Do not discuss it with your employer first. You need to know your rights, and your responsibilities, as well as develop a survival plan. It can take many months, or even years, before disability benefits are approved; and it takes several years from the original date of disability before Medicare benefits kick in.

Winnie, no matter what course of action you take, we are all behind you 100%. There is no easy answer, there is no other person that can say, "Enough already!". Whatever you decide, I wish for you the courage to be satisfied with your decision and to make the very best of it.

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Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.