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professor  plumb

Struggling to Work

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Hi All,

 

I have had the Sacral Nerve stimulator changed over holiday as the old one was damaged and 11 years old. The new one seems to be a lot more effective and I am pleased with the results on the bowel problem. I am trying to hold down a full time job but I am finding it increasingly difficult with severe pain everywhere and especially my hands and feet combined with constant fatigue. I am worried about contacting my Human Resources people as that might open a can of worms that there is no way out from but has anyone gone down the route of retirement through ill health? Any help or advice would be appreciated as I am at the end of my tether now and feel I am backed into a corner where I feel too ill to work but can`t afford not to.

 

Regards and good luck to you all.

 

Professor Plumb

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Hi Professor Plumb,

 

I'm pleased to hear that your new Sacral Nerve Stimulator is successful; it must make your quality of life much better.

 

Sorry to hear that you're finding your job such a problem; I'm afraid I've no experience of work related problems, but we do have a useful link here on employment and support allowance and also another thread which discusses early retirement which I hope you'll find helpful.

 

Amanda has first hand experience of early retirement due to Scleroderma and I'm sure she'll be along to give you some more advice and information.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Professor Plumb,

 

I have just been today for my 2nd year checkup for my Sacral Nerve Stimulator and everything was fine. I'm so glad I've got mine and don't know how I coped prior to it.

 

I got Ill Health Retirement 3 years ago and I honestly feel like a different person now that I can rest when I need to or stop doing jobs, etc. when the pain etc is bad. PM me if you want to know more information. I retired from teaching.

 

Buttons

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Hello Prof Plumb

 

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.

 

You need to decide whether you want to try and keep working or whether it's time to make it easy on yourself. I had no choice as I couldn't even get out of the house unaided so my decision was made very quickly by my disease but it sounds as if you still have some time left.

 

Consider applying for DLA and in confidence contact your human resources and/or welfare officer to find out whether ill health retirement is an option and how much you would get if you applied for it.

 

Ask your general practitioner/rheumatologist whether they would support your DLA application and your ill health retirement should you decide you want to retire. Needless to say your medical team need to be in support of these things.

 

Have a look at the direct.gov website for more information about benefits and do make enquires at work and with your medical team. The more information you have the better equiped you are to make a decision about your working future or lack of.

 

Take care and I can't tell you what a kick I get out of telling people I retired at 40!


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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My sympathy is with you.

I have been there a couple of times. At age 40 I was ill health retired, but without a pension, only a lump sum. With a divorce ten years later and having to split the value of the lump sum I was granted with my then husband (Victoria, Australia family law), I was forced back into the work force, despite the multiple symptoms I had. I was lucky enough to find short contract work with a London university. I didn't know if I could cope with work, but this way I could refuse a renewal of a three month contract if I was not well enough. It became a real battle sometimes just getting on the train and the tube to work, but I did it for 8 years.

 

When I tell people how lucky I was as not only did I get paid but I missed every winter by returning to Australia just before holiday and back to London around Easter. I didn't tell them that to eke out my earnings over only part of the year I did a series of house sits in London and rented out my Australian house for the whole year. Sometimes I didn't know where I was going to stay.

 

The Scleroderma can be better or worse for long periods of time - and so it might be possible for you to return to some sort of work in future if you leave. I hung on in the beginning and I am sure it was detrimental to my health - I thought I couldn't survive without my job. I never imagined I could work a job again but I did. Yes I found myself in hospital a few times, but I had the expertise of the Royal Free (bless them).

 

It is scary the first time you have to face the idea of not being able to work and not having the income. It may take a radical rethink of your life and how you lead it, where you live. What I did was to try to f ind a positive amongst the negative. Perhaps this is the point you can move, downsize or whatever.

 

My Scleroderma hasn't gone away, and I do still have a multitude of symptoms - many different to those I began with, but at present I have set up and am running a gift ware and home ware shop. My advice is to take this as an opportunity to rethink your life and how you live it.

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Hi Professor Plumb,

I have been thinking of you lately and wondering how you are getting on with your SNS (Sacral Nerve Stimulator).

 

You responded to my questions about 21/2 years ago, but at that time the Gastroenterologist I was seeing told me there was no hope for a SNS for me.

 

Recently I was getting desperate again and chose a new Colorectal Surgeon to consult. He informed me quite quickly that he is now doing SNS here in Auckland and that far from being a write off he wants to try with me. So now I am on the list and will most likely get my test implant next February.

 

We have two systems here, Public which is taxpayer funded and Private where the patient pays for themself, either with insurance or cash.

I visited this man as a Private patient and he referred me to himself in the Public Hospital so not only am I getting a chance to try something I thought I never would but I don't even have to pay :emoticons-yes: .

 

I have been given all the info including the battery life, which they say is about 9 years and maybe longer if you turn it off at night. Do you do that?

 

I hadn't realised when we talked before that you had such a long history with this device so I am really pleased to hear how you are doing.

 

Hope you are able to sort out your employment issues. I have been lucky enough not to have to be employed outside the home since our children arrived and I know that if I had been forced to work I would never have lasted very long.

 

Best wishes from downunder.

Judy T

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Hi everyone

 

Thank you for your replies, it looks as though it will be worth persuing with my employers but be a bit cagey how I go about it.

 

Good to hear from you Judyt, I am pleased they are playing ball with you. Yes I have had an SNS (Sacral Nerve Stimulator) fitted for 11 years; it was paid for by the manufacterers and very experimental. We had a few problems with setting it up because as I was doing a practical job when I twisted my body occasionally it would liven the nerve to my leg and make it kick out! Quite amusing really but the doctors didn`t like me riding my motorbike until it was sorted out. Although the old SNS helped me quite a lot I broke the wire in it somehow and it had to be changed.

 

The new SNS is a big improvement , it is now fitted in the buttock instead of the stomach so there is only a very short wire to the Sacral Nerve. There must be other technical changes because this new one works extremely well on me. I could not live without it now as I would have to stay at home.

 

I do not turn my SNS off at night because my problem of going to the loo is worse in the morning.

 

I hope it works as well for you.

 

Kind Regards

 

Professor Plumb

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Hello Professor Plumb

 

Taking ill health retirement isn't actually as scary as you think, once you know where you stand financially. I got a statement of how much my lump sum would be and how much my pension would be each month which really helped allay my fears.

 

Having said that I had no choice in the matter because I was off sick unable to work anymore and knowing that I would not be able to return to work anytime in the future. I knew that I had to either retire or be fired and after putting in 20 years I went for the retirement option.

 

I have a friend who has had limited scleroderma for 10 years and finally took ill health retirement after struggling more and more to make it into work and stay there. I also have another friend, with the worst scleroderma I have even come across, who is off sick and considering applying for ill health retirement.

 

Should you go the way of ill health retirement you'll be in good company!

 

Take care


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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