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When to stop working??

I was dx with RRMS just over a year ago, but looking back I realise I have had it for about 8 - 10 years. There has been a steady decline with all my symptoms worsening and new ones appearing. Among other things, I have limited mobility, my right foot and ankle turn in and feel set in stone - I haven’t been able to move the toes on that foot since last summer. I have on and off blurred vision and my eyes don’t always move together, I have constant pins and needles, tingling and numbness in my right hand and arm. I have burnt the back of that hand on several occasions but have no sensation. I am very unsteady, wobbly and lose balance, I walk with an elbow crutch and use a mobility scooter for distances. I have bladder and bowels urgency.

Just before Christmas I started feeling very, very tired and really, dreadfully depressed. I was in a really dark place, both mentally and physically, and thought I might be having a relapse. I work part-time and from mid January I was signed off work for 8 weeks and returned (at my request) mid March on a phased return. I am even more tired now, really struggling with writing and using the computer and mouse, as well as driving.

I saw my Neuro on 27 March and he said I may be in secondary progression and he asked me if I had thought about when I wanted to finsh working. How do you make that decision?? I am struggling to work, but I don’t want to keep having time off sick. I have an appointment with Occupational Health tomorrow and really don’t know what to do. I think I may have to think about finishing work through ill health, so any advice would be helpful.

Thank you,

Vicki

hi vicki

have you paid into an occupational pension?

if so, you may be able to take retirement on the grounds of ill health.

this can be a long drawn out process and involves working with occupational health . then you wil be seen by a doctor who will make the decision. this doctor will appreciate copies of the letters you get from your neuro.

i honestly havent regretted it for a minute.

good luck

carole

Thank you Carole,

I have had private pensions in the past and have paid into Derbyshire County Council teachers’ pension for the last 8 years, so that will not be much. After trying to prove to everybody (and myself) that I am capable of doing my job, I now have to admit how much I am struggling. I was always going to retire at 60, so it’s only 3 years earlier than planned. My health is more important and I suppose I can make a start when I go to Occy Health tomorrow.

Vicki

I sort of retired twice.

The first time was the “official” time: my fatigue was utterly debilitating and I simply couldn’t cope any more. I was lucky to be in a really good pension scheme and the occupational health doctor was based at my site so it was relatively straightforward for everything to be worked out. Like Carole, I have never regretted it.

What was crazy, looking back, was that my neuro of the time had changed my diagnosis from RRMS to SPMS even though I had only been diagnosed for about 18 months, but when I stopped work, I started to get better! It took about another 18 months or maybe a bit more, but I was clearly RRMS again.

I went on to do all sorts of things, but finally my MS had had enough of being good and I had to retire from my second career in academia nine years after my first retirement. Nothing official about it all that time: I just stopped the temporary job I was doing and stopped looking for a new one. At times I miss the work, but I will never regret putting me before my job. I am infinitely healthier when I don’t work!

Occupational Health is the right place to start: I hope your meeting goes well :slight_smile:

Karen x

If you have not yet done so, I would urge you to get firm information about what ill health retirement terms would mean in practice for you. It is possible that your pension terms would be based on something like ‘accrued years + added years up to normal retirement date’. So you might find that struggling on for three more years would not actually do much for you in terms of pension. But I am guessing.

One thing that most people who retire early (me included) tend to find is that it is a tremendous relief when, once you have really given it your best shot, you decide to call it a day. And not working is cheaper than working too - less tax to pay, no NI to pay, no pension contributions to pay, no commuting costs etc, etc.

I hope your discussion with Occupational Health goes well and that you can soon see your way forward.

Alison

x

Hi, so how did it go today?

I retired on ill health in 2000. I struggled with heavy legs, stumbles and fatigue before going on the sick. I never went back, as symptoms worsened all the time.

I believe Occy Health will tell you how they retire folk.

But i dont think you decide for yourself.

Looking forward to reading how you got on.

luv Pollx

Thanks everyone,

Yes, I met with Occy Health yesterday, and was in floods of tears for most of the hour and a half I was there. She advised me to see my GP and to have some more time off work. We talked a little bit about retiring through ill health and I am being referred to an Occy Health Physician.

I went into work for a meeting and then had a long talk with my line manager in the afternoon and I was in pieces again. He told me to go off work as of yesterday.

Even though I am struggling and I know that things have got worse, I know that I haven’t really accepted the RRMS diagnosis and now I have been told I may have SPMS I need to start realising it’s all true.

I know that not being at work is the sensible thing for me to do at the moment, and I would give anybody else the same advice, so why is it so difficult to actually do??

Vicki x

It’s hard because work is such a big part of how we and others see ourselves. Just about the first thing people ask after “what’s your name?” and “how are you?” is “what do you do?” The good news is that life absolutely does not stop when work does. It does take a while to adjust, but it’s worth it if it helps us to make the most of what’s important (and that ain’t work!). Kx

I am sorry it is all being so distressing and draining. I just don’t think there is any easy way of getting through this sort of stuff. Perhaps all a person can do is just grind through it, a day at a time, and keep everything crossed that you get it to the right outcome for you.

Hang on in there - you will get through this.

A

Thank you so much for taking time to reply,

At the moment everything does seem overwhelming and of course I am worrying about my future (like everybody does).

I am going to take some time out, and learn how to live with what’s happening to me, and let work look after itself for now. It may take a while, but I believe life has a way of working things out, even though if it may not be the way that we planned.

Thanks again,

Vicki x

Hi Vicki, I know the feelings well myself.

I struggled with work for a year with falls, spasms, trips and sheer fatigue, before going on the sick.

I had a senior position and was very conscientious.

I went to see the practice nurse on something not related to my MS like symptoms.

She noticed how tired I looked and asked how I was generally. I told her everything. She advised me to take a week off.

That week turned into a fortnight, then a month, then 3 months…I never went back.

That was all 13 years ago! I was 48.

I just couldnt imagine life without work…but I adjusted and got through the years somehow.

You will too, if it comes to retiring on ill health.

luv Pollx

Hi Poll,

I know that for over a year I have been trying to prove to everybody that I can still do my job and I have struggled to keep working. I have to accept that as things have got progressively worse I do need some more time off, which is what I am doing now. I also think I may be coming round to the idea of retiring early through ill health.

Vicki x

Me again Vicki, glad to read that you are feeling a bit less anxious re work.

Rest yourself and work will sort itself.

luv Pollx