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When do you know its time to stop working

Am not sure what to do but feelll really crummy!

Was diagnosed in 2011 and had 3 relapes that year, started tysabri in 2012 and I havent had a relapse since. Have been struggling at work since March with fatigue/headaches/not sleeping. Not said anything though cos I dont want to lose my job.

Came home fromwork a couple of weeks ago andbeen at home since - and had a couple of blackouts, slow walking, constant headache.

Cant move much, do anything - MS nurse thinks it may be a relapse.

My daughter (18) asked if it might be a good idea to stop working and jusst look after myself.

Cant bear the thougt that this is it - when do you know what to do?

If you are unsure then don’t make a decision yet. Your MS Nurse is saying could be a relapse then wait a couple of months you might feel loads better. Take this time to consider all your options…would working part time help, could your employer redeploy you, what would the financial implications be. Ultimately if you can’t work then you will have to stop working but as you were only diagnosed three years ago I would say it’s all still quite new to you and anxiety might be playing a part in the way you are feeling about this recent relapse. See how you feel when in remission which hopefully won’t be too long in coming. You don’t have to rush into deciding. Positive thought coming your way.

I worked in the R&D department of a major telecoms company. When I got diagnosed I had damage to my eyes which meant that I couldn’t (and still cant) use a computer for more than an hour or so at a time. I decided to retire right then and there. I took a 40% pay cut but my reasoning was that I’m not going to be on my deathbead and think “gee I should have spent more time at work”.

Hi my friend unfortunately the ms took the decision out of my hands as i was a Lifeboatman/mechanic and self employed fisherman/skipper and i lost the lot in the same day as when it came to light i couldnt do 1 that automatically meant i could not do the other so myu 25 ft’r was sold and my position in the RNLI finished , i struggled for the 1st 1 to 2 yrs as neither job gave me any payment or pension or such like and mentally i was left destroyed with the PTSD and the scrap heap feeling but i can tell you theres light at the end of the tunnel and whilst in life some doors will now never open for some of us , new and other doors will open above all keep positive and finish when you are ready my friend, hope all goes well and all the best

sheep

Hi Elaine

If you quit your job now, you may end up regretting it longterm. If it is another relapse, hopefully it will improve in a couple of weeks. Your GP could sign you off work for a while until you gauge what’s happening. Does your work know about the MS? Maybe seeing if you can go part-time is a good compromise. I’ve reduced my hours slightly and now get Fridays off which is a big help.

I’m convinced having something to do / somewhere to go / people who need me (… I’m sure they don’t really, but I like to think so!) is keeping me going.

Also, the last time I saw my neuro his comment with regards to my Tysabri treatment was “while it’s keeping you in work, it’s worth the cost”. I took that to mean if I wasn’t working, I would probably have to stop the Tysabri! Obviously it’s an expensive treatment and the NHS are cutting costs, but “Ouch!” … I’ve never thought of myself as a statistic before!

Emma x

You keep working as long as you can - you familiarise yourself with your legal rights under the current legislation regarding employment and disability. Don’t assume your preset symptoms will go if you top work.

As time goes on you may have to reduce your hours.

Hi, yeh, as the others have said, dont rush into a decision just now. If it is a relapse and goes away again, you may feel you want to keep working.

Other than that, if this isnt a relapse and you still feel as bad, in say 3 months, then maybe think of taking early retirement on ill health

That is a long process and can be quite worrying, but stick with the sick notes and look after yourself. You`ll know you are doing the right thing by then, if just getting up, and ready for work is too nackering every morning hun.

luv Pollx

If you are wondering whether you have reached the end of the road, you haven’t yet!

It would be no bad thing to start thinking about your options in the longer term, but it is likely to be best for you if you take your time and make sure that whatever happens is on your terms, as far as is possible. As others have said, don’t rush into anything, particularly if you are just going through a bad patch that might get better.

Good luck.

Alison

I can empathise with your dilemma. I haven’t been in work since my current relapse started at the beginning of May. I work in education so we are nearly at the end of term, and my GP has now signed me off till end of July, so realistically I need to think about what will I do in September? To be fair to management I need to let them know, but now is not the time (for either of us, you or me) to be making life changing decisions. I would agree with others and say give things time to settle, you might regret a hasty decision made during a relapse. Hope things improve soon for you, Gxxx

Hi Elaine, I am asking this question of myself at present, I have been back at work for 5 weeks after 4 months sick leave, I have PPMS & my mobility and mental agility have deteriorated significantly since last being in work. My family have said I should quit, but after 4months of being at home, I begged to go back to work. It is taking is toll on my health but like someone else has said we make that decision when we are ready don’t rush. Pauline

Hi Elaine, I am asking this question of myself at present, I have been back at work for 5 weeks after 4 months sick leave, I have PPMS & my mobility and mental agility have deteriorated significantly since last being in work. My family have said I should quit, but after 4months of being at home, I begged to go back to work. It is taking is toll on my health but like someone else has said we make that decision when we are ready don’t rush. Pauline

Thanks for the replies and support. Am waiting fr the results to the latest MRI scan but am feeling a bit better than I was and not quite as pessimistic about the future.

The statutory sick pay period of 6 months is quite a good yardstick. If you have been off work 6 months your employer will be looking for some sort of decision and it’s a good moment to take stock yourself. Some people are lucky enough to have a longer sick pay, I had 6 months on full pay and 6 months on half pay myself. At the end of 12 months I knew that going back was not the right thing for me or our family so I took ill health retirement. I think the important thing is to use sick leave to recuperate and not worry about life decisions. Shelve any thought about the future and concentrate on getting better. If at the end of 6 months you still don’t feel up to working then the decision makes itself. If however the time out has let you recharge your batteries then you haven’t jumped the gun. Jane

I dont know the answer but when I quit I never looked back now I dont know how I managed to fit work in. I would love to be fit enough to work but while I miss being able to work I dont miss work if that makes sense.Don