Its now 5 months since i have been to work, my main problem is my back which also affects my legs and walking. I have physio weekly and being at home i Manage getting around ok.
My note is due next Friday.
I dont know whether i will go back to work, I would like to but dont know if i can manage
Karen
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Hi Karen, I think it’s very hard working with PPMS. I know some people manage to, but I gave up work before I was dx… although I had a dx of ME at the time.
Really even on a ‘good day’ I’m only good by comparison to days when I can hardly get out of bed. I don’t have one single day when I don’t feel the effects of MS… esp the fatigue.
It’s a tough decision I know… not only means going on benefits (which is hard work in itself!) but also we so often define ourselves through the work we do. But if you can’t do it… well you can’t do it.
You could try going back and see how you manage. Be very careful not to just leave work expecting to go on benefits. You really need to make sure that you are made redundant because of medical condition means you simply cannot do the job anymore, and your employer needs to be sure they have done everything possible to make your job so you can do it… inc giving you fewer hours etc.
So do your research. A good place to start would be the website Benefits and Work where the forum (if you are a member… it’s about £19.45 for a year) has people who really know their stuff.
If you have an HR department or a union rep, speak to them. Make sure that you leave work in a way that will mean you are entitled to benefits (except DLA which can be claimed whether working or not).
Good luck… I really do know how hard it is to make that decision.
Pat x
Thank you pat for your advice on the matter.
I am under occupational health and also am in a union.
I think if i didnt have a bad pain in the bottom of my spine which also affects my walking I would find it easier (if only) easier said than done.
If only they could come out with something for PPMS to give us some hope
thank you anyway
Karen take care xx
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hi karen
i have exactly same problems as you
off work now 10months had meeting with pension dr in week and he said because ppms hard to justify going back to work
luckily i work for local council and union getting best deal
i want so much to get back to work but physically impossible,have to reorganise and not give up
i know there’s something out there for me
good luck and best wishes
steve
Hi Steve
Like you i work for the local authority.
I would also like to get back to work but like you say its physically impossible
Take care and best wishes.
Karen
This may help you guys … … I just want to say that I was ‘retired’ from NHS on grounds of ill health 13 years ago at age 40 (by then having had PPMS for 13 years). It was all getting exhausting (crutches), and the effort began to far outweigh the enjoyment of the job. However, it took me ages to reach that stage where I knew it was the best option - so much of our self-worth is tied up with having a job yeah? Since then, I have done various voluntary jobs, taken a part-time counselling course and a basic teaching certificate and now work very part-time as a learning support assistant working with adults with learning disabilities - which I love (now using wheelchair). I never imagined I’d be doing this still 13 years after leaving a ‘proper’ job. I know which one I prefer and that’s the present one. What’s my point? Keep going cos you really don’t know what’s ahead (probably good?!); there is loads of voluntary work out there and you just may end up doing something you had never thought of … it’s not easy though I know, I really get that. Yes, bring on the treatments for the forgotten few - I’m off to GP next week for amiloride - mebbe it’ll help? It’s definitely worth a go. Good luck guys.
Great post Debs… for all of us but esp our newbies.
I haven’t worked for nearly 7 years and 3 years ago I moved into sheltered housing (at 59 I’m the baby here!) I might not go ‘out to work’ but I do what I can to help things along here.
I did some fundraising and got a telly/dvd player for our communal lounge and I run a little club one evening a week when we watch old sit-coms or films. I go into my neighbour’s about 3 or 4 times a week… just for a chat. She’s 98 and doesn’t go out anymore but a chat and a laugh can cheer us both up.
Was out on my scooter today buying compost for potting some more plants… it’s a jungle in here… and I give plants to neighbours and friends (before anyone asks… no they’re not the smoking kind… LOL)
So although it’s not work I’m still able to do my bit… so yes I would agree… keep going!
We ain’t beat yet!
Pat x
Hi darlin,
Only you can decide when to stop work and your decision should be based on one question; ‘would it be better for my health,’ nothing is more important.
If the answer is I should leave it opens a barrage of questions like; what money will I have to live on; what will I do; how do I go about leaving? Then there’s a host of supplementary questions like does my company have a paid or unpaid pension scheme; do they have a clause that I can commute some of my pension into a lump sum?
If the answer is I want to stay you have about 1 year of being off sick before your company can start proceedings to sack you. Remember if you decide you feel well enough to return it must be on a phased basis; say 2 hours per day rising 1 hour per week. Get ‘Access to Work’ involved; lots of help available; taxis to and from (you only pay equivalent bus fare); infrastructure; furniture; helper worker; see https://www.gov.uk/access-to-workhttps
Good luck; you have plenty of time. Remember decide in haste; repent at leisure.
George
Thanks george
I have had a letter from payroll saying my ssp is coming to an end on 27/12/12 but will have to ring a number to find out if i am entitled to any thing after this.
I know what you are saying- my health is more important at the end of the day.
Karen
Thanks george
I have had a letter from payroll saying my ssp is coming to an end on 27/12/12 but will have to ring a number to find out if i am entitled to any thing after this.
I know what you are saying- my health is more important at the end of the day.
Karen