working with PMR

[Caulkhead63]

do you all manage work ok? I'm finding it hard top up at 5 to do my early morning cleaning job

[SheffieldJane]

I would not have been able to work during the early days of PMR, I had to give up a much loved voluntary job I had done for 6 years. My heart goes out to you, struggling to manage physical work. I really don’t know how you cope. X

[PMRpro Ambassador]

Very much depends on the job - I worked throughout my 5 years of PMR without pred but all I had to do was stagger from bed to office chair in front of the computer in the next room. I couldn't have commuted or done a physical job.

What MIGHT help you is to take your pred before bed so it is already working when you have to get up . Some people manage that without affecting their sleep.

[Elispeth]

Sadly I had to give up work after trying to manage for over a year with the PMR. I think that I was in denial in the early stages. Unfortunately I started to feel quite unwell when I tried to push myself so I eventually had no option.

My heart goes out to you as you go through your journey especially as it sounds like your work might take it out of you physically. Please take good care of yourself as best that you can! It is my experience that the illness has a mind of its own and does whatever it needs to do. I used to be a very organised workaholic who never intended to retire. Now that feels like it was in another lifetime!

[Lyra42]

No, I’m finding it very difficult. Fortunately my work is very flexible (I’m a chaplain at a care home) but even so I have had to cut my hours from 28 to 14 hours a week and find even that a struggle. I just do a couple of hours a day and then just come home and sleep for a few hours afterwards. I really feel for you having to get up so early x

[DorsetLady PMRGCAuk volunteer]

I know it may not be as easy as it sounds but with PMR your employers do need to be aware and make your working conditions as good as possible. Any chance you could change timings for a start?

Perhaps have a look at this from CAB -and discuss with occupational health snd union if you are in one -

citizensadvice.org.uk/work/...

[Caulkhead63 in reply to DorsetLady]

No change of changing the times as my boss as a contract with the sse offices we clean for early morning. And he's NOT a caring boss anyway and only cares about getting his money!

[DorsetLady PMRGCAuk volunteer in reply to Caulkhead63]

Oh dear … that’s not good. Must admit did think that might be situation…

[piglette]

I mainly work from home so I can rest if need be. I am not sure I could do a cleaning job though.

[Nextoneplease]

Hi Caulkhead63 😊

I really feel for you. Certainly there’s no way I could get up at five and do a cleaning job. Like SJ on here, I also had to give up a voluntary role that I loved (it was only reading for the blind, but it was the travelling and timing that I couldn’t manage). And like another poster, I was a workaholic and miss working very much.

Is there any chance you could look at your skills and experience and see whether you could apply them elsewhere? Even private cleaning might be easier in the sense that you could arrange your hours.

Good luck, this is not an easy situation (as you well know!) xx

[powerwalk]

I worked fulltime for 4 years (and one undiagnosed) but eventually it got me. The fatigue was so bad that at that stage i barely left my chair i was so tired. I would prefer to go to work but just couldnt carry on so early retirement was the way to go. I hope you can find a way thats best for you and cleanimg is very hard on you i would think.

[Koalajane]

I work on the checkouts at Sainsburys. I had 6 months off work until my doctor and my husband felt I was fit enough to work. I cut my hours down from 25 to 20 and then again to 14 and hope to retire in 6 months as I don’t feel my job helps my PMR in particular my shoulders

[Sophiestree in reply to Koalajane]

Your doctor AND your husband? I dare not ask any more.....The kind of work you do is extremely strenous and I for one could not manage that at all. Feel for you enormously.

[Koalajane in reply to Sophiestree]

Yes, my husband used to go to the doctors with me on my appointment and she asked me first if I was ready to go back to work. She then asked him because I think she knew she would get an answer from him that would be more honest than mine as she knew I was bored at home!I think he was right when he said I think she needs another 2 weeks!

[Sophiestree in reply to Koalajane]

Nice doctor.

[Sophiestree in reply to Koalajane]

And supportive husband

[Koalajane in reply to Sophiestree]

Very nice doctor and a lovely husband. Mind you I had been looking after him when he was bedridden after breaking his ankle and being operated on and not being able to weight bear. He got better as I got PMR!

[PMRpro Ambassador in reply to Koalajane]

Well timed! Soon enough for him not to have forgotten what it is like ...

[Suffererc in reply to Koalajane]

I am deaf and I hate it when anyone asks my husband for my opinion. I do tell them I am deaf not gah gah

[Koalajane in reply to Suffererc]

We had had a lot of dealings with this lovely doctor and I think she had come to realise that I was the sort of person who carries on if I can stand up! That is why she asked my husband!

[Newplodder]

Hi. I am recently diagnosed and fortunately, I am still working. I am fortunate in that I work from home, predominantly using a laptop and phone. I work over 3 days which is helpful too. My employers are also very supportive, so although I haven't had any time sick, I've been able to work flexibly. Insomnia finds me answering emails at 4am at times. I think I would find it difficult to do a physical job in the mornings, as this is when my body is at its worst. I feel for you, and as others have suggested, is there any chance of you finding something else at different hours? I'm 60 and early retirement is not an option for me, so I'm hoping my PMR remains manageable. Wishing you well xxx

[Sophiestree]

I really feel for you. I work on a freelance basis, so sadly no employer to talk to. I have cut my hours by 75% as I cannot cope. Getting up early is the worst of the work days I do. I am so sorry that you have to deal with those types of hours. But if you are employed then you surely have rights. Perhaps make an appt with the CAB and see what they can suggest for you. As Nextoneplease says, is there anyway you can change your employment and do private work that suits you? You may find it more renumerable than the company you are working for. To tough though. Devil you do and devil you don't. You have everyone on your side here!

[Bridge31]

As others have said I would definitely try and find a private cleaning job with kinder hours and a kinder employer. You have to be kind to yourself as well with this illness. 🌸

[Hidden]

Note my diagnosis is Stills Disease which for me manifests as RD the main problem being pain in all joints, stiffness and weakness of joints and general fatigue/malaise.Prior to the pandemic I worked very hard in a very stressful environment. Six weeks of the year I had to attend trade shows and walk all day. Wearing a pedometer I clocked up 34 miles one day and all in a work outfit carrying a brief case and trying to sell advertising. My firm closed due to the virus, I’m 60 now and don’t know how I did it or why really given the stress but I admit I was Obsessed with success.

There seems to be plenty of jobs in a variety of sectors but 60 does not seem to be an attractive age to employers so I’ve become a homemaker as they say these days and I’m loving it, even iron pillow cases and make cookies, something I’ve never done before having always worked.

A leg injury early in lockdown and not related to my illness has left me with a limp and the inability to stand for long and if I can get rid of that I will look again for part time work at the garden centre perhaps. In the meantime I will cut my cloth to suit my purse (as my gran used to say).

I hope you can find a kinder job that’s easier soon.

[Octi]

I find getting up in the mornings very difficult, irrespective of how much sleep I’ve had. I work full time in retail management, so I’m very busy and on my feet all day. I find it’s ok until I sit down - when I have to do something in the office or I’m taking my break, my eyes feel so heavy.

[Knit11]

I currently work from home, but soon will be back to full time at the office. I barely managed to get into work at the beginning, when I refused medication, the pain became unbearable, and I waited for my workplace to approve temporary remote work. My job is almost fully on-line, but no one is allowed to work from home. I commute a total of 3-hours daily on public transportation, tiring enough when healthy, and detrimental with PMR. I can't even think of giving it up since I live in the US and get my health insurance through my job and i am too young to be eligible for retiree healthplan (Medicare). Part-time work typically don't provide health insurance either. I am lucky to be approved for remote work for a few months, but worry about how to manage going back.

[Abcd123455]

Hi, it’s hard but I still work having been diagnosed nov 2021 in quite a physical job plus care for my family and most days manage walking the dog. I do take my prednisone at night though as it didn’t have the same effect when I took it in the morning. I think it’s different for everyone and you need to pace yourself, some days you can do more than others. I find I need to rest in the evenings as this helps with the next day.

[Aeowin777]

Yes it’s really hard. I have to take pred at night as it seems to take too long to kick in in the morning and I’m so stiff and painful but I always wake in the night. Dr says take in morning but if I did that would not be able to work. Literally hobble to car drive hobble to chair at office it’s been a year and I’m so done with it no joy in life any more just existing with the pain. Just keep hoping it will stop one day. Good luck with your recovery

[PMRpro Ambassador in reply to Aeowin777]

If you are still in pain either you are not on enough pred - or it is something else. Either way, it needs looking at,

[softekcom]

I really feel for you Caulkhead63 . I have a desk job, not physically demanding at all. And work from home. But the fatigue and post exertion pain really get me down, some days I am utterly useless to anyone at home or at work. I've given up totally on house cleaning.

To make matters worse, work have noticed too. Two months ago they gave me my redundancy notice. So the job's now going in a few weeks. It is indeed worrying to contemplate.

Is there any way you could apply for some sort of disability help?

[PMRpro Ambassador in reply to softekcom]

PMR is protected under disability discrimination. Have you a union?

[Caulkhead63 in reply to PMRpro]

No union it's a small cleaning company

[PMRpro Ambassador in reply to Caulkhead63]

The question was to softecom

[softekcom in reply to PMRpro]

Yes, but the letter is worded in a way that lets my employer off. Yes, I belong to a Union, but they can't do anything. The letter says the role is being made redundant. Doesn't mention my performance or disability. In reality, we all know that my job is getting offshored at a fraction of the cost.

[PMRpro Ambassador in reply to softekcom]

True - the one thing they can't off-shore is the cleaning ...

Drives me nuts - I want someone who speaks English as well as I do on the other end of the phone and who doesn't struggle with regional accents (I don't have one). Better when it is a chat function as their understanding of written English is often better - but it takes so LONG!!! Less of a problem here - they can't off-shore to many places, people don't speak German in many countries

Hope you at least get a reasonable pay-off????

[softekcom in reply to PMRpro]

Statutory redundancy pay because I've been with the company for 3 years (all of them messed by PMR/GCA). But what I am grateful for is access to the eLearning platform, which I hopefully will use to get a couple of new skills so I can look for another job.

[Caulkhead63 in reply to softekcom]

To claim any disability you have to have had it for at least 3 months I believe the benefits agency don't like you leaving your job without what they class a good reason