PMR and work

BJ - I can understand you finding working difficult. I am in the fortunate position to be self employed in business with my husband and can therefore arrange my work according to my level of discomfort at any time. I am not sure I would be able to easily hold down a job under normal circumstances. However, if your work is not too physical it may well be that the distraction of working may be better than being at home and dwelling on the pain which in itself can be demoralising. It really is a very difficult dilemma but I wish you well in whatever decision you make.

Regards

Betty

I do not think I could hold down a job now, I am 73 and do not work but some days I just fall asleep wherever I am, others day I am fine, like today.

Yesterday I felt terrible, pains in my hands and shoulders and could not walk straight or stand for long. Today I have been to our local garden centre where we had coffee (without my hands shaking) sitting outside and when we got home my husband and I went for a walk up the lane into the country side for about 3/4 hr. I can not understand why some days are better than others as I take the same tablets each day. I started on 20mg steroids last August went down to 5mg but up to 10mg again.

I would have said that work takes your mind of your pains but I don't think that is true. I do think that stress makes it worst. Is your work stressful? I find painting helps me, and if my hands are not too steady then it will be modern art.

I believe you have to do what you think best and how you feel.

It does help to have an sympathetic partner.

I will try do the walk again tomorrow if all being well.

Good luck with your decision.

Spammy

Hi to all -

I worked full-time with PMR since diagnosis in 2001 until last summer when I was very ill and crunch-time came. I had to make the decision to go part-time as I just could not continue.

My work colleagues, including management, are just about the most caring and supportive people I could have wished for and although it was too much of a struggle at times and I would have to take time off, I was always welcomed back gladly.

I'm fortunate that I have an unusual and interesting job and since the one thing I have mostly been able to do is go to work and sit in front of a computer, I haven't really found it stressful - I find it more stressful sitting at home and looking at the ironing I can't do, the floors I can't wash, and the inch-thick dust everywhere I can do nothing about.

I now find, working part-time, that I have the time to do these things slowly rather than having to rush at them all on a 'good' day (which then turns into a 'bad' day because I overdo it). I also need the incentive of having to get myself up and about on work days, too - it motivates me to perhaps accomplish more at home before the working days come around.

I should be retiring come October this year, but I have already been asked to stay on (for as long as I like, really) and that is what I intend to do.

How long that will be is anyone's guess!

Oh, sitting in front of a computer is only part of my job - but when I'm not well I let others do the running about!

Hi and thank you for the replies - I should perhaps have mentioned that I am 55 so still too young to retire. I have now logged in so am 'official'!

Spammy - like you I paint and draw - I like the idea of modern art when hands are not working right. I have very bad Osteoarthritris in mine - very knobbly and painful, but no shakes so far. Typing on the computer is very uncomfortable and it is the thing I have found most beneficial since being off work!

I don't find the work I do stressful (though it is generally considered a stressful occupation! I refuse to be stressed) but by the time I went off sick I realised I was stressed simply by trying to get to work and keep all the balls in the air as well as managing my pain.

Queenbee - I do think the distraction of work helped me go on so long, but eventually became too much. I now find the painting is a good distraction though suffer when I try to move again after sitting for an hour or so!

Nefret, your situation sounds quite similar to mine - I had pmr first diagnosed in 2002 and have managed to work full time since until recently. Like you I have a brilliant team and manager who couldn't have been more suppportive and I really enjoy my job - though the difficulties recently have reduced my enthusiasm considerably! If I can get back to work it is quite likely I will go part time. Currently I manage the cleaning etc by having a cleaner, but if I am part time that may have to go.

The most frustrating thing at the moment is that the methatrexate is not making any difference and I don't have an appt with the consultant until November! My GP is very good though will have to go back to her to see where next!

Barbara

Just a quick practical bit of knowledge.... I work part-time for a large company and when first diagnosed saw the Occupational Health people. My manager wanted to know if the Disability Discrimination Act covered me... answer, according to the doctor I saw, yes. This is because the Act requires individuals to be considered in the absence of treatment, and pmr, without treatment, would be disabling and likely to continue for a significant period of time within the timescales defined by the Act. End quote!

Helpful if your workplace is getting funny about time off. Mine, fortunately, like yours are very good. Good luck.

I am a 49 year old female, married with kids 13 and 10, who was diagnosed in August 2007 with PMR. This was after three months of struggling to put on socks, getting out of the car, etc.I had not been to the doctor during this time as I thought it was a back problem - how I wish. My doctor at the time immediately checked my bloods and as my esr and crp levels showed PMR put me on steriods immediately. I am now down to 5mg a day but wake up every morning around 5.30 to 6 with terrible pain in my hips - loathe to increase the dosage as I just want to come off the steroids. On the subject of work I have started working full time in the past year and I have got to say that it gets me up and out in the morning and takes my mind of wondering when this is going to go away if ever and by all accounts will come back. Over the past two years I have found this site invaluable and have finally decided to register on it. Next question - will we be more susceptible to swine flu. Its good know that I'm not the only one suffering and feeling sorry for myself.