work

Hi Jane,

Working in pain and totally exhausted is really hard.  

I ended up using holiday days to break up my week so I could function.   After almost a year I was fortunate to be able to retire.  Not what we had in mind financially but it has all worked out.

Even working shorter hours or days can still be difficult.  I hope you find a happy medium that will work for you.

Best wishes and take care

Diana

Hi Jane. I've had PMR for one year and Rheumatoid Arthritis to two years. I had a lot of time off work, mostly the 2nd year when PMR started and the fatigue kicked in. My boss was very supportive and nobody questioned why I was often ill. Taking Methotrexate for RA also meant I caught more infections than usual, so that made things worse. My GP was happy to give me sick notes when needed. However, the daily commute to work became more difficult all the time so even when my boss let me shorten my day by a couple of hours, I wasn't coping very well.  Like Diana, I was very fortunate to be able to retire at the end of October and feel so much better not having to get up at 5am and face that miserable train journey in the cold and damp. I hope you have someone at work you can approach to talk through the difficulties you have and whatever might help you to continue in your job. You have an illness and are entitled to time off, but I know what it's like, especially your coworkers who don't always appreciate how you feel and think you are taking advantage. Do you have a HR department you can speak to? Good luck and I hope you can get some help there. Angela

First of all - do you have PMR or GCA? If you have GCA you are covered by disability legislation which means your employer has to provide help in you managing your work. I'm not sure whether PMR is covered, it too is a vasculitis so it wouldn't be unreasonable to expect it was - but what has that to do with anything.

Those of us who don't have to get up and go to work admire anyone who manages to do so with PMR. I know I couldn't have got up and commuted to get to a job for 9am - luckily I was a self-employed translator working from home but even getting from bed to chair in front of the computer was pretty agonising at times. And having to do anything physical would have had me crumpled in a wailing heap.

Out of interest - what do you do for a living? That has a great bearing on whether you can manage to continue with PMR/GCA. 

Hello Jane, I am not sure of your working arrangements but firstly I admire all you ladies and gents that are working whist also having PMR/GCA. However, there are certain employment law rules that protect you along with anyone else who is ill and works.

when you first developed/ diagnosed with PMR/ GCA did your gp ask if you worked, and if they did, did they not then 1. Sign you off from work because you could not work because you felt so ill, 2. In the case of GCA and all its associated high drug dosage and side effects sign you off work.

when you have been signed off from work it is illegal to return voluntarily or for your employer to have you back without a fit for work certificate which again you get from your Dr if he thinks you are well enough for work. By that time you should also have a return to work interview with your works occupational health and personnel department, and it is during that time that they are required by law to put in place a return back to work regime that slowly but surely benefits you the employee. The regime must be agreed by all parties and if at any time the employee feels the regime is too exhausting they can return for a further chat about perhaps re gigging the return to work regime.

all of the above is great if you work for a big company that has all of the components in place, that is occy health and personnel dept, in such instances you may even be able yo negotiate some sort of redundancy package through Ill health.

the problem arises when you work for a small company. They will probably need you back at work Asap as they'll be one one to do your job, nevertheless if you have a valid sick note they cannot take you back.

in these situations maybe you could speak with them to see if you could become part time, even only temporary just until you are much better.

i suppose another problem comes when your Dr won't sign you off as sick even if you are feeling unwell,not sure what to do in such a circumstance other than yo see another Dr who will sign you off.

the question of using holiday days as sickness days should not arise. If you are sick when taking holidays you are entitled to request that the days when you were sick be constituted as sick and your holiday days will be rebranded for you to take at a later day. I think you have to have a sick note to prove you were sick at the time but that U.S. the law.

and finally, employees have an obligation to inform there employers of any health changes. And therefore you are obliged to inform them should you develop an illness whilst away , say on holiday, from work, that very often determines if they will have you back.

i feel very sorry for all of you who have to work whilst suffering from these conditions, there indeed must be days when you simply don't want yo get out of bed met a lone travel to work, work, then travel back home again. I admire you greatly, but it's not right. Christina