I love reading your posts,I have pmr since last dec,but had to wait a long time to get the right treatment had a lovely doc,and I now have another brilliant doc who calls me every 2 was,to see how I am.i know that we shouldn’t ask questions about none related pmr,but would someone just help me?i m a live in housekeeper/cook I live in a cottage across the garden,my boss does not want to understand the discomfort and terrible pain I m in,some days I m all good other days I just want to cry and rest.i have the whole family staying here 8 of them!one over 78 and a pregnant.they want me to go in and do all heavy work including dogs,horse and goat plus cooking!o yes and shopping.i m on 25 pred as I m finding it very difficult to get passed 20,a wk ago I had to go back up to 40 again due to my neck pain returning and it’s coming back again.
Thank you ladies and gents,keep safe.
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Canarylady
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I think there are a couple of important things here.
Even if you weren’t ill, this sounds above and beyond expected. How many people are usually in the house? I expect you may be asked to cater for more at a weekend maybe but not for weeks!
Do you have a contract? This sounds above and beyond.
But you are also ill. No one really gets the disabling pain and exhaustion of PMR. Your doctor sounds good. Can you get them to write a letter to explain why you should be doing less. I don’t know about legalities of this sort of employment.
But also, are your employers human with empathy? This isn’t the 1800s
These are indeed extraordinary times where people show what they are.
Sounds to me there are people in the household who can take on some of the responsibilities in the household. Unless underlying health issues pregnant women can cook , walk dogs etc. Are the others able bodied?
Sounds like everyone need to chip in.
Needs communication and empathy to get through this. Work out what you are able and willing to do. In many circumstances you’d have been given time off work.
Thank you so much for getting in touch,so nice to be able to talk to someone who understands our condition,these people are in their own bubble!i m afraid!
They only look after no 1!
I had applied for a job before the virus hit us,but of course now the job is on hold.
I will talk to my doctor regarding a letter,being in this kind of job if your not able to do your duties you have to move out and I m sure that’s what’s going to happen in the long run.
That’s why I was getting things in place before I am asked to leave.
Or trying too!
How are you coping being in lock down?
Being out in the countryside here,it’s lovely but lonely,in some ways ones away from a lot of people so safer?
I think how they respond will show what kind of people they are.
These are uncertain times.
We are rural and so can get out for walks in lockdown and have a big garden. We have planted lots and getting area ready for potatoes. I really feel for those in small flats with kids. Must be tough.
Hopefully the family you work for will learn new useful skills.
Maybe you could do tutorials on loading the washing machine and cleaning toilets! 😉
When you say a family of 8 , is that your Family in the cottage with you or the people you look after in their house?
What is your age , Do you have any other conditions ?
Please let us know it could help with the advise we give.
This is PMR related because our Condition can impact on all different parts of our life , as you are unfortunately finding out , so people do need advice on how to cope with Employment or Domestic / Family duties .
You are understandably Flaring with the Activity .
Give us a few more details on the Family arrangement and hopefully we can help you through this early stage and how to get your Employer to help you keep working for them .
Do you have to rely on the wages currently to keep going for the next few months or have you got a rainy day fund that you can survive on until your new job begins?
Is there a family member or friend that you could stay with whilst you wait for your new job to begin offering them nominal housekeeping money and being their home help instead in exchange for a place to stay?
I think you can already see what sort of advice I may be giving you , but obviously , if you have no other option but to stay where you are and work there at the moment this advice would need adjusting .
Take heart though , by the end of the day I'm sure we will have come up with some solutions that will help you.
Your situation sounds impossible, most o us have trouble dealing with our own families.
I am no expert on employment law but there is a pinned post about it that might help. You may well need the support of your GP to make any changes. The virus situation will not help you make changes, except that most of us on pred are in isolation and if you were to do this you shouldn't be running around after others.
Thinking of you, you will find pleanty of people here to talk to when you need to.
This is outrageous and isn’t sustainable for you physically, plus it sounds bordering on modern day slavery. It may be that you hold more cards than you think but you will need to be strong to play them. I’m not sure how many people will flock to take up this job right now especially when they hear what the new job description is. They are either so wrapped up in their own lives that they don’t think about others or they know it is unreasonable really but they are scared for themselves but think they have you over a barrel. I do have friends who are so used to having other do for them they have lost the knowledge of just how much effort it takes to do things. Also, things never being right can be a form of gaslighting where your reducing self belief in your ability to do the job or fear of losing it makes you want to try harder and harder to please. Do you have a clear idea what you could manage (if anything) to put forward? Your doctor must intervene and perhaps the threat of you leaving needs to become a very real spectre. Do you have any friends or family who can help you out should you need to leave so that they know you have options and could go right now? This is a serious situation now; you are on 40mg (I couldn’t drive safely) with a threat of GCA and it’s risks plus you are now immunosupressed at that level.
I am very tired,even yesterday was an effort to do things,ie cleaning the gym and loo s!not nice.
Then ironing after that!but today I m in discomfort in my shoulders and neck,I ve been asked to go in today to do the other big gym with large room and bedroom and bathroom,yet another loo!haha.
I will have to go in otherwise I m frightened she ll stop my wages and I need them for my bills coming in.
Do you actually have a signed contract specifying which hours you are meant to do and whom you should be doing things for.
If you are employed as her worker / companion/ Cleaner it is not within your job description to look after her guests as well , they should be making arrangements and tidying up after themselves.
Is there anybody in the family visiting that also helps looks after her affairs and is reasonable to talk to.
This may be a good time to discuss your Health with them and ask to discuss with your Lady Employer the appropriate amount of hours and care you should be doing.
At the moment her Family could even help out with animals , cleaning , driving while you take some paid sick time to help get your condition under control .
Unfortunately , your illness will keep Flaring if you are working so much in physical and stressful environment and are also not being given proper rest. You should not be working 24/7 , and if she insists on having night or evening duties done for her she needs to get in another member of staff to do night cover.
Point out that it is one thing looking after HER, but the rest of the family as well is another matter altogether. Especially since you are at risk of you contract CV and they have fled the hotbed in the UK. Which I seem to remember the government saying people shouldn't during the week.
I can see you are concerned it is your home as well as your job and so that will make you apprehensive to discuss things.
But , as much as she may not want to discuss things with her family there , they may be the arbitration you need right now to sort out the problem.
If she isn't put in a position that she must accept that her behaviour and use of your services is inappropriate she may not be reasonable when there is no body there to hear your side of the situation.
This is awful you, the one thing I keep thinking is....with the extra people there..do not look like you can cope or it will be expected of you!.....they will take more advantage of you.....
I am thinking of you....keep us posted we are here.....
I have to say that if 25mg is still leaving you in severe pain I do have to wonder if the diagnosis is correct. One of the characteristics of PMR is its response to a moderate dose of pred and when more is needed then more investigations is required. PMR isn't the disease, it is the name given to a particular set of symptoms and there are several things that can underlie them. However - the amount you are being expected to do would make anyone flare. Pred doesn't cure the illness, it manages the inflammation. The a/i disorder continues in the background and leaves your muscles intolerant of acute exercise - and I suspect what you are suffering is permanent dealyed onset muscle soreness.
The dose of pred you are on means you come under the self-isolation advice. I don't know how that fits in with the sort of employment contract you have. That family is flouting all the government advice as well as being cruel and entitled - but I don't know how they can be brought to book.
The pred does help and then once I start doing heavy work it will flare up,if I can rest it,it improves and I can get on and do my normal work ,carrying heavy things or bags upstairs doesn’t help!
I ve seen my Rheumatologist and had bloods etc taken,and because my old doctor wanted them to see how bad I was she put me on a low dose of preds,it was only a low dose but wow it did help me,within hrs I started to feel like my old self again.
I am not in severe pain being on 25 it just tells me it’s there.
Before I saw my new doctor I had a very bad experience of pmr,I had no idea what was wrong with me,I have never had such pain,and discomfort.
Do remember that the Pred is only keeping the inflammation at bay and isn’t curing it so that one can push through as normal if the pain is reduced. Granted your situation is very trickey.
I really feel for you in your vulnerable situation with the job tied to your home and struggling with pmr too. From what you say your employer doesn’t sound empathetic at all, you need to sit down and have a conversation about the mismatch between your health and workload. If it was me I’d like to know legally where I stood employment wise, not having a written contract doesn’t mean there isn’t one. It would be worth ringing citizens advice, see what you can find out? As others have said, a gp letter might help her understand the nature of pmr and the need to back off physical activity for periods of time. Maybe print off some info of this site for her. Anyway why is the house full of visitors in this lock down.. try this
Thank you for your message,I will be getting in touch with my GP during the week regarding a letter,and shall have a chat to my boss.
At the moment I m doing just housework when they are around other parts of the house!
I m not sure if I should be going in or not?
Very difficult to know what to do for the best.
Funny thing is her mother knows about pmr as her second husband had it in his 70 s!but my boss doesn’t want to know!and just thinks once your feeling better your all sorted.
Hi Canarylady, so sorry to hear about your situation.
Are you actually employed by this family? If so then the full force of employment law is behind you. If your employer uses PAYE to pay you, you are employed. If you do your own self assessment tax return you are self employed.
You are in the group that is supposed to be self isolating. You should not be working. You are putting yourself at great risk.
My suggestion is to get a letter from your doctor stating that you should be self isolating. As someone has said before, the government has stopped any evictions. As for money you can claim Universal Credit or Employment Support allowance if your doctor issues a sick note, which in your circumstances he will I am sure.
Keep in touch and let us know what the GP does and what your employment status is then maybe along with other peoples help we can advise on what you may be able to claim.
Hope you are staying as safe as possible. Sounds to me like "the family" think they are entitled and immune Take care of yourself xxx
I can't add to the suggestions that others have made, but just want to say that my heart goes out to you.
Discuss all this with your GP. Tell him/her what you've told us and hope that they sign you off sick.
That family are going against Government advice, not staying in their own homes. They should have brought their own 'staff' with them - oh, sorry, they don't have any, so are taking advantage of Her Ladyship's!
Big thank you for all that information,you ve made me feel much better,as it’s been stressing me out and not helping with My pmr.
I will do as you say,and ring the surgery up in the morning.
Yes she does use paye,for my wages.
And I understand she doesn’t want to keep paying me when I m going in and out just doing odd jobs for them all.
I ve not been doing the dogs or horse and goat,as it’s too much to at the moment.
But she still wants ironing picking up and some cooking also cleaning doing,so I m in and out of their house,I now go in when they are not in the rooms I need to go in!
With COVID 19 a reality in every space of the planet, I don't know if you would want to continue to be around all of those people. Especially being immune-compromised. Just supporting you with that sad reality. I realize that you might not be in a position to move, but you might want, or have to start thinking seriously about that soon. They would understand...too bad if they didn't ! Any one of those 'way to many people' could become exposed, unless they are literally never around other humans? Protect yourself, friend. They can take care of their own ~
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Take care of yourself xxx
Different attitude this time around
Hello to the friends that educated me about PMR. 
PMR second time around!
I am still here my friends x
I'm new and would love to hear your thoughts
