Not sure what to do about work 🙁 I work in care at home 4 on 4 off, 9am to 2 pm then 5pm to 10pm. I was off work for a couple of weeks when I was diagnosed with PMR and the steroids really helped with the pain and stiffness. My first week back I just did my am shift and although I was really really tired I didn’t have too much pain until my last day and after a rest the next day I was feeling ok. This 4 on I have tried to do both my am and pm shifts but had to phone in sick this afternoon due to upper body pain, breathlessness and feeling really shaky, really struggled with getting up from the floor and generally feeling exhausted. I’m feeling better after resting but still a little upper body pain. I feel bad for my clients and my boss as it’s difficult getting cover, I know I have to look after myself but I need to work the hours I do to pay the bills……sorry for the moan just not sure what to do for the best.
Flagging today: Not sure what to do about work 🙁 I... - PMRGCAuk
Flagging today
Another thing is what I can only describe as hot flushes several times an hour
Hi Joneskye,
Firstly, what dose of Pred are you on now?
The first thing that strikes me is the 4days On/4days Off..... This really needs modifying & the first thing that springs to mind is One Day On/One Day Off or Two On/Two Off & consideration to what you are actually doing at work.
PMR requires modifications to your working conditions to enable you to continue & that is covered by law.
Have a word with your Manager & see what you could come up with to enable you to continue in work.
Very Best Wishes
MrsN
I’m on my first month of treatment at 15 and have an appointment for blood test on Thursday then a phone appointment with the doctor who diagnosed me at the hospital. My boss is really good but I can’t see the different days option being possible as I work back to back with two different carers both of them only do 1 shift per day as opposed to the two shifts I do. I have managed to cover my evening shift tomorrow so only have my 9 to 2 shift to do and then I’m on my 4 days off. I’m planning on going in to see my manager after I get my bloods taken on Thursday so I will see what they say.
Oh Bless You, l found when l was working that l was always exhausted by lunchtime & l tried shortening my hours but ended up trying to still do my job but just in less hours, l worked 4days a week with a day off on a Wednesday.....You may need to take some time off - eg signed off for a month to see how you progress. Unfortunately PMR is The Boss & we have to learn to accept the limitations it places on us.
Let us know how you get on with your manager.
Kind Regards
MrsN
Thank you I will🙂. It’s a big adjustment just to get your head around everything. In the past I’ve always just plowed on and tried to work through it. It’s a hard habit to break but I know I need to. Thanks for your support
I do agree that the habit of just working on "through it" is very hard to break. Something I'm still learning, nine months in.
I'm sure people who have had to work whilst on pred (early days) will be along to give advice. I can't really imagine working with PMR and pred, although I did work with undiagnosed PMR for a number of months. But I was moving books, not people, big difference! I remember one day I had a pile of books in my arms and I had to call a co-worker over to relieve me of them because suddenly I couldn't move! Is there any possibilty of being given less arduous work while you are still in the early phase of recovery? Your PMR is still active, just your symptoms are being kept in check by the pred. It is a significant systemic disease and it would be ideal, but maybe not possible, to be able to have a few weeks off work completely. Do you have any long term disability iinsurance? By long term I'm not talking many months, but maybe a couple, perhaps until you're able to start tapering the pred and also your body will have started to adapt to the medication and hopefully you'll feel better in yourself.
Have a look through some of these FAQ you’ll know which ones to read & it might give you some idea of an understanding of PMR
healthunlocked.com/pmrgcauk...
Regards
MrsN
Hi Joneskye. I was diagnosed with PMR 2yrs ago and worked in the nursery class of a primary school. (I'm 63yrs old) Very quickly I required time off sick, and since May 2019, I've attempted 2 returns to work and both have been unsuccessful. Extreme fatigue, flares of my symptoms and inability to stay feeling well enough to do my job effectively, all contributed to me now working through the process of being medically retired!This condition is not one you can 'push through'......there will be serious consequences and setbacks if you try. The instinct is to try and keep working, thinking a rest day will recharge your batteries. Unfortunately, it doesn’t quite work like that and unless you respect your illness and afford it the time it needs for you to recover, you can expect it to be a very long haul! Rest is the most important thing you can do in aiding your recovery and somehow you have to find a way to accommodate that. If you take some long term sick leave and pay national insurance contributions, you should receive statutory sick pay and occupational sick pay. When that eventually ceases you are entitled to Employment & Support Allowance (which isn't means tested.)
The very least you probably need to do is sit down with your employer and work out a work management plan that allows for your medical needs to be addressed so you can continue to work safely.
It probably all feels quite overwhelming but there are definitely things you can do to make your work life easier..... maybe you have an Occupational health team or union rep you can take counsel from?? Whatever it is, don't be frightened of saying what you need and why.
I wish you the best of luck.
Thank you for your reply, I work for nhs Highland so pay my national insurance and I think we are allowed some time off paid sick. Taking time off has always been something I have tried not to do but I do now realise that’s not always for the best. I am going to arrange a meeting this week with work and see what I can find out.
Like you...I've spent my whole working life trying not to take time off work so as not to let the children down or make the work load harder for the other teaching staff... particularly in the last number of years when supply staff simply aren't available to cover for me and money is scarce to employ them anyway! Many times over my working life and prior to diagnosis, I've gone into work feeling unwell when I probably shouldn't have. However, since diagnosis, I've learnt very quickly that there is no place for noble deeds here! You have to put your health first! If you don't, then the PMR/GCA will make sure you do, with re-emerging symptoms and a worsening of your condition. Don't misunderstand me...I'm not saying it's not possible to work, but it totally depends on the type of job you do. If it's physically challenging, mentally challenging, stressful, long hours, shift work, etc.... then it will be far less likely to be compatible with keeping well. You'll achieve nothing as you'll feel really poorly and you won't be capable of doing your job to the best of your ability.
PMR/GCA is a chronic, systemic disease that needs serious consideration when making 'work/life balance' decisions. Because it's not really a condition you can always see, our minds have a tendency to tell us we'll be ok if we just carry on as normal, but we're not normal health wise....we're suffering from a serious condition and the sooner we can accept that then the easier it becomes to make all the decisions that may come our way.
For most of us the condition will diminish eventually, but for that to happen, we have to make sure we give ourselves the best chance for it to do so.......and that really means lots of rest when we need it....not just when we can fit it in!
I apologise if it all sounds a little bleak....it really isn't......but you do need to understand what you're up against in order to make good choices that will aid your recovery.
Just try to remember that for once you have to put yourself first.
Wishing you well.
I think you are going to find your type of work especially the shift patterns very difficult at the beginning, so you need to get your GP and your management (including HR and Occupational Therapy) on board over this.
Have a look at this post (4 months ago) and related ones -
healthunlocked.com/pmrgcauk...
Might be some useful info in the answers.
This one is a bit older (2years), but could be useful - unfortunately writer is no longer on forum - healthunlocked.com/pmrgcauk...
Just a query- are you in a union, they can be useful in this sort of situation.
Good morning KendrewI always feel so reassured reading your posts and replies to people who are on our PMR Adventure!! My circumstances are similar to yours in that I am 64 years old and used to have a career in Education. I was diagnosed in March of this year and started on 15mg of the Miracle Medication Prednisolone 🙏🙏 💪💪💪. Every day in dealing with this new out of the blue condition (many of us have never heard of PMR!) I thank my lucky stars that I have retired from being the Headteacher of a Junior School, a job that I absolutely loved but would have been forced to leave with dealing with the trials and tribulations of PMR. Thank you for your honesty and wise words Kendrew.... they help with the down days.
Love from Elodia
Hi Pondweed,
Your thoughts ring so true. I absolutely loved my job and all the children I've taught over the years... and a third attempt to return to work was my initial hope, but in the end, all the optimism and determination in the world wasn't going to bring that about if it was going to make my condition deterioate. The decision to retire was enormously difficult and upsetting for me but it was the right thing to do and once I was comfortable with putting my own needs first, everything sorted itself out and I now know I have new adventures to look forward to.
❤️❤️❤️
That's the spirit Kendrew!! A strong, positive, passionate attitude runs alongside overcoming our PMR haul. Lovely to get your reply that so resonates with me and my former life in education.Love from Pondweed 💪💪♥️
🙂 Thankyou. PS. Elodia...... what a lovely name. Never heard of it before. Really beautiful.
Hi KendrewThank you....yes, my name is unusual . I was named after my Spanish, well, Catalan grandma from Barcelona. I'm a bit of a mongrel dog....my mum was from Barcelona, my dad from Slovenia and I was born in Oldham, Lancashire!!
My HealthUnlocked name is Pondweed as Elodea (spelt ea as opposed to ia) is a Canadian Pondweed that is perfect for fish ponds!!!
😍😍😍
I used to work in care homes. I have had to give up work. I realised it was dangerous to continue when I fell asleep at the wheel of my car! Luckily it was momentarily and no accident but it frightened me so decided I couldn't continue.
I was self-employed so went directly on to Contribution Based ESA. It's been difficult financially but health-wise and safety wise was the right thing to do. I guess you only get statutory sick pay if that. If you have to cut your hours you may be able to get Universal Credit.
I think you have to talk to your Manager about your split shifts and working pattern. In all honesty your Manager needs to do a risk assessment if they want to keep you doing this work pattern. It's probably better to change your shifts and shift pattern for your employer rather than lose a good staff member. I know how difficult recruitment is in care at the moment.
I've not worked since 2016 partly due to PMR but I do have other joint problems too. I cannot imagine a time when I would be well enough to work let alone in care!
Do hope you can sort something out with your employer x
Hi JoneskyeThat's a pretty tough working schedule in a physically exhausting role.
The first thing is to remember that you need to prioritise your health for the long term, rather than be concerned about about the difficulty that your manager may have covering your shift. It's difficult for those in caring professions to 'abandon ship' but - put bluntly - if you don't you are likely to make yourself more ill in the long-term.
You need to have a very frank conversation with your GP about the nature of your role, your shift patterns and the way that you have been feeling so that they can complete a Statement for Fitness To Work (more commonly known as a sick note). This is a statement of what work you can do and the hours that you can be expected to work; your employer is legally required to put in place the adjustments necessary. You have a legal entitlement to these adjustments in the same way that you would if you were pregnant. It's not your job to worry about the impact on the organisation.
I've had a series of sick notes since my PMR was diagnosed in February. Initially, I was signed off work completely for several weeks before beginning a phased return to work. Most of the notes were for 4 weeks but the latest was for 12 weeks 'given the long term nature of your condition'. I have been on full pay throughout. I checked with my HR manager about how being on a phased return affects my statutory sick pay (SSP) as the latest sick note takes me over the 6 months during which SSP is payable and because I am in work, albeit only part-time, the SSP clock has stopped. Essentially, it seems that I can remain part-time but on full-time pay for as long as medically required. The sick note enables my employer to plan for the long term - far from letting them down, this is much more useful than trying to 'do it all' and phoning in sick and at short notice when things go wrong.
I know that this is much easier said than done. You feel a responsibility to your colleagues and those for whom you care and that is to your credit. I've been there, done that and have the t-shirt. I feel that I am letting down my colleagues and the very vulnerable young people with whom I work BUT I know that my best chance of getting better is looking after myself NOW. With luck that will mean that I am back at work full-time after the summer holiday whereas trying to return full-time and triggering multiple flares and relapses might mean that I was unwell and therefore off work for much longer.
I'm incredibly lucky, it seems that I am managing to make a pretty speedy recovery. There will be many reasons for this but I am sure that prioritising my well-being, listening to the signals that my body is giving me and not going back to full-time work until I truly feel well enough is an important element - although I'd like to be clear that I am absolutely NOT suggesting that those who experience PMR for a long time have brought it upon themselves by their actions. (I'm also not counting my chickens - I know that this illness is a bu@@er and could come back to bite me at anytime!).
Good luck with your decision making but please prioritise your health and wellbeing.
You really need to concentrate on yourself at the moment , or you will keep going down. It’s better to take a longer period of sick leave to you can get settled, but also they will know what they are doing at work regarding cover.
Thank you all for your replies. I did foolishly try to work this morning but had to come home as not fit to continue. Had a talk with my gp and work and I have been signed off for two weeks initially to be reviewed before that’s up. Again thank you all so much , your information and support means so much .
In your time off, do a bit of research about what support is available to you….and take advice from others if you can…and think seriously about what you want to do, and more importantly what you think you will be capable of doing.
I had the same problem as you when I was first diagnosed. I had to have 3 weeks off and when I returned to work I spoke to my manageress explaining about the chronic fatigue. It was agreed that if I needed a 10 minutes break I could take one. Also the pain is unbelievable and I struggled with that. I am a nurse in a busy acute ward and I thought at one time I would have to leave. Thankfully I still work.
Dear Joneskye. Read your post and really felt for you. Glad to hear you’ve been signed off by GP. I can’t add much to the sound advice others have given about sick pay,prioritising yourself etc but did notice you say you work for Nhs highland. If you do work in the nhs occupational health should be able to support you too. Their job will be to assess you and your long term abilities and be able to offer advice and support about what work you can do and maybe be able to arrange redeployment if needed to a less physically demanding role that once your PMR is under control that you could do, or help negotiate different shift patterns. I found them most helpful.
Good luck with it all take care GA.
I definitely tried to do too much too soon. Woke up during the night and could barely move. Today not able to do anything due to pain and fatigue. Definitely a lesson learned.
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