I just wondered how everybody is managing this disease whilst working. I am Head of Drama at a prep school and have worked throughout my first year of PMR. It has been utterly exhausting and I have not taken any time off apart from (school holidays) to rest and support my recovery. I have unfortunately just got to the point where I do not feel able to continue with such a demanding work load and I am not sure what to do or what my rights are if any? Has anybody else had to stop working because of this illness? It is the chronic fatigue element that I am finding the most debilitating and I can't find the energy to teach and produce 4 shows a year along with parents nights, reports and all the extra work that this job entails. I am on a 4 day week at the moment so I work part time but basically cram in 5 days of workload into 4. Please do feel free to share any info or advise I would be really grateful. Thank you
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Mariemcdo
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Are you in the UK? If so you have rights under the Disabilty Provision of the Equalities Act. You ought to be able to work with your employer to re- design your job in order to accommodate your disability. This includes adjustments to your working pattern, any equipment that would assist you, even the employment of an assistant for you.
I really feel for you. In a normal world you have a wonderful job, the pinnacle of a successful career. It sounds so full on and relentless though. I cannot imagine how you have kept going with PMR. Thinking of my own PMR, I would have had to retire on health grounds. Who knows how long the condition will last and with no scope for real rest and recuperation things can only worsen. There comes a time when you have to put your self first. Without your health you can't do anything.
I don't suppose a sabbatical or some sort of career break is feasible. You need to makes some notes and have this difficult conversation with the Head.
When you say a " perfume" basis I assume that auto correct is making mischief again. Unless you just lend your essence and inspiration to proceedings whilst you heal yourself. That might be the most wonderful thing you have ever done. Something in you is protesting violently.
Good advice from SJane. Also do you have a union representation you could talk to (maybe you don’t - if you’re not in the public sector).
Hopefully you and the headmaster can sort something out.
I know it's not the answer you want, but someone will be along to answer your question.
But fortunately my PMR developed after I retired. To me that fatigue is the worst part after the pain is under control. To me it comes on sometimes like hitting a brick wall. I usually just have have a sleep for a while just to recover.
Me too Pastit but I cant take that kind of rest during the school day....... When I was diagnosed the Deputy head was very sympathetic and allowed me to crash on his sofa for 30 mins per day to re-charge, sadly he is no longer at the school and so no place to sleep!
I got PMR when I was 52. For the first year I carried on full tilt- I am a self-employed counsellor- as my work is not physical, but then I had to cut work down a lot as I kept getting viruses. Over the next couple of years, I kept my caseload lower but it started increasing and this time last year I realised that I had to take drastic measures as I had had PMR for nearly 5 years and was no better at all! So, a year ago, I reduced my caseload to only one day a week. As I cut right down, I realised I didn’t really care about my work and that I was burnt out. I had been using alll my energy on work, with nothing left and the work was beginning to be more stressful as I couldn’t do the other things in my life that gave me balance.
Now I don’t know what is gong to happen work wise, but I have so far been able to reduce the Pred. Further than I did when I was working more. This may even be a chance to change careers when I get better!
I am very lucky in that I don’t really need to work, financially speaking.
Thank you for your response, I feel that I will get the opportunity to recover more positively when I give up this incredibly stressful job, but I will really miss the children as that is the absolute best part of my teaching job! I have such tremendous fun with them it will be difficult to leave.
Hi suzy1959, interesting to read your blog. All I can say by way of support is that I feel for you and can understand your dilemma. From my experience I found that if I didn't have work on my mind, I felt more relaxed with the result of less stress, and we all should know that stress is not helpful in managing PMR.
Hello, I've got the GCA bit not PMR and at 54 had the rug pulled out from under me over a weekend. I've not worked since, so I have no idea how you do it. What a great headmaster you had! Anyway, my not working is partly due to the Pred doses, but now at 14mg I still need an afternoon sleep. If I don't, I feel dreadful but if I do I feel pretty good, though weak from Pred muscles. It has been so hard giving up a salary, identity, purpose, the list goes on. However, it has allowed me to care of myself, put me first a bit, and readjust my priorities. Perhaps I'll go back to work, but that would be a bonus rather than my goal. I think I'm getting better faster now I've accepted that I can't keep going like I was. I don't know what your situation is, but it may be worth a thought.
Thank you SnazzyD for your response, I am lucky as I have a very very supportive husband and though we are not flush with finances we would be able to survive without my wage. I had hoped to retire at 60 and I am 58 so a little earlier than planned. Its all a bit of a wake up call, a message to slow down and look at my life properly!
I was the head of a Primary School when first diagnosed at the age of 55. I decided to give up the headship and I went back into the classroom on a part-time basis until I retired at 60. It was a lovely way to end my career, as being in the classroom was much more fun than a head’ s office! I was able to make the transition to retirement gradually and give myself some time to rest and relax. I am now 63 and I am on 1 mg of Pred, hoping to get to zero in the new year. I have a part-time job in a bookshop, lots of hobbies, a much better social life than was possible during my teaching career and more time to spend with my family.
I went to see my Headmaster on Monday, he was very sympathetic and listened openly to me, we discussed the illness and its implications on my job and I left his office thinking 'Yes I can do this' I will manage this workload!!!
But 6 days on and having worked a nine hour day on Saturday I know that I cannot sustain the workload or the long hours of the job. Juggling 100 balls in the air and this daily multi tasking is just too much and not at all supportive to recovery and I feel totally wiped out. Have decided to hand my notice in and will leave at the end of March.
I am am still managing to keep my dose of pred very low on 1mg per day..... nearly a year into the illness but the chronic fatigue aspect of the illness is the most debilitating and basically I can manage between 4-6 hours per day but after that my battery has no juice!
I worked freelance - so I was able to fit my work sitting at a computer translating around the rest of my life. I could never have gone out to work - I couldn't have got there for 9am for a start!!!
I am in the process of unwinding my career. I did retirement for urban school employees in terrible neighborhoods. When I couldn’t carry the heavy briefcase and felt vulnerable I had no choice but to stop working. I’m not great with unstructured time, but getting better.
I can’t imagine managing work and PMR. This illness is a full time job!
Thank you Sandy1947, I am feeling pretty vulnerable at the moment, not really sure if I can pull off the rest of the term. But sometimes I can really surprise myself too!
Just don’t push yourself. We all think we can do more than we can! We feel like slouches when we take it easy and pamper ourselves. Seems self indulgent so we feel guilty! I’m so getting over that mentality!
I can totally empathise with you and don’t know how you manage to keep working. My own story is I was working as an operations manager which is fairly stressful but I thought I coped with that side without a thought. The fatigue and brain fog meant I just couldn’t function and I hated not being my normal friendly efficient self. I say that as my mood definitely changed to bring a bit of a grump. Pain does pull you down after all. I was advised by my consultant to ask for reduced hours to accommodate my condition and my company agreed to this. But like you I just tried to cram more into a day and worked from home. Eventually, after much discussion with my consultant, I went off work sick. I hated doing this but had got to the point I was not doing my job well and of course the business would start to suffer. So at 59 I applied for early retirement on I’ll health grounds. My consultant was asked to write a report and my case was referred to the pension trustees who agreed to my early retirement. The scheme I was in allowed you to have the pension without penalty for retiring early which financially made a big difference. Taking retirement was not an easy choice but definitely the right one. I can now do some of the things I found impossible as I’m not having to work and can choose to rest I want, and that is often. Any way good luck and I hope you get the support you deserve.
I have only been sick for 7 weeks so far and my life lesson is listen to your body. Without our health, nothing else matters, even our job. Your job does sound wonderful, but too much for you if you are having difficulty coping. Your body is telling you to stop. From your message, it is obvious you know you need to give yourself permission to recover.
I need to work financially, but if I go back now, any stress has the potential to make things worse. I am 53, can't retire yet. All the best in whatever you decide.
I've been off work on leave for a week and a half - I came back on Monday - feeling like a human being - after one day in work - I woke up Tuesday morning with a headache like hell which I could not get rid of all day- a real blinding headache. Today (Wed) I just feel like crying with the severe fatigue - I cannot keep my eyes open. One part of me is so tempted to leave work - which I really don't want to do - in the hope that I might hold on the half human existence. Is this ever going to end.
I know exactly how that feels, sometimes I have a good day and then two really bad days. I am currently trying to work out what to do but more than likely I will hand my notice in at the end of the term. I literally go to work wanting to sleep so its a nightmare! How long have you been ill?
My apologies for the late reply - been one of those weeks - I was diagnosed about 18 months ago but had been unwell with this closer to two years. Whatever about trying to control the pain - the fatigue is just nauseating. On a lower dose now of the pred but every day is just a big struggle gettin to work with this tiredness. Oh I know how you feel - making a big decision like that is very difficult. Its like "next week I'll be a lot better" but its still not happening!!!
My sincere sympathies. I have CNSVasculitis, which although has not all the same symptoms, but fatigue is common to both of us. I don't know how you manage to work. You must listen to your body though, if you don't recharge your batteries when it asks you to you will feel worse the next day. I found that slowing down and taking frequent feats may be inconvenient at times, but it does leave you able to have a life
Can you tell me more about what happened when you came off them and why you cam off them? I am now 1 year into the illness, I am on 2mg and doing well but would love to not be taking any steroids! I have days when I think 'I feel fine maybe its gone' I have 4 good days and trying to not be too hopeful and also just so wanting to be well again.
My Consultant took me off them. tapered me down to 2.5 on alternate days then told me to stop (I had been on them bit less thana year and a half). It was pretty horrendous. Downhill pretty quickly. She wouldn't listen to me after 4 weeks off them - I couldn't even dry myself after a shower my arms were so bad with pain and I could barely put one foot in front of the other my legs were so bad with pain and weakness. My GP put me back on the steroids - so now I'm at 2 mg to try taper it more slow. Had to go back to 5mg to get some hold on it first though. I hate then too - but I couldn't believe how bad things got when I had to stop them.
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