Coping with working full time with PMR

[TooTiredTeacher]

I've read many helpful suggestions on this site on how to manage a heavy workload and PMR. I have a demanding job with a lot of responsibility. I have sought to balance my symptoms (heavy, heavy harness, brain fog, fatigue and reduced confidence) with work for the past few months, with varying degrees of success. I'm on summer holidays at the moment and I am attempting to put supports/measures in place for the upcoming academic year. Any suggestions from other forum users would be greatly appreciated. I'm objecting to my use of the word 'cope' in my title. I don't want to cope, I want to excel at my job, like I did before. I'm still at the reluctant acceptance stage, that is 11 months on.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear you are having such a difficult time -your post just oozes your frustration.

You need to get your employers and union (if you are in one) onside -if you haven’t already. There are a lot of things they can do to make your working environment better for you .

Although it may not apply (as you live in Ireland) this link may help you to see what they should be doing -

citizensadvice.org.uk/work/...

Others in your situation will be along shortly -it’s a common conundrum.

But I’m going to say, and it’s not a criticism but well meaning advice - you need to get your head around accepting your PMR - and what you can and cannot do -until you do that you are going to struggle.

Good luck and hope to get some good advice so you can continue to do a job you obviously love.

[TooTiredTeacher in reply to DorsetLady]

Thank you for taking the time to reply. Your post (and reading all the contributions from others on this forum) reminds me that PMR experiences are on a continuum and I've got to decide where I think I am at the moment. The link to Citizens Advice is certainly at the far end of where I think I am at present. My colleagues, senior team leaders and Governors are all extremely sympathetic and supportive. Whatever I feel I need, I will be granted it. I just need to decide what that is. I manage a lot of people and I feel I should be there for them, as well as the pupils. I accept your advice that I need to get my head around accepting PMR. I have been struggling with this. I do love my job. I'm in my dream job. I would like to continue with it (to the best of my ability) until I decide when to step away. I had thought during Covid (an extremely stressful time managing remote learning, parental expectations and staff well-being) that I might do 5 more years before I retire from the position. I am still optimistic that I will be able to do this, however, we all know that PMR setbacks are unannounced and it's hard to handle stressful and challenging situations in the workplace if you're feeling severely compromised.Once again, I appreciate your response. Since discovering this site 4 days ago, I can't believe how much it has helped me. Anyone I've mentioned PMR to hasn't heard of it. That feeling of isolation has left me.

[DorsetLady PMRGCAuk volunteer in reply to TooTiredTeacher]

Glad we have helped, and obviously it’s your decision, but now at least you have some more options to consider. Good luck.

[PMRpro Ambassador in reply to TooTiredTeacher]

"I would like to continue with it (to the best of my ability) ... "

That isn't what you said in your post: "I don't want to cope, I want to excel at my job, like I did before."

There is a world of difference

[TooTiredTeacher in reply to PMRpro]

Different days, different expectations. Some days the expectations are limited to getting up and dressed. The point you were making isn't clear to me.

[PMRpro Ambassador in reply to TooTiredTeacher]

Living with modified expectations isn't the same as striving to excel and achieve the levels you did pre-illness. My point was that you have adjusted those expectations - and you are now in the world of living well with chronic illness.

[PMRpro Ambassador]

I suggest you have a look at this profile: Kendrew (just click on the name) and read back through her posts as she worked her way through the same journey.

But like DL, I'm going to say you have other things to come to terms with - because while PMR isn't life-threatening it is life changing. And its treatment is too - pred may be contributing to some of your problems, not least as it often impairs judgement. You may think you can do it and put the difficulties down to physical limitations but it can be a lot more than thatand it may not just be affecting YOU, but people around you without you realising it.

[TooTiredTeacher in reply to PMRpro]

Thank you for taking the time to reply. I really appreciate it. Thank you for pointing me in the direction of Kendrew also. However extensively I've read all past contributions, there's new and helpful posts to be uncovered. I thank you for your comment that whilst not life threatening it is life-changing - this is how I need to view it. I haven't been accepting that life HAS changed for me. I've been slow to share with others (including some friends) and I take on board that that will affect not just me, but the impact on them. I read yesterday that if you're ill you should treat yourself as you would treat a friend - I must do that. I also think it's impossible for others to be sensitive and accommodating if I haven't shared my situation/condition. I guess I've had trouble putting it into words.Thank you most sincerely for your response.

[123-go]

I do sympathise! I retired from teaching a good number of years ago and before PMR came along. The profession is enormously fulfilling but very demanding requiring a great deal of mental energy and a great deal of your own time. It is in no way a 9-5 five day week job with many evenings and weekends taken up with all that goes with the job. The mantra for PMR is, 'Rest, rest, rest'!You do have a lot to think about regarding the way forward but it will eventually fall into place for you in one way or another with the help of relevant departments/agencies.

As PMRpro says, Kendrew gives a useful account of her experience.

Take care.

[TooTiredTeacher in reply to 123-go]

Thank you for your response and for your comments. My takeaway from your post is rest, rest, rest. I must do more of this. I've been pushing too much and it's taken its toll. You're right, I do have a lot to think about going forward, not least how I will manage my working life and rest patterns. Sincere thanks for your comments.

[Susan1705]

Hi, I am also a teacher (sixth form) and head of subject and have worked full time through the last 4 years of PMR and 12 months of GCA. I am 62 and am taking each year as it comes now. For me working is doable and am 'functioning'. I am lucky that my partner is older and semi retired and is able to do most of the home tasks to allow me just to focus on work. I have found a pattern that works, I take a full break for lunch and nap when I get home for 30 minutes. Having Covid also helped as was able to teach from home and when we returned to work I was on 4 lessons less a week. Next year I am on 2 lessons less a week and am able to work from home when not teaching. This took a bit of fighting for and had an Occupational Health assessment and consulted the union on how to write letters etc. Last year I managed to get through the autumn term with no full days off (I sometimes need to go home early if in pain or very fatigued). In the spring term I had was only off with Covid, though had flair up pf PMR which remained). The summer term PMR needed a change of meds and had a flare of GCA and was signed off for 3 weeks. I have a great GP who really listens and I decided as my timetable massively reduces for the last half term to just do half days. I also did this last year which I have found really helps. I keep work in the loop and update HR when I have significant changes, we don't have to but I find they are more supportive because I do. I think my head is supportive because he knows I will retire next year and he knows I am in contact with the union and ACAS. I have a really supportive team who look after me, and a very unsupportive head of faculty who when I asked for my lessons to be front loaded to give me the opportunity to leave early twice a week, gave me very last lesson!! I have managed to change to one day, that was a fight though.

[TooTiredTeacher in reply to Susan1705]

Susan 1705 you've brought such relief to me. I appreciate you taking the time to share your experiences. I'm very cross with your head of faculty - putting you in for a lesson at the end of the day seems unnecessarily cruel. I have been headteacher of a large school for 13 years and was assistant head for years before that. In all that time I've been approached by teaching staff, teaching assistants, clerical and ancillary staff for adjustments to their working patterns at various times in their lives, or for periods of absence, and I've bent over backwards to accommodate them. I think the karma has paid off in dividends as I've been 'covered for' in my absences and my 'physically present, mind absences' by the whole team. My Governors are fully supportive and understanding - I don't think I'll be needing to contact my union any time soon. However, I had a very tough last term and in particular the month of June was horrendous in terms of fatigue, brain fog and physical pain. I think I will do better in the academic year ahead with a plan in place. I'm hoping to glean as many ideas as possible and then put a plan in place for the assistant head, staff and governors. I'm sorry to hear you've had PMR for 4 years and GCA for 1 year. However I'm delighted that work is doable and that you're functioning. Well done you! I'm sure it hasn't been easy at times. I'd welcome any tips. Thank you again, most sincerely for taking the time to reply.

[Susan1705 in reply to TooTiredTeacher]

Hi, I think the summer term is always worse for me. I think it is probably cumulative. I certainly have learnt to listen to my body and not fight the fatigue and just rest if I need to.

[Jigsawlass]

I am a music teacher in a large primary school and was working 2 days and 2 mornings , including running choir and orchestra. I was diagnosed with PMR in March . Looking back , I've no idea how I managed to work pre diagnosis! I cannot continue with the hours I was doing as the job is a very active one and fatigue just will not allow it ! I have reduced my hours by just dropping a morning and have asked for help with running choir and orchestra. I also have lesson plans ready for the days when I just can't work . Last term I had some sick days as I struggled into work and promptly came home again! My head is v supportive as is our HR/bursar . I am 57 and have decided that if the reduced timetable doesn't work I will retire. There are other things I would like to do and during term time I have no energy to do much else apart from work and rest ! I had some counselling through work which was very helpful . Not sure this helps you , but being open with your boss and asking for support is vital. Good luck x

[TooTiredTeacher in reply to Jigsawlass]

Thank you Jigsawlass for your response. I really appreciate you sharing your experiences. I have been reassured by your comments and suggestions. As I reflect (over the last month) on my working life and the work patterns I've engaged in, it's a surprise that PMR didn't seek me out sooner as I've often skipped meals during the day and run on empty. When in work things just take over and everyone wants a piece of you and there's no space left for myself. I appreciate your comment that during term time you have no energy to do much else apart from work as this is what I've been engaged in for the last academic year (since my diagnosis). Thank you also for sharing that you had counselling. I hadn't considered it, and yet it seems so obvious. You must have had the symptoms and been working before diagnosis and I can't begin to imagine how difficult that must have been. I was lucky in that I had the diagnosis within 6 weeks of symptoms first appearing. Part of my difficulty in accepting it all is that the 'magic cure' steroids did work right away and I was led to believe (by a well-intentioned GP) that getting off the steroids was my goal. My thinking was that if the lifespan of this illness was 1 - 3 years, I could beat it in 1 (or less). My naivety has only come to full realisation since I discovered this site less than a week ago. You stated: I cannot continue with the hours I was doing as the job is a very active one and fatigue just will not allow it ! is how I was feeling at the end of last academic year. I expected the summer holidays to bring a magic wand and as that hasn't happened, I need to be more realistic about what I can manage, or at least put a plan in place. It has been so reassuring to read your post and share in your story. I appreciate you taking the time and I appreciate your guidance. Thank you.

[York54]

Hi, I too am a retired teacher but fortunately retired before the onset of PMR. It is a difficult pill to swallow , the illness has many ups and downs and you really have to pace yourself and be prepared to rest when you can. I agree with jigsaw lass , be honest with your boss and explain how you feel. I hope you can find a way forward. X🌺

[TooTiredTeacher in reply to York54]

Thank you York54 for responding. It is very much appreciated. I have never been good at pacing myself but PMR is a good master in this respect. I have been forced to step back, do less and rest more and this has been my difficult pill to swallow. It's hard to imagine being able to sleep for an hour midday but being too tired to carry on, but that's been my reality. I need to be more honest with everyone around me as I've been hiding my symptoms and pushing through. There's no cheating PMR though -as Kendrew states - there is no pushing through. 'Be prepared to rest when you can' is good advice and I will attempt to build this into my schedule. Thank you again for your kindness.

[Kendrew]

Hi there

I've somehow missed this post and only just noticed it!

Haha!....Obviously, I'm Kendrew and the person Pro mentioned when she advised you to read my profile.

I won't repeat everything already said in my profile, but I will say that the biggest lesson I learnt in all my efforts over almost 3yrs to return to work, was that if I didn't prioritise my condition, then my health would be compromised repeatedly and I'd continually keep flaring. Yoyoing up and down steroids is not advisable as each taper then becomes more and more challenging to achieve.

I'd worked in Early Years for most of my working life and the 'physicality' of teaching a Nursery class of 26 under fives was just impossible to sustain with PMR. I tried so hard and had the full support of OH and my SLT, but unfortunately I just couldn't make it work. For a long time I resisted any thought of giving up the job I'd always loved with a passion but it increasingly became more and more clear that I wasn't able to do my job to the best of my ability and I was feeling increasingly more poorly and fatigued with each attempt to return to work.

Finally I realised something had to change if I was to have any chance of getting better, so it was with a very sad heart that back in Oct, I was granted full medical retirement.

Nine months on and I know I made the right decision. My condition is much more stable, I feel generally in better health and much of the daily stress and anxiety I would encounter has disappeared.

Many people find they're able to continue working with PMR so please don't think I'm advising you to give up your job, because I'm not. What I am saying is be honest with yourself and put your health first. It may mean some difficult decisions but only you know what you feel capable of doing.

Don't try and 'push through'...it won't work!

Good luck though and hope my experience has helped.

[TooTiredTeacher in reply to Kendrew]

I've read and re-read your posts and bio, Kendrew, since being signposted to it a few days ago. I'm reassured and alarmed in equal measure by your experiences. You've had a very, very tough time and I'm in awe of your attempts of re-entry into the workplace. I appreciate you taking the time to respond to me. I have discovered that pushing through doesn't work. My naivety is starting to embarrass me. Thank you for your suggestion that I need to be honest with myself and put my health first. Like many, many others on this forum (I suspect) that will be a fairly new experience for me as I do tend to put others first. I have a stressful job (there I've said it) and some caring responsibilities for other adults. I am reassured that you say that many people find they're able to continue working with PMR because the only person I know with PMR doesn't work, she's younger than me, and she's in awe of me being able to work. I'm not sure that I deserve her awe as I've been at the bottom of my game for a few months. It's hard to feel like a full contributor to the workplace when you're carrying a heavy, heavy harness and full of fatigue. I aspire to your current status, 'my condition is much more stable, I feel generally in better health and much of the daily stress and anxiety I would encounter has disappeared', but I don't know how I will achieve this whilst working. I've been feeling OK-ish in the holidays, but I fully appreciate that the sledge hammer will return to my shoulder blades when I return to the workplace after the holidays are over. I won't try and push through. I will try to be more self-aware. I will continue to read and re-read your post for inspiration. Thank you very much indeed for taking the time to respond. It is very much appreciated.

[Broseley]

I too am a retired teacher. How many of us are there, and is there a correlation between being a teacher and PMR?I got PMR three years after retirement but in that time we moved house and took on a whole load of new stressors.

In my experience teaching (I was secondary science) has become an almost impossible job for anyone over the age of 50. The demands and stress are huge. I ended up being forced to resign due to a bullying head and there was no support from the union or governors. Two weeks later they offered redundancies!

It was the best decision I ever made. Yes less money but life was so much more fulfilling. I got a job at an FE college helping students with learning difficulties one to one. So rewarding.

If you get support at your school that's great. Otherwise I would look at taking early retirement or at least going part time. It's not worth sacrificing your health for.

[TooTiredTeacher in reply to Broseley]

Thank you for taking the time to share your experiences. You've had a difficult exit from the teaching profession - very cruel. I'm sorry you had no support and then redundancies offered after you left - too sad. Your current role in FE sounds very affirming of your skills and capabilities; I'm glad you're finding it rewarding. I am in a supportive environment and I think I'll be able to make this work. I acknowledge and deeply appreciate your opinion that the demands and stress are huge. They are. You need to have your full health to feel at the top of your game. Physical pain, brain fog, and severe fatigue do not contribute to feeling at the top of your game. I'm hoping to find a route through. Your post is very much appreciated.

[Broseley in reply to TooTiredTeacher]

Thanks for your reply. I retired in 2018 from the FE job and now focus on doing up the house we moved to. Still stress but not anywhere near as much. I now find I physically can't cope with stress - my body responds to it by my head feeling like it's going to explode!As long as you are supported and feel you can still cope that's great. If it gets too much please consider going part time or at least getting signed off for a while and get an appointment with occupational health.

[123-go]

Just returning briefly to say that you WILL find a way through. Accepting your illness and arming yourself with a true understanding of it means you're half way there. It is clear that you're the sort of person who is loyal and caring and a true professional for whom the needs of the pupils is paramount and there lies part of the difficulty in deciding what to do next. I and teachers I knew and still know are prolific 'list writers' 😏. If you are one of those a simple thing like making physical lists such as 'What I can do now' and 'What I can't do now' may focus your mind and lead you to a decision.When you are clear in what is right for you, you will have peace of mind, I'm sure.

I wish you all the best 🙂.

[cycli]

Interesting thread. Good advice as usual. You can't accept anything fully until you have understood it properly and therein lies the key problem with this condition I think. Firstly, many sufferers never knew what was happening to them for years while trying to come to terms with debilitating symptoms that weren't diagnosed. When it was finally recognised and treated the effects were more profound and embedded. I and PMRpro are such. There are many others here. All our stories are different as is our approach to dealing with this. I and others believe that such a path make the recovery and remission pathway harder and longer. If diagnosed early it seems that the recovery path may be shorter and less troublesome. Therefore it is imperative that you don't jeopardise your eventual recovery by adding complications and possibly embedding the condition by stressing your system unnecessarily whilst trying to recover. Our motivation for how we cope now with the new situation is affected by our personalities and needs. What we want to do is unfortunately secondary to what we are allowed to do by this condition. Giving up something you are good at, love doing and wish to continue with is almost impossible unless you have to or simply cannot continue. Only you will know that and will ultimately make the decision one way or another. Until you reach that point you will continue to hope for a return to some form of normality. If you are at that point you will have to make a decision and you will. It may be possible to return to some form of what you did or by then you may have another pathway. What is important now is that you give your body every chance of getting through this because you cannot MAKE it do what you want. We all unfortunately have some things we simply cannot stop doing. Try to limit these to essentials. I have quite a few of those and have therefore to take a more difficult route through medication and symptoms while coping. Much of the advice here has been to try and help you take a route which wont lead to this. You don't want to end up the way I was finally before diagnosis so be careful how hard you wish to push your body and whether or not it is worth the pain I can guarantee waits at the end of that path. I had no idea what was happening for years whilst I pushed on through the condition like many before me. You are lucky in that it has been recognised and is being treated however hard it is to come to terms with. I wish you well on your journey and a painless reduction on your way to remission.

[TooTiredTeacher in reply to cycli]

Thank you for your full, considered and thoughtful response. I printed it out and keep it with me to read when I need a reminder of my 'struggle'. Over the last few months I have taken great heart from your words. I appreciate your time and effort very much. Thank you.

[cycli]

thank you for letting me know that my propensity to waffle on has been of some help.