Back to Work??: Some of you will know that since my... - PMRGCAuk

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Back to Work??

Kendrew profile image
Kendrew

Some of you will know that since my diagnosis 2yrs ago, I have made 2 unsuccessful attempts to return to my job working in a nursery class in a primary school. Over the past two years I've only managed to attend work for two half term periods!

I absolutely love my job and love all the wonderful children I work with (and have worked with over the past 12yrs.) They bring me such satisfaction and more importantly joy, so returning to work was always going to be my aim.

The school working environment can be challenging and very hard work but it has NEVER felt like a chore and never have I awoken on a work morning and not wanted to go in.

My plan was to return for a 3rd and final attempt after the May half term. Everything was set....phased return, appropriate change of duties, final meeting with OH and full support of Headteacher and the SLT, but something changed!.....

......Lockdown eased, and my little protective bubble burst! During lockdown there'd been no pressure on me and no reason to push myself beyond my comfortable and manageable little daily routine.....with a few slight variations from time to time, basically I'd get up, shower & breakfast leisurely.....go for a walk..... rest.... lunch.....rest..... yoga....... rest..... dinner.... rest......bed. Easy peasy. No stress, no rushing and nothing beyond my capabilities. Suddenly, the demands of the country opening up a bit more led to firstly a visit to my son's for the day. Nothing too arduous I thought...I sat in the car for 5hrs total travelling time, sat in the sunshine in his garden all day and had a lovely time. Next day I felt more unwell than I'd done for ages. Totally wiped out! I then took a trip to the garden centre and planted up half a dozen patio pots one Sunday. It took my muscles 3dys to recover! I felt shocking. Together with other similar scenarios...all big 'wake-up' calls!......I quickly came to the conclusion that as noble as all my efforts were, I was not going to be able to return to work and maintain the level of functionality I was currently achieving.

So, I've finally pulled my head out of the sand and with an enormous amount of sadness...and a very heavy heart....I've told my Headteacher that I won't be returning to school. I'm going to apply for medical retirement and have the full support of my GP after a long conversation with him yesterday morning.

Many of my friends and family have over the past few months been tactfully and kindly trying to help me see the enormous challenges I'd be facing if I returned to work, but I didn't want to know. I finally realise that balancing the demands of work with managing PMR & keeping as well as possible will be more difficult than I care to admit and yoyoing up and down doses of steroids will not be good for me, particularly as I've noticed that each progressive time this has happened, it's been much harder to taper back down to lower doses and the side effects have been stronger!

There are obviously a few other reasons contributing to why I've had to make this decision and I know you'll all understand what those are.

I'm a fairly upbeat person but today I just feel a little glum and very tearful. I know it'll be ok though and as one door closes another will open. New opportunities will present themselves and I'll now have the time to explore them. Most importantly, I can continue to really focus on my health & well-being and know I don't have to challenge that with the demands of a working day.

I'm sorry this is so long. I just wanted to get it off my chest. I do feel a sense of relief though for both putting it out there in the ether and for having made the decision I have. In my heart of hearts I know it's the right one.

Have a good day everyone.

72 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

You have made the right decision, no matter how difficult it might have been.....and I can understand that you don’t want to leave a job you love. But if you can’t do it justice, then you wouldn’t be really happy would you?

Just concentrate on you now.......and get through your illness more easily.. with less stress.

There is life after GCA/PMR, and I’m sure, if you really want to, you will be able to put your teaching skills to use then in some way,

🌸

Kendrew profile image
Kendrew in reply to DorsetLady

Thankyou. That's exactly what I needed to hear.❤

A good post Kendrew, many have been in your position and most of us with PMR have had to accept the inevitable. Ok I'm a bloke but still I have had to make sacrifices to deal with my condition which is now in my seventh year. Many have been on pred a lot longer. In time you will realize that you have made the correct decision. Good luck and keep well and thanks for your great post.

Kendrew profile image
Kendrew in reply to Pastit

Thankyou. It's just the flood of emotions that are difficult to process at the moment. I realise it's what I need to do but it's not what I want to do..... that old thing of heart v head!!

I've a lump in my throat reading this for you. Also partly that im not totally mad when i feel so horrendous after even the slightest effort of something different in my day. Its a big decision for you, ive been there, your health is more important for you. Very best wishes. X

Kendrew profile image
Kendrew in reply to powerwalk

Thankyou

Hi, I felt really sorry for you as I read your post. I was lucky that PMR didn't strike until I was 76, and well and truly retired. There was absolutely no way I could have carried on working for exactly the same reasons as you describe. Even now, six years later, and down to a half mg pred a day, I could not contemplate going to work.

So, in my view, you've taken the right decision, though I can see how difficult this has been for you.

As you so rightly say, you will be able to do other things, and, if you do too much, which on occasions you are sure to do, then you will be able to take a rest day or two, without the pressure of work.

Good luck, and I do hope things turn out well for you.

Paddy

Kendrew profile image
Kendrew in reply to Charlie1boy

Thankyou. Yes....that was one of my stressors.....quite frequently I'll get a night when I'm literally awake till morning. On those mornings I would not feel up to going into work and would need to rest. Knowing that if I do misjudge something and can take some rest if I need to is one less thing to worry about.

Hello, it really sounds you’ve made the right decision and oh, I can so empathise. It’s sooo upsetting and it is a grieving process, though there is the relief that you now no longer have to try to whip yourself into shape with a deadline for getting better. You certainly know there are people here who have had to make your same decision so say as much as you like and shout into the void with a thousand invisible ears. Green shoots will appear 🌱

Kendrew profile image
Kendrew in reply to SnazzyD

Thankyou. What a lovely reply. Made me cry..but for all the right reasons.

Dear Kendrew, I'm so sorry that things didn't work out for you. Of course, your decision was absolutely the right one. As a retired teacher I remember well a feeling of loss of the profession I loved and the children who brought joy (and sometimes frustration!) into every day. You will have many fond memories of successes and the little ones to whom you made a big difference. Rejoice that you were able to do this.You now have a different kind of life to embrace and in which you will find other ways to feel a sense of fulfilment. I've learned from your posts that you are kind, thoughtful and generous. These attributions won't disappear and although you may feel a sense of loss the gaps will be filled with other ventures-small and measured, please, but satisfying.

It's the end of a chapter but you have the start of another in front of you. Take it easy, spoil yourself and the new beginnings will happen.

I wish you happiness and lots of love in your exciting new story. ❤️

Kendrew profile image
Kendrew in reply to 123-go

Thankyou so much for your lovely message. I was really touched and it means a lot to hear from people who really understand. ❤

Hi Kendrew

Well Done on your decision 👏🏼👏🏼👏🏼

It’s absolutely the best thing for you, you know that in your heart of hearts & that’s why you’ve been able to reach that decision.

I too took early Retirement, l could never get lower than 11mg - back to 15mg - Repeat but eventually l was popping an extra 5mg after lunch to get me through the afternoon & my husband had been driving me back n to work. Mine was a very reactive job in the NHS - you would never know who was coming through the door & what might happen. I thought l’d be devastated as l loved my job but l was fine & just so relieved!

You will adjust, it’s much easier than you think, you can concentrate on yourself & getting as well as possible.

Good Luck

MrsN

Kendrew profile image
Kendrew in reply to MrsNails

The reassurance everyone is giving me, to say I've done the right thing and it will be ok is so comforting and definitely makes me feel much more certain that it was the sensible thing to do. Thankyou for your words and kindness.

Oh how I feel for you. I went off on annual leave 2 years ago last Easter and was never well enough to return, it has taken a lot to get my head around but know that it was my only choice. Going in the car used to finish me off for days but recently I went to see family over an hour away and actually drove and still felt well. I can’t believe I see that as an achievement but I do !! Look after yourself and you will look back and realise it was the right choice 😊

Kendrew profile image
Kendrew in reply to Devoid

Thankyou. What you said resonated with me....I had no idea that just sitting in a car (all be it for 2½hrs each way) would render me so unwell so quickly! I also understand about the tiny triumphs that are massive achievements. For me, being able to go from 15mins walking to an hours walking is huge too. Thankyou for your kind message.

Yes, a good decision but a hard one to take.

Gentle exercise each day, starting with 10 mins out and 10 mins back. Aim to build up slowly to 45 minutes each day.

Gardening, I plant for 10 minutes, sit for 10 minutes having taken a flask and the mobile out.

I bought long handled tools, electric weed burner (as I have never used pesticides). The best thing I use is a long handled pruner which cuts and grips.

In good weather a couple of hours can go by without me aching or feeling tired. It took me a longtime to learn to pace. Going out one day - doing nothing the day before and even less the day after.

When you feel a whole heap better and you will, think laterally so you can still use your skills and be very useful as a teacher perhaps helping young children who need extra help in their primary years.

One ex- teacher now does private tutoring and charges very little, ie petrol etc.

There is always something just around the corner - but at present - in the words of another PMR sufferer (not me) ''Treat Yourself like a Precious Princess'.

Kendrew profile image
Kendrew in reply to jinasc

Thankyou...lots of good advice that I'll definitely take on board.

Hi Kendrew I have been following your posts with interest as I have been off work now nearly 6 months and am desperately wanting to go back. I am sad for you but I know you have made the right decision. Good luck with your next stage of life retirement enjoy your garden at a slow pace. I am a keen gardener grow all my own veg or was should I say. The difference in me from last year is astonishing !!! Anyway just wanted to say hi and maybe send a hug I felt you needed it today 🤗😁

Kendrew profile image
Kendrew in reply to Snuggs

Correct on all counts! Thankyou so much. As I read everyone's kind messages I realise more and more that I will have all the time I need to pace myself and I won't need to worry about rushing anything. I've always wanted to make a water feature in my garden out of an old Belfast sink....so maybe that's my first project 🙂🙂❤❤

PMRpro profile image
PMRproAmbassador in reply to Kendrew

" I've always wanted to make a water feature in my garden out of an old Belfast sink....so maybe that's my first project"

That's fine - but get someone else to do the lifting!!! I know whereof I speak ;)

Kendrew profile image
Kendrew in reply to PMRpro

Haha!..... duly noted!!😄

herdysheep profile image
herdysheep in reply to Kendrew

New role already in first project - as a supervisor!

I was self-employed when PMR hit and doing my best and most fulfilling work as a counsellor. I pushed against it for quite a few years before I was ready to face the inevitable and retired nearly 2 years ago. By this time, I was not enjoying the work any more anyway, so it, finally, felt right.

Now I am just waiting for my husband to retire next year so we can do things together and am expecting the arrival of my first grandchild in the Autumn with all the time in the world to enjoy it.

Kendrew profile image
Kendrew in reply to suzy1959

Sounds like you've got the balance just right now. Thankyou for sharing.

Dear Kendrew, I really feel for you! You have thought deeply about this decision, and have come to the right conclusion I think. The thread that goes through it all is letting go of commitments and pushing yourself versus nurturing yourself . You sound like a 100% person, so that in itself is stressful!

It is sad to say goodbye to your job and 'who you were.' but you are still young so you may be able to go back one day.

The important thing is the contract with yourself now that you won't push yourself any more. That will allow you to heal.

I say all this because it applies to me too!

I find it so hard to change, and I'm still pushing myself although much less!

Be gentle to yourself and best wishes.

Kendrew profile image
Kendrew in reply to Blossom20

Thankyou for your heartfelt reply.

Well you would have had to make the decision in 3 years anyway. Think of it as a glorious relief into a happy retirement.

You WILL get better! We all do in the end. 💐💐

Kendrew profile image
Kendrew in reply to Constance13

Thankyou. 👍👍

PMRpro profile image
PMRproAmbassador

Well done - and lots of virtual hugs.

It WILL get better - all of it, and one day, because you are so young relatively speaking, there will be a viable alternative that you can go back to and enjoy as much as your past career. We are not defined by a job - but by the qualities that let us do it well. There is a niche for you somewhere.

Kendrew profile image
Kendrew in reply to PMRpro

Thankyou. Feel reassured and encouraged.

I can imagine how hard the decision was.. but seems like the right one! I'll bet you were a great teacher... perhaps now you can take pen to paper (fingertips to computer doesn't have the same ring) and write some wonderful advice...anecdotes.. about all those experiences! a blog! a book! Anyway you are always so upbeat and helpful and kind. Keep looking ahead! xo

Kendrew profile image
Kendrew in reply to yogabonnie

Thankyou yogabonnie. I'm being given so many ideas I hadn't even thought about that I am already feeling more inspired.

Hi It will all be ok

I managed to keep working just to two months off retirement them had a Heart Attack I felt like you about my job but soon realized how much stress I was under and how much the company expected of you .

I have just gone back to 15mg a day from 6.5 which is the lowest I have been in 5 .5 years of PMR.

Someday are better then others but we will al get thier eventually just be kind to yourself .

Take Care

Kendrew profile image
Kendrew in reply to Rose54

Thankyou. So sorry to hear about your heart attack. I hope your health has settled down again and you're ok?

Rose54 profile image
Rose54 in reply to Kendrew

Yes I'm fine thank you for asking it will be two years end of this month

I made my Son laugh today as I went to M& S and brought some underwear exactly the same as I did on day of the HA.

When I needed it in Hospital it was still in the shopping bag so he never had any problems finding it .

This time I have packed it away .

I have managed to do 3 Zoom exercise classes a week since beginning of lockdown but due to current flare am giving them a miss .

Have to many side effects from Steroids first thing to do them safely

Kendrew profile image
Kendrew in reply to Rose54

It sounds like you're doing everything you can to stay well and it clearly is working. Also making good decisions regarding zoom class whilst experiencing a flare. It's so important to monitor and manage our own health isn't it. We know our bodies better than anyone else! GPs and specialists aren't always as proactive or alert to things they should be and if we're lucky enough to find a helpful, knowledgeable one then we're very lucky. Onwards and upwards for both of us!😃

I decided to give up work for a few years after my daughter was born. And, even when I went back, I had to accept that my engagement will be limited for some years to come. I am at peace about it now (this is as much as I can handle with PMR), but I understand the nature of your inner turmoil. Especially with such a job, a vocation borne of love. I am sure you will find interesting things to do that will allow you to look after yourself properly. You could try writing a book - I am sure you are capable of it. x

Thankyou. I would quite like to write a children's book but never had the time. Haha!......I could be the next JKRowling!! ......not!! Joking apart....people are giving me some lovely ideas to focus on in the next chapter of my life.

Go for it! I'm sure you have it in you!

I’m so sorry, and understand why you feel thoroughly sad and miserable.

But I do believe you’ve made the right decision.

You’ll have time now, without additional pressure or stress , to concentrate on you and getting yourself as well and comfortable as possible.

I’m sure when you’re symptom free and on a low dose of steroids exciting opportunities will come your way.

Gently does it , it’s Kendrew time 💐🥰.

Big hugs to you xx

Kendrew profile image
Kendrew in reply to Greensleeves

Thankyou for your very kind message

Greensleeves profile image
Greensleeves in reply to Kendrew

You’re so very welcome. I hope we get lots of beautiful warm weather as you continue to get well Kendrew.

❤️

Kendrew profile image
Kendrew in reply to Greensleeves

Definitely. Fingers crossed 🤞

Sorry you have had to make this decision. Hopefully now you have made it you will feel better about it. Good luck to you and look after yourself

Kendrew profile image
Kendrew in reply to Koalajane

Thankyou. I do feel a sense of relief, weirdly!

Leaving work you have enjoyed is hard, no question. When I was facing retirement (old enough (67) not yet my health although I suppose that would shortly have been the case) I read somewhere that one should think about what it was about the work which brought particular satisfaction or fulfilment and endeavour to find ways to replicate that in retirement. It sounds easier than it is, but it is something to aim for.

Dear Kendrew,I’ve been wondering how you’ve been getting on with your return to work. It’s good to get things off your chest and share and I’m sorry you feel sad.

I’m an early years teacher like you and currently undergoing a phased return to work. (59yrs diagnosed a couple of months ago) so I completely understand the physically draining aspects of the job as well as all the other stuff that goes with teaching. Like you I love my job but for me PMR and my multiple roles in school are not compatible friends so early retirement is at the forefront of my thinking.

I wonder- 🤔 does your employer subscribe to a workplace assistance programme? I have found it incredibly useful to talk to a counsellor on a regular basis around acceptance and taking control over decisions. One thing she helped me to work out is ‘what is it that I’m really going to miss about my job?’ In my case it’s ‘nurture and relationships’. Now I’ve established this I can think about next steps and perhaps even consider some voluntary work. This feels positive and something to look forward to. The skills that teaching has given you are transferable to so many roles and I expect you will be snapped up once you are feeling ready.

Reading your posts has really helped me think about my own challenges so, I’d like to say thank you to you for that.

Good luck x😀

Kendrew profile image
Kendrew in reply to Pangolin43

Thankyou so much for those truly helpful and kind words. We don't have any kind of scheme like that in place in my school unfortunately, but I probably would find it helpful to just talk things out of my system a bit with someone like a counsellor. Don't get me wrong....I'm not traumatised or depressed by this turn of events...very sad yes....... but some help to process it all might be beneficial. Thankyou again and good luck with any future decisions you may have to make too.

A difficult and sad decision but the right one, in the end. I'm sure you'll feel like a cloud has moved from the horizon, now you've taken stock of where you're at. I do believe that as one door closes another door opens so opportunities will come along in time. Maybe volunteering at nursery/school where you can choose how much you put in? Best wishes for your new future, give yourself time, eventually all will be well.

Kendrew profile image
Kendrew in reply to 123mossie

Thankyou for your words of encouragement.

That's a huge decision for you to make. You are bound to feel tearful about it.

I would say I'm relieved you have made a decision that will put you first and I'm sure you would be the first to say the same to a friend.

You never know what other opportunities will come your way now this decision is made and I'm sure it will be fine x

Kendrew profile image
Kendrew in reply to Coffeebeans

I know you're right and I know that this is an opportunity to move onto something new but equally rewarding.... I've just got to decide what! Thankyou.

Coffeebeans profile image
Coffeebeans in reply to Kendrew

Oh do start with that water feature. My daughter and I dug a lockdown pond last year and it's full of wildlife. Really rewarding.

Kendrew profile image
Kendrew in reply to Coffeebeans

Any tips would be gratefully received?😃

herdysheep profile image
herdysheep in reply to Kendrew

Don't do it yourself - be a project manager. Not only will that protect you from injury but you may also be able to view the project in different ways.

I know exactly how you feel. This brave decision will facilitate a quicker more thorough recovery. You really, really tried. Children are adorable but the energy needed to work with them is unrelenting. Who knows what the future will hold when you move into strong good health. Xx

Thankyou Sheffield Jane. ❤

ITS NOW 24HRS SINCE I POSTED MY ORIGINAL MESSAGE ABOUT MY DECISION TO LEAVE WORK. I WAS SO TOUCHED AND OVERWHELMED BY ALL THE REPLIES THAT FOLLOWED! THANKYOU SO MUCH TO EVERY SINGLE ONE OF YOU WHO TOOK THE TIME TO RESPOND. I STARTED YESTERDAY FEELING DESPONDENT AND SAD BUT BY THE END OF THE DAY I WAS ACTUALLY FEELING HOPEFUL AND MORE EXCITED AT ALL THE NEW OPPORTUNITIES THAT WILL BE AHEAD OF ME. I ALSO FELT 100% REASSURED FROM YOUR COMMENTS THAT I'D ABSOLUTELY DONE THE RIGHT THING. WHERE ELSE BUT HERE WOULD I EVER HAVE FOUND SUCH FRIENDSHIP, UNDERSTANDING AND SUPPORT.

THANKYOU WITH ALL MY HEART FOR 'BEING THERE', MY LOVELY PMR/GCA FAMILY .

I can totally relate to this. I am a Children's Centre Manager and I have been working from home since March 2020 and was diagnosed with PMR in April 2020. Working from home has enabled me to manage my day and do my hours as and when I could, resting when my body told me to. There is an expectation that I return to work soon (not the most supportive headteacher) and I am not sure at all how I will be able to manage this. I reach retirement age in June but was not planning to retire for a few years as it has financial implications for me. I know we have to listen to our body and I do try to, but we also need to pay our bills! I hope you can work through the 'bereavement' period and come out feeling positive about your decision Kendrew, as I am sure it is the right one. Good luck.

Kendrew profile image
Kendrew in reply to SanG55

Thankyou so much. I really hope you can find a way to manage work and your health too. Best Wishes.

Really sorry for you. I did wonder if you would make it back at such a demanding time when there is extra stress and pressure within our lives and definitely within your job area! It’s sad. Not the same as I wasn’t sick at the time , but Takes me back to my redundancy from a 50 hours a week job, jetting round europe etc which I truly loved! But then I loved a smaller job! And then I loved, just loved, early retirement! And yes, I cried for some days...went home and told David, he said that’s fantastic news, how much are they paying you to go! There’s always another side to every coin that’s why I tell you this story. Concentrate on your health and enjoying small fun things and be happy when you can. New opportunities will arise. Hugs, S x

Kendrew profile image
Kendrew in reply to Pixix

❤❤❤

So good to have this community of people who understand our illness Kendrew. I'm happy that you feel reassured and comforted in all the replies you've received. Time for YOU now😊

Kendrew profile image
Kendrew in reply to SanG55

❤❤❤

Transition is really hard, especially with PMR pulling you down. But the truth is that nothing is wasted. You are entering a new phase of your life, and after the mourning comes new growth. You’ll find you are needed in a different way, and that there are exciting experiences ahead when you have more time time to listen and reflect, certainly fresh paths to engage with children. Thank goodness for modern technology, such a boon for us who have to ‘rest’. You sound lovely, your symptoms will ease over time, especially as you have set up a less stressful framework to your day. Next time let your son come to you 😀. Have a grey day then see rainbows xx

Kendrew profile image
Kendrew in reply to Thelmarina

Thankyou for that. Really resonated with me. A good formula for moving forward. ❤

Ha! You won't have time to do anything... but respond to all of us!! I love seeing all this encouragement. It says a lot about you.

Kendrew profile image
Kendrew in reply to yogabonnie

What a lovely thing to say......I think we all do a really good job of being there for each other when we need it.

I am a bit late to this, but I can only endorse the view that it sounds like the right decision, however hard. In many ways it is good it was a hard decision. To love your job is quite a plus these days and harder to go when you think you still have more to offer. Excellent suggestions above - take your time to get used to it and enjoy the next phase of your life.

Dear Kendrew, I read your post yesterday and felt so sad for you but didn't know quite what to say. Anyway here goes, I think you have done the right thing for you and your health and hope in time you will come to appreciate that and feel better about it. Im sure too that staff and pupils will miss you immensely. I honestly hope you will find something rewarding to do that will bring you happiness, life has a very special way of sorting things out for us no matter how hard we plan. You come over as a very lovely, kind caring lady who always responds to people here in a nice way and Im glad that you have had such a good response. With Best Wishes

Thankyou for your lovely message. So supportive and encouraging. I'm feeling much more positive today and a real sense of relief.

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