Thinking about stepping away from work…..

[Sunburst001]

I’m allergic to the word “retirement” - surely that’s for old people. I’m only 67. It’s about stepping into the Third Act of my life. In NZ we get a universal government superannuation/pension from age 65. No questions asked. A few years ago I stepped away from more demanding CEO/GM roles into my current “transition” job - Operations Manager (full time) in a team of 8 for a philanthropic organisation. Everything from financial management to buying the dishwasher tablets. Flexibility, plenty of autonomy, supportive boss, WFH 2 days a week, free from the tyranny of meetings, basically I’m the spreadsheet queen in the back room who keeps the trains running on time.

I have been vague about when to stop working - thinking loosely “some time before I’m 70”.

GCA and my response to Prednisone have now brought this question into sharp focus. The commitment to work now gets in the way of making the best decisions for my health and wellbeing. Work is both a blessing and a curse. It provides that constant strand through my life and also distracts me from how uncomfortable I’m feeling. But - it’s coming at a cost. While the job is not stressful in terms of deadlines, unpredictable events or tricky tasks I do find myself having to push sometimes to meet expectations. The days in the office bring both a mental and physical load. Noise levels. Artificial lighting. Poor quality air etc. An hour’s commute each way. Part time options only a remote possibility fir a number of reasons.

This is a tricky few months for us with our Executive Director retiring in August - she’s also 67 - and A N Other starting at the beginning of that month. It would be very disruptive for me to also leave in that July - September period.

I had a chat with my boss, the ED, about leaving some time between end of May (2 month’s notice) or end December. I’m pondering.

I’m now down to 35 g Prednisone with 20mg MTX. You could say I’m “managing”. When WFH I can rest for a couple of hours in the afternoon. Early waking often means I start work at 7am. I have a full hand of ASE’s - including poor coordination, and an autopilot system that is dangerously flawed. Senior moments on steroids. Increased error rates at work.

The question - from what I’m learning on this forum people often have significant challenges when tapering at lower doses of Prednisone. I’m wondering if my ability to work might be even more challenged when I get down around that 10mg mark in the second half of this year.

So would it be better to jump ship earlier rather than later?

I appreciate this is a crystal ball question and it’s also a Nora - no one right answer.

What thoughts from those who’ve travelled this way before me? What factors might you consider?

Homai o whakaaro. (Please share your thoughts - te reo Māori)

🌻

[SnazzyD]

Hello. Just taking on the general vibe of your post and reading between the lines it seems to me you know the answer. You could have said all sorts of things in your piece but I didn’t come away with feeling that it is positive to stay from what you chose to say. It seems you know what to do but are standing on the edge of the drop not sure if your bungee rope will hold. Perhaps our opinion will be like the operative behind who has done it a 1000 times to just give you a push.

It is soooo hard. I gave up my career at 54/55. The best and worst thing I ever did, depending on the day you speak to me. However, I would not have recovered like I did without stopping work. Generally, quitting (if you can) while you are ahead is generally better than waiting until you have 3 wheels on your wagon. When people say they are “managing” my amber light starts to flash.

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

When people say they are “managing” my amber light starts to flash.

Inevitably followed by red light! So agree with what you have said…

[Groggrim]

I agree with Snazzy. Your post reads as though you know the answer but require consolidation of it. My husband found himself in a similar position but pushed on. In the end he had a breakdown and was signed off work. He never went back and has never regretted it. You don't need our permission but I hope the replies help you decide. All the best. GG.

[Excelsior80]

I retired in the summer aged 66 and I'm loving it ... enough time to rest if I need to and time to do things I enjoy if feeling well. Just less screen time is a huge improvement! I hesitated and thought Id miss working but I don't. I do the occasional day or two if my old work is desperate. But wondering how long to carry on with that. It sounds to me as though a new person managing could easily end up stressful ... and for me, I really wasnt sure how the pmr would develop and whether the work could rely on me, or I'd be struggling with it, or feeling guilty about cancelling things.

[Sunburst001]

Thank you all for those very wise words. Plenty of head nodding at my end. It’s lights out time here - 11.19 pm. Will ponder and may respond more fully tomorrow. Ngā mihi. 🌻

[PMRpro Ambassador]

I do wonder what it is that people are afraid of in the word retirement. My husband ditched the NHS as soon as he could - would have gone earlier had they not messed about with "approving" the amount of pension as being adequate to live on until he got his state pension as well. He continued working as a freelance consultant which meant he was still involved in the research environment he loved, albeit in a totally new field. The NHS had rather clipped his wings by not even allowing time and making him do admin, not even patient-related stuff.

It meant work-related costs fell dramatically and we were very well off even on the much reduced income. And as it all turned out, it had been a good move, his retirement was all too short.

You are a long time dead and no-one ever said on their death bed they wished they had spent more time at work.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Me neither... maybe losing their standing in the community, lose of earnings [although you don’t need as much if you aren't working] ,thinking there won't be enough to full their time [rubbish, most retired people say they don't know how they found time to work]..

Appreciate money might be the reason, but as you said you're dead a long time, and shrouds don't have pockets.

[PMRpro Ambassador in reply to DorsetLady]

don't need as much? I think we were amazed how little we missed that extra between a not very exciting pension and his salary - after all, a lot of it had gone in NI and to HMRC every month!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes did mean don’t need..

[Sunburst001]

Thanks everyone for your insights. And for sharing your own stories. Nga mihi.

I've been trying on the idea of stepping away from work sooner rather than later, and it has been feeling like a good fit. I'm totally not afraid of retirement as a concept. I have always seen it as the gateway to new beginnings, opportunities, choices, new learning, more autonomy, time to try new things - refilling my body and soul, exploring... It's the word itself that doesn't give me the sense of renewal I'm looking for. You "retire to bed" or "retire injured from a cricket match" - that's not the sort of feeling I'm looking for. 😀

Quitting while I'm ahead absolutely hits the spot. I want to walk away at the time of my choice - not limp away, or get carried away. The image of a wagon with 3 wheels also resonates. In truth, my wagon already only has three proper wheels. The fourth is one of those emergency ones you put on when you get a puncture - but it's only supposed to be used for a limited number of miles. Thinking I've already exceed that allocation and the ride is now pretty rough.

I have had to leave a job before due to ill health. As GM of a private tertiary provider back in 2016 I got horizontalised by some illness that never got a diagnosis. After 6 months of limping along in an untidy part time fashion I had to bite the bullet and head out the door. Didn't work again for another 3 years. That's partly why I chose this transition job that I'm in now - way less stress than previous environments.

I have long since moved out of the space where my ego or identity are bound up in being an important person in some organisation. That is not an issue.

Finances? This will be interesting. The spreadsheet says it's possible. And - echoing thoughts expressed above, I'm likely to spend less without all the commuting etc. Mind you, with all the additional medical costs I've incurred over the past 5 months I am bleeding money.😳 There is the option of picking up some part time work somewhere - we shall see.

I didn't imagine my Third Act being initiated as a result of ill health. I imagined having the freedom to do long day and multi-day hikes, garden until it got dark, take as many dance classes as possible...... the opening scenes in this Third Act are going to look a bit different. First draft being screwed up and thrown into the bin. New bit of paper being smoothed out and pen is poised........ time for some daydreaming.

Kia pai ngā rā whakatā - have a good weekend.🌻

[PMRpro Ambassador in reply to Sunburst001]

"I didn't imagine my Third Act being initiated as a result of ill health. I imagined having the freedom to do long day and multi-day hikes, garden until it got dark, take as many dance classes as possible"

No-one does - and you are far from the only one on this forum. Many, though, had set off on that imagined road only to have it snatched away suddenly. And there are some very scary stats about how long many professions get before there is a full stop instead of a comma even without PMR/GCA!

But it doesn't mean this is it - it DOES get better. In a year you will look back and see how far you have come, probably not entirely out of the woods into the sunshine but if you are adaptable then the alternative view is often not too bad at all. The mistake is to fight to try to keep what your plans were whatever the effect - PMR/GCA will always win that fight, But if you make adjustments and accommodate it, you can come to an agreement. If I want to go up the mountain, I take the lift both ways instead of the lift up and skis down. I still see the view ...

[Sunburst001 in reply to PMRpro]

"I still see the view". That phrase will stick with me.

I'm coming to see there are probably several stages we might go through when we encounter our diagnosis, begin our treatment full of hope, start to realize what we are actually dealing with, thrash around trying to get control, maybe get despondent, find support and wisdom through other people's stories and experience, gradually grow in acceptance and maybe even some wisdom.......... There's probably much that could be said around that theme.

I tend to be an optimist - think rose coloured glasses and a Teflon raincoat.

While stepping away from work wasn't what I thought I would be doing in mid 2025 - it does offer all sorts of opportunities I hadn't anticipated. My draft of the opening scenes of Act Three are showing plenty of promise.

🌻

[PMRpro Ambassador in reply to Sunburst001]

PS - what was that illness in 2016? Did it fit any of the criteria for ME/CFS???

[Sunburst001 in reply to PMRpro]

Hi PMRPro - CFS? It certainly fitted most of the usual symptoms that are associated with that. Whenever anyone asked about the issues or I had to explain the "missing years" I generally said it was like CFS. Most people have heard of that these days so it didn't need more explanation. No medical person used that term. To be fair, after about 6 months of doing the rounds of medical people who had no answers, I gave up asking. I did try numerous other alternative practitioners, swallowed all sorts of pills and potions, and gave myself willingly to a wide variety of modalities. None of them had any particular answers but they did all agree that I'd run out of energy. 🌻

Is there some suggestion that previous CFS might lead on to an autoimmune issue such as GCA?

I was bouncing around like Tigger in January 2016 - doing gardening for friends, and also paying customers, as a side hustle to my main corporate type job. Yep - people paid me to play in their gardens. 🌻 Towards the end of a hot January I was shifting a pile of leaf mulch over the course of several days. Red runny eyes, red blotches on the skin, runny nose and tightness in the chest. I persisted. Of course. I was bullet proof. I got progressively more tired over the following month - barely able to keep awake at my desk in the afternoons. Moved house with my daughter at the end of that month - first morning after that I had breakfast and then was laid out horizontal. Many doctors. More tests. It was a very weird kind of fatigue. My brain felt "toxic". The strangest kind of feeling.

Suggestions were either it was something to do with inhaling mould and fungal spores from the mulch, or some unknown virus. After about 4 months I moved into what was diagnosed as major depression and anxiety. Two medications prescribed. Not much joy from those. Another medication prescribed. Two years of care from the government funded Community Mental Health team = a revolving door of psychiatrists - each of whom adjusted medications. What else could they do? Several withdrawal plans were recommended - as per "the book". None of which worked and all had to be aborted.

The final act was a cowboy locum psychiatrist who told me to cold turkey off one of the meds as it was so low it could be seen as homeopathic. Against my better judgement I followed his advice and ended up in hospital at the end of a week. The way out of that was adding in two more medications. So now there are four.

At that point I realized this was a no win strategy. I discharged myself from the public system and found an obliging private psychiatrist who was willing to prescribe what I needed and let me run my own withdrawal plans. Which I did with great success. Taking a year for each of three meds, including a generous "stabilize period" between each med withdrawal - using such slow plans that any psychiatrist would just roll their eyes. But - it worked. I had planned to tackle the last remaining medication starting in July this year. However, now that I'm in the PredniZone, I will just leave that until the mud settles a bit.

Seems like me and medications are a tricky mixture.

🌻

[PMRpro Ambassador in reply to Sunburst001]

Several of us have had ME/CFS type symptoms years ago and do feel that it may have been a herald in that it was a strange unexplained autoimmune-like episode.

[Louisa1840]

Hello Sunburst, I'm just over the Ditch in lovely Tassie. You sound like a really self - aware and perceptive person. It is hard making this decision but I know "talking" it over with all of us on this wonderful forum has really helped so, well done for writing in. It's like a good counsellor will not give advice but simply listen and by you getting it all off your chest the way you have the way becomes clear.

Good Luck and keep us in the loop.

[Sunburst001 in reply to Louisa1840]

Thank you Louisa - almost a neighbour - only 2300km of clear sea between us. Mind you, we could fit several European countries into that space. In fact you could drive from Paris to Istanbul and cover that distance. We are a very long way from anywhere down here!

Yes - I am benefiting from reading people's shared stories and experiences here. Many "ah ha!" moments as I find things that resonate with me.

Every best wish to you

🌻

[whitefishbay]

I retired at 67 and am loving life. I’m a free agent. I have been to Japan twice, joined a gym (love the rowing machine), read tons and meet lots of friends for exhibitions or coffee/lunch. Trying to learn Italian too.

My PMR is gone but other things have taken its place…OA for one.

I read an article that said plan your retirement beforehand.

I recommend it!

[Sunburst001 in reply to whitefishbay]

💤Thank you whitefishbay. A plan is always handy - already my mind is filling with ideas about what I might do when I step away from work. Maybe not so focused on physical activity as I had originally thought - but I won't be short of things to do - including snoozing. 💤💤

[Rabbit090]

no helpful thoughts but maybe a shared dilemma…

I was laid off a well-paying WFH product job in big tech in September and with that whole industry being uncertain decided to spend my severance doing a certificate in cognitive psychology for fun and not bother job hunting until it finished in June.

My Takayasu Arteritis diagnoses came in January and now I’m looking at a lot of hospital visits and everything that comes with the Pred side effects (plus more tbd from cyclophosphamide infusions). So now at 63 I’m wondering if my finances will allow actual retirement. I honestly suspect not so am also simply not quite sure where to go from here.

Like you, I could never envisage my life without work but I’ve adapted to it pretty well so far. I’m managing my course well (think of it as about half what a uni student would do) and leaning heavily into trying to find ways to cope with all the new health challenges. I’m now considering a full online degree and maybe onward to a change of career - or at least a change of focus - when and if this whole weird health journey is complete. I’m fully expecting that my high-paying days are over but I’m not ready to stop feeling like I’m contributing.

I’m also making note of various volunteer roles that could be more interesting than, say, working in a charity shop (which has been my only perception of what a retiree might do when I’ve thought about it in the past). Visited a stately home this week and was a bit inspired by an older woman carefully cleaning the books in their substantial library. Seems mundane but actually, I could easily see myself doing such a thing! Hopefully one doesn’t need a masters in conservation!

Best of luck in your decision!

[Sunburst001 in reply to Rabbit090]

Cognitive psychology! Fascinating - and sounds like quite a step in a different direction from a high tech kind of role. I have often played with the idea of doing more study when I had time - so spoilt for choice these days. Thinking it might be around teaching maths which is one of my joys - and something I'm keen to return to in a small capacity, ie 1-1 tutoring.

Best of luck for the next part of your journey.

🌻

[Rabbit090 in reply to Sunburst001]

Funnily, I chose it because of the overlap with AI deep learning systems but now I’m hoping I can move on to something more academic, like research.

I really admire people who have math skills. I grew up in the era of putting girls at the back of maths classes so I am dreadfully deficient in it!

[PMRpro Ambassador in reply to Rabbit090]

Did you speak to her? She probably had a degree or some other professional training in conservation!!!!

[Rabbit090 in reply to PMRpro]

I didn’t. She probably does but it doesn’t keep me from hoping I could do something like it (without a masters).

[Youngpoly]

It was so interesting to read your dilemma and thanks for sharing. I’m new to this site but have spent the last almost two years trying to redefine my career because I know it would be a death sentence to go back to the level of stress I was under, but that was the career I was successful in and could support my kids on. It’s a mindset shift that takes right brain engagement that I’ve never had space for. I have listened to literally scores of audible books, wherever the interest took me, trying to find a path. I figure each book is one interesting person’s entire life experience and that’s a hell of a privilege to hear. I ended up doing level 2 and level 3 BACP counselling qualifications on line and en route learnt a lot about what I was going through. I wrote a list of my personal values. Sounds a bit like hard work I know and it took a week for me to do it. Every time I walked the dog (daily pain guaranteed) I’d wrack my brain and come out with one value. The real jump forward came when I wrote on the back of each value card the opposite value. I turned all my values over on the table and realised that in the public facing job I had spent the last thirty years doing I was living in the opposite of the vast majority of my values. It was a point of total revelation. Not sure if you’ve read the book “the body keeps the score” but I’m sure instinctively we know that. PMR is my second autoimmune and type 1 diabetes was my first - contracted when I started to subject myself to a really pernicious lifestyle. My colleague - whose obituary was published on Thursday- had a ‘great capacity for work’ - he was in the High Court last week and the week before representing children. He was 53. I think, as another member said, we are lucky to have a comma and not a full stop. PMR might just be the messenger some of us might need, if we give ourselves the time to listen.