PMR and a career: Dear friends, I have been on... - PMRGCAuk

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PMR and a career

Pirnilla profile image
21 Replies

Dear friends,

I have been on Pred since dec -17 after having typical pain and raised bloods for 2,5 months. Started Pred medication which works really well for me. I am totally pain free except from a tiny bit of stiffness in my neck for an hour every morning.

I have a job which includes long working hours and takes extreme concentration and controle. I can do my job and enjoy it. Work full time. Now down on 10 mg after starting over with Pred in septembre due to new investigations as they thought I was too young. I am 48.

Now there is an advert on another job that I’ve dreamt about having. It’s a function where you need to be even more concentrated and in controle than where I am at now.

I feel fine for the moment, I am able to live a completely normal life, exercizing and living healthy. But I do know that thing can get tougher when getting lower in dose. Do I dare to have a job that needs all that mental strength from me then? I am optimistic and a bit scared at the same time.

It might as well turn out to be a smoothe journey for me, getting off Pred in a couple of years.

What would you do in my situation?

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Pirnilla profile image
Pirnilla
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21 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

“Do I dare to have a job that needs all that mental strength from me then? I am optimistic and a bit scared at the same time.”

I think that’s how everybody feels about a new job - PMR or not!

I’m sure you are very capable of doing it, but with every new situation comes new stresses, and I would be slightly apprehensive about those - as we know PMR feeds on stress!

You are on the young side, and you seem to be doing okay up to now holding down a stressful job. You may well be one off the lucky ones that gets through easier than others. But no one can guarantee that!

You can only give it a go and see what happens, but you do need to be truthful to your new employers about your illness - that of course may mean they don’t want to take the risk in employing you - all depends if your expertise and ability outweighs the PMR spectre.

As people more intelligent than me have said - “it’s better to go to your grave regretting what you did, rather than regretting what you didn’t do!”

You may never get the chance again - you can but try!

Whatever you decide, good luck.

David-F profile image
David-F

I’m 54 and have had PMR since 2015. Never got lower than 8mg without symptoms coming back. At 10+ I can maintain my senior manager role, and am accepting that it’s a choice at the moment, to maintain my role I need a certain dose. Hoping this will burn out eventually but you may need to accept a few necessary compromises to maintain work performance. I get very fatigued and generally go to bed at 7pm and sleep 10 hours. I’m at my best in the morning so do most of my work from 0700-1500

Tough one. Only you know what's right for you. Search your heart, the right decision is there. Best of luck in whatever you decide.

SnazzyD profile image
SnazzyD

Ooh tricky.

Opinion 1 - Life’s too short, give it a crack, you’re only young, Pred is helping. Carpe Diem.

Opinion 2 - As above but assuming you sail to the lower doses you may find that low doses and adrenal slowness really messes with your function, physically and emotionally. If your job involves risk to others his might be a concern. If there are processes to monitor you or you are very self aware (and honest with yourself!) you could see what happens, knowing there’s an early pull out if you wobble.

Opinion 3 - You may have an autoimmune condition, your body is attacking itself and for a reason and the Pred is just a crutch. It could be the demands of your job or something else so upping the game might be too risky. If it’s not PMR, there’s still something major not right that you need to address.

Opinion 4 - You’re going to to do what!?

I’m sure there are gaps to fill in and I’m sure others will oblige. I loved my job and being challenged all the time. Giving it up at 54 due to GCA was terribly distressing but I’ve learned that it isn’t the only way and that other opportunities will come in time. Flippin hard lesson though! At least I knew I wasn’t functioning enough to be safe so it was a no brainer, must be very hard when you are doing ok and you’re just dealing with what ifs.

Pirnilla profile image
Pirnilla in reply to SnazzyD

Exactly!

I wheened off quite quickly last spring due to that my reumy wanted to investigate me more thorough. I was unmedicated August-Septembre with lots of pain. Still I could manage to do my current job that has a high level of stress with the fatigue and with the pain. So I would like to think I'd be all right with new challanges.

SheffieldJane profile image
SheffieldJane

Is there any chance of doing this new job as a job share, with a partner you are compatible with? There may be a compromise that would allow you to have your cake and eat it. Except, we are not allowed cake ☹️. Happiness has a positive effect on how we are with illness.

As Snazzy says though. Do have a heart search about your reasons for seeking a bigger challenge at this point. PMR can be brought on by being so driven that burn-out occurs. You might be sailing steadily along with Prednisalone currently, however, there will be challenges ahead, this is not an easy illness, rest - pacing, is so essential . Good luck!

artfingers profile image
artfingers in reply to SheffieldJane

Oh that is an interesting idea - job share! I'd forgotten that when my son (age 21 at the time) came and helped me teach for 1/2 a year it was a God send. That is a terrific idea!

Pirnilla profile image
Pirnilla in reply to SheffieldJane

The good thing with that job is that it is very variating in intensity. There may be 4 weeks of crazy working hours and then 2 months with time of lazyness. So actually it would give me more chance to relax in between than where I am at right now.

SheffieldJane profile image
SheffieldJane in reply to Pirnilla

Sounds pretty good to me. Short bursts of activity/ creativity seem to be manageable in my experience.

Harbel profile image
Harbel

Be clear that you would love to have the job rather than loving getting it. One year from now which option do you feel will have enhanced wellbeing in its broadest sense. As others said a very personal decision. Best of luck.

Marijo1951 profile image
Marijo1951

I can't comment from personal experience as I was already retired when I succumbed to PMR. Whatever you choose to do, I'd say think about the other areas of your life and simplify them and/or get help with them as much as possible. At the very least, shop for groceries online, and employ somebody to clean and do your ironing if you can afford it. And, without going too Marie Kondo, keep your living environment tidy and uncluttered, and know where everything is at home and at work, as this will help de-stress your daily life. Good luck!

Sandy1947 profile image
Sandy1947 in reply to Marijo1951

I recently became Marie Kondo obsessed although saying goodbye and thank you to possessions is hooky! My goal is to get my house ready to sell in 3 years or less and possibly move into my studio apartment in NY. I’m working on becoming more minamilistic. Too bad, I love shopping!

Marijo1951 profile image
Marijo1951 in reply to Sandy1947

I like her way of folding clothes and linens, and her practice of using boxes in drawers as containers for similar items. I can't get my head round the 'sparking joy' concept - I mean I really need my vegetable peeler and my scrubbing brush, but they don't spark any joy in me...

Sandy1947 profile image
Sandy1947 in reply to Marijo1951

The box concept gives me anxiety! Seems like an extra step I may not want to take. How do you know the size of the boxes? Do I have to become the best customer at the Container Store? I need simple!

Marijo1951 profile image
Marijo1951 in reply to Sandy1947

Using small boxes stops a drawer becoming a complete shambles of mixed-up items. I'm thinking of one particular drawer in my kitchen which is the repository for all my small kitchen implements, and formerly required me to sort out dozens of things before I found the one I wanted.

enan-illuc profile image
enan-illuc in reply to Sandy1947

Her book is great, and it works...kind of!

PMRCanada profile image
PMRCanada

As others have mentioned, it’s your decision to make. Bottom line, you may feel it is manageable currently, however what about in a year as you are tapering?? The nice thing is you can control the pred taper to suit you at your pace, but the PMR has a mind of its own.

If it were me, and I was feeling as good as you report, I’d go for it. If barriers arise down the road you adjust, and hopefully your employer can accommodate you.

Thing is, making decisions out of fear and “what if’s” can impede growth and quality of life. So can living with PMR sadly.

Wish you all the best with your big decision...please keep us updated.

Sandy1947 profile image
Sandy1947

Go for it! Worse case scenario, it doesn’t work out and you do something else!

artfingers profile image
artfingers

Oh that is a tough decision. Stress does seem to affect the PMR but if you can avoid it in either job through other means (meditation, etc.) then I'd say go for it. I'm in a slightly different boat trying to decide if its time to retire or just keep teaching another year but I'm 67! The PMR has affected me immensely but I find I can still teach. I just last night set up the list of pros and cons so maybe that too could help you sort it out. Good luck and so sorry you have it as young as you are!

Pirnilla profile image
Pirnilla in reply to artfingers

Yes, I am young for PMR. And I don't want it to stop me from living my dreams if it's not necessary.

This is a chance I have been waiting for, I will apply for it and let my higher power decide if it is my turn now or later.

I have had my PMR for 1,5 years. Best case scenario is that I will be through with it in another year.

I can't form my life after something that may go away and I'll become quite normal again.

Sometime. Hopefully.

artfingers profile image
artfingers

Good for you! I think too it is easier when you are younger and have more energy anyway. I also refuse to let PMR hold me hostage (I've had it for 3 years now and I'm down to 5 prednisone a day.) I still teach, kayak, jog, hike, climb mountains - tho all at a slower easier pace. I hope your PMR burns out quickly as it does for some folks. You never know. Cheers!

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