I have had PMR for nearly 2 years, and was diagnosed 19 months ago. At first I thought (naively I now realise) that the steroids would sort it all out, and life would go back to normal. I had found this forum before diagnosis, read everything avidly, thought 'those poor things' who have to pace, give up work, sport blah, blah. I just KNEW that it didn't apply to me!
So I carried on working full time and finished my book and got it published, continued to play tennis when I could. All this time I presumed my fatigue was because of working hard, and once the book was finished I would be fine. Well....NO. So reluctantly I realised I was not superwoman and gradually embraced the idea of pacing, and started working half time instead of full time.
Still felt exhausted,so last Friday I hung up my working clogs and retired.
Watch this space.....
Written by
Mary63
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I heeded all advice on here after managing to get down to 8 Preds in April was doing well .Working and resting but this illness is a law to itself. Flare back to 15 Three months of sick the fatigue and side effects of Preds are the worse .
OH visit tomorrow at home hoping they will let me reduce hours at work. Not able to retire yet
I think I have been one of the luckier ones as had very little pain once on Steroids
As my GP admitted last week
Medically they inform us we will be on Steroids for 2 years and then we will be ok
but in all her time as a GP she has not meet one person who this has happened to she says ignore all the side effects once on lower dose they will go and with a positive attitude we will recover .
I say no to people enjoy having time to read ,knit or just do nothing
One thing I have found helpful is Bowen Therapy does not work for everyone but I will try anything
If you're on the correct level of Pred, then you shouldn't be having pain. But what a sensible GP, at least she realises the "2year scenario" is bunkum! Plus, yes, any side effect can be solved - so many doctors get hung up on that side of things, and I think it makes the patients more concerned than necessary.
Hopefully you will get some joy with your OH visit tomorrow, please make sure they fully understand the restrictions that PMR places on you in the working environment.
I had independent review two weeks ago where it was stated due to side effects of Steroids I was not fit to work. When returning to work would be willing to reduce my hours if possible , that I would not be able to work evenings and ideally a job where I was able to sit but move about every half a hour .That my walking was limited also a brief explanation of PMR
18 months ago OH said may need time off in the future so I hope all has been covered .
I have managed to reduce 1mg a week so have gone from 15 to 12 so fatigue has improved so has my blurred vision ,sleep, and anxiety few aches today but its random so hoping it steroid withdraw as only reduced Sunday .
I know fast reduction but went from 8mg end of April to12mg start of May then 15 two weeks later.
This was due to burning pain back of neck which GP said was flare but I wonder is their was a problem X Ray show cervical Spondylitis but this is just normal wear and tear for my age .Pain was still their on 15 but has hopefully now gone .
Am going away to visit family on Wed for 10 days so have two weeks to see how things go and take it from their .
I'm good at the moment thanks, just come back from 10 days holiday with family in Spain -missing the pool already, although weather here in Dorset doesn't make me miss it too much!
Return to work in two weeks time but only if feeling ok will be reducing hours from 7 to 5 a day .
Will be on phased return they will be looking at my rota as I visit clients in their own home but don't drive .So need to keep to buses or limited walking .
I must admit company I work for are brilliant so am very lucky
Ok, that's good. But if you're walking and catching buses between meetings it will still be stressful, so don't be a martyr!
I know it's easy for me to say because I had already retired before I had GCA, but your health must come first, so if it's becomes too much you have to let the company know. Don't keep things to yourself, that way you'll only add pressure to yourself, and delegate as much as you can...that's not always easy I know, especially if others don't do things the way you do!
Take care, and please keep us updated on things...and good luck.
And honestly folks - being retired isn't bad at all. You need a lot less money to live on because you aren't rushing around looking for short-cuts and don't need posh clothes for work. And the nice clothes you have last so much longer...
I didn't like her to start with but have warmed to her good job as I see her nearly every two weeks at the present time.
As for retirement as far as I can see due to the age going up to 67 the younger generation will all be on sick pay for many years before they retire so word of warning to them don't have PMR .
or at least not until their 67
I have enjoyed my 3 months sick cant wait till retirement
Because of range of illnesses i have I effectively retired on illl health at 46. Yes 46. I had spent 10 years getting PACT IN FOR DISABILITY assessment...got new equipment that helped me continue to work. Staff Meeting and teaching were supposed to be timetables so I could take my specially provided seat..so that I could have lunchtime at some point to manage diabetes. Upshot was that non of the meeting were done within the OH assessment parameters..i.e. on 12th floor of building where lifT broke down a lot..the upshot being that by 46 my body and brain said No!! Since then other things like fibromyalgia hypothyroidism and pmr have joined the party.
I have made the most of this low income early retirement but would go back to work if I could be promised reasonable to good health. But when you can't promise employer that you will wake up in a state to work and the stress and anxiety that brings with it and the impact that stress has on body ....viicious cycle. Good luck to all those who find a way to balance life and PMR and continue to work especially those who have no Nhs to fall back on. Now am 56 going on 106!!
I've been fortunate to accumulate enough 'posh' (= nice / quality) clothes, shoes etc. during the past 10 years to last me until I'm 106 years old. Must be my feminine side... (nothing implied)?
My problem isn't about whether to get-rid of any of them - more about how to get out more often to enjoy them!
MB
p.s. What's this thing called 'Retirement'? - an alien concept to me....
well done you! Now you can concentrate on YOU, and you'll probably find that you now have the time and energy to enjoy the good things in life.
Neither PMR nor retirement stop you living, it just means it's slightly slower than before - and much more relaxing - you do what you want, when you want!
How are you feeling? Better I hope. Realize I'm new at this but I feel like I can only do one morning activity, eat lunch by 1:00 then day is virtually done. Life went from energizer bunny to slow crawl. I get into bed at 2:00 pm in the afternoon dragging myself, lie around, eat dinner by 6:00 pm, read or watch TV bed time is around 8:30-9:00. Prod at 5:00 am. Now I'm with friends and family on Nantucket. We are going to the theatre at 7:30 pm tmrw night and I'm starting to panic. Should I just rest all day, skip a 2 mile or less walk? My spoons are disappearing!
If it were me in your situation, I would have a nice restful day, doing as little as is needed so that you are fresh for the evening.
Methinks you still haven't got your spoons organised properly yet. I know it's difficult when you're so used to being able to do anything you want, and multi-task with your eyes shut!
Does it really matter that you can only do one activity in the morning? You have to remember that not only does the underlying illness make you fatigued, the Pred can do as well. For the time being, just do short walks to get a little exercise and fresh air, and if possible reward yourself with a coffee at the end, or part way.
I think most people find the pacing aspect the most difficult to cope with initially, but if you don't then you just feel worse.
I think it's a modern phenomenon that if we're not rushing around like a whirling dervish we should feel guilty, well don't! Learn to enjoy life in the slow lane for a while! It's quite enjoyable when you get used to it....and if you can do it!
Thanks for helping with spoon organization. I appreciate the help. Just not used to one activity a day...feel like a slug! I do get the concept of less is more implementation will be my focus. I love a project!
Here in USA, I can't retire. Hubby had a heart attack last summer and he can't work anymore, leaving only me to pay the bills.. Neither of us is old enough to retire, and just the medical insurance premiums would wipe us out if we didn't have my employer's plan.
So work I must!
Actually, I'm glad. It keeps me going whatever the weather and whatever the day brings. I get 15 minutes in the early morning to feel sorry for myself, and then I get on with it.
I'm one of the lucky ones., I suppose. I can still get on with it...
Great attitude! Slow motion, unpredictable shoulder pain, black and blue under my eyes, bed rest in the afternoon is quite a wicked adjustment. I guess it will take more than 5 weeks to accept the changes. On Nantucket with friends and family. The only mention of PMR has been my friends on the forum! I think they are afraid to talk about it. It's probably a good thing. My eating is so finicky. I will have chicken and vegetables for 3 nights. Went out for lunch and was able to just have a salad. Get up hungry during the night...cottage cheese, blueberries and walnuts.
I am thankful for my blessings. Thanks for letting me rank. I feel better already.
In Nantucket with my sister and 2 friends. Walked 3.1miles (not all at once), came back, so starving, I couldn't wait for them for lunch. In bed at 1:30 in the afternoon! Get up during the night and eat oatmeal, walnuts and berries or yogurt, cottage cheese, nuts and fruit. Helps me go back to sleep.
Do you live in the city? Are there support groups in NY or NJ? Can't believe you still work. I took 2 client calls, I'm a financial advisor to urban school employees, and they exhausted me. Took the summer off and doubt I'll be up to dragging my heavy briefcase in September!
We def will get better. Our miracle is coming! Hold on!
I live in NYC, on Staten Island. I don't know of any support groups for PMR/GCA in the area.
We spend weekends in Southampton. Once I get there, I'm so wiped I either do some serious "couch surfing", or hang out by (or in) the pool.
It's not working that's hard for me. It's the commute. 1/2 mile walk to the bus, ferry across the harbor, 1/4 mile walk to the office. All told, it comes to a mile of walking each way. And I live on one of those very steep Island hills. I have no worries about whether I get enough exercise, though.
I love Nantucket. The Vinyard, too. And the Cape. One of my favorite beaches is Coast Guard Beach.
Maybe we'll both be energetic enough next summer to meet somewhere.
Yes, you certainly do get enough exercise. It's been freezing here since we arrived. It is still great to hang out with people I love, appreciate the beauty and have a change of scenery.
Last night I had a horrible time with shoulder pain. Pain level varies from day to day.
Yes, meeting when we're both stronger sounds like a great idea. I'm happy you go to the Hamptons on weekends. I go to the city. Love the summers because it's empty and the vast number of people don't suck my air!
Going to the doctor on Monday. Take a bus into Port Authority then subway to Columbia. I'll probably go to my apt. after that.
I am giving in and giving up work in October.I thought I would be able to carry on for a couple more years.I do ridiculous hours and it's so stressful there(dental practice).We've had a new computer system and we are so busy on top of that,I've recently decided that I don't like people.I can't cope with the rude,stroppy and demanding public anymore.I'm close to tears most days.
When I was first diagnosed with PMR nearly 2 years ago I read somewhere to avoid stress,overworking and lack of sleep!
Maybe the best emotional survival strategy is to walk away from Stressful situations and put yourself and your health first. That said, I well-know that, for some of us still in our working lives, this can bring other challenges in terms of filling the gap income-wise.
Either way, try to keep you chin-up in the meantime. Your / our physical and emotional health matters most - the other practical things in Life can be worked out, somehow
Thanks Mark 👍I've definitely decided to leave the workplace ,it's been imminent and I can't put it off any longer.I have to put my health first now😃I'm counting the weeks and paydays!
I'm a dental nurse which I enjoy and do reception too ,which I hate! I'm so irritable and stressed most of the time.This morning I was confronted by a patient who got his appointment times wrong but he blamed me! I didnt even book it.I wish it was my practice I'd be laughing all the way to the bank!!
You are just two steps ahead of me. I was diagnosed 5 weeks ago, am in the process of selling part of my business and realize I must pay attention to the PMR invasion. Not happy about it simply because it's change. Not sure how to approach the new chapter. I was always a worker bee, not too many hobbies besides the gym, theatre and cooking. Creating a new life, once I accept my new "companion" should be exciting but I'm not there yet!
My forum friends inspire me to live day by day. Good luck. Stay connected.
Well done. My story is very similar. I am now retiring from work but will build my social life up. Work was high pressure that turned to stress after PMR set in. No deadlines, projects to manage or early meetings and travelling. I wasn't going to accept it either but once I did a great weight fell from my shoulders. This is just a new chapter in my life and I can adapt. Hope it all goes well for you.
Thanks again to even more people who responded to 'Getting my come uppance'. I used to be such a patient person and working as a nurse needing to remain so was really important. BUT i was so irritated by everyone and everything, and remaining kind, calm and empathetic increased the stress and fatigue.
I am very lucky to be able to retire fairly easily as I am 65. Now hopefully I will be able to feel well enough to do the things I want to do rather than what I felt duty bound to do.
Sondra I love your picture. I think it is how I look at the moment! Most people who put a picture on this forum look so nice I don't want to add one at the moment. Agree with you about old age not being for sissies.
Hi Brixhamhampster. Thanks. I did that little doodle in the bad old days when I did a thing called work. It was my desktop display pic. How prophetic - I didn't have a moonface then but I sure do now!
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