I'm very interested in hearing what people have found possible in terms of working from home, or working in a reduced capacity because of their health.
It's possible that my employer may end my contract because I cannot continue in my current role (it involves a long, busy and fast-moving day with lots of walking and commuting). I'm trying to see this potential outcome as a new beginning and would like to think about what I can do next. I have various skills and experience across lots of sectors. I'm quite happy to do all sorts of things but I'd love to know what other people do or what ideas you have. All ideas and suggestions very welcome!
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CloudGazer6
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I'm not sure I can be of much help except to say that over the last 4.5 years I have struggled with work. I am a counsellor , self-employed and working from home so not too difficult physically bit actually very tough emotionally. After the first year or so, I found I was getting all sorts of viruses and so cut down my work considerably, and the viruses stopped. Since then I have been careful but was slowly doing more and more and just recently have realised that I am exhausted and burnt out and the PMR is not getting any better either. I have therefore decided , with much soul searching and upset, to drastically reduce my work and only work with people I want to work with, so they enhance my life.This does, of course, have financial implications, but I realise that I really need more joy in my life and quality is more important. I think that stress may be affecting my recovery.
I have been in some discussions with PMR/GCA UK about the possibility of having a forum especially for those of us who work as I think it could be very useful to pool our experiences and maybe even look at becoming a pressure group if we need to with regards to benefits, occupational health, employers etc. This is in hand at the moment, but let the charity know if you would be interested in this.
I really like the idea of a working group. We do have unique challenges. I am in the US so some topics would not apply to me as much but believe I would benefit from the experience of the group. Wishing you well today😊
I too work full time and must continue for 4 and a half more years. I am in the US and would not qualify for any type of disability. I found my emotions to be the work issue and the fatigue secondary. I am an administrator/teacher of an elementary school program. I found myself becoming very irritable. Especially challenging when trying to reduce meds! I was able to move my schedule around so now I go in at 6 am since I wake up at 4 am anyway due to the meds, The mornings job is quieter with a smaller group and I am enjoying the change. I also come home in the middle of the week early to rest. I find I don't sleep more but spend time sitting in my chair. Many times I can't even focus to read a book. I have been trying to figure out PMR since February and it is getting a bit easier to kmow what to do. Good luck to you as you reform your work. May you find joy in the change as I have.
Thank you very much, Suzy1959 and bunnymom. Lots to think about. I completely agree with you both about seeing the positives in enforced change and finding ways to improve quality of life and who and how we spend it with.
A work group sounds a very interesting idea. Please keep me updated.
I gave up full time work 11 months after being diagnosed with PMR/GCA. Having had flares and struggling with exhaustion and really not improving, felt it was my only option. (working reduced hours, in this role did not work. )
In my spare time I was a reiki and crystal healer and decided I would pursue this, and also teach spiritual development. I have been doing this for several months now, and work is coming in nicely, I will never get rich but It keeps the wolf form the door. I chose my hours and spread my appointments out. I would never had dreamed I would do this as my main job, it is stress free, I meet wonderful people and most importantly I can rest when I need to.
I have not had a flare since giving up my proper job and am reducing preds nicely, (using the dead slow method) I am feeling more myself, and believing there is light at the end of the tunnel.
I would love a group for working men or women as I feel we are In the minority and do need to support each other. I returned to work two weeks ago only catching up on emails etc for a couple of hours each day yet I have been exhausted and having to go to bed on my return to home. My OHS has mentioned it may be worth applying for medical retirement even though he knows I will eventually get better because who knows how long it will be before I get ill again. This is my second bout within five years.
I am definately keen for a pressure group for those of us struggling to work with PMR....After 2 and a half months I am still in negotiations with my line manager and above regarding a change in working pattern and NOTHING yet has been decided!!! You would be forgiven in thinking that I was asking to be paid for not working rather than swopping hours about so as to try and avoid going off sick and incurring a sickness record and avoiding an impairment of the service I am meant to give!!!!! Rant over.....
I work full time in a home based job where I can be flexible with my time. I realise I am very lucky to be able to do this although I still find it a struggle. For me it is the concentration aspect that I find difficult. I find when doing particular piece of work that involves a lot of concentration then I am totally exhausted. Also while doing this kind of work I can forget the time and then really struggle to move after sitting too long.
I have also found that working full time takes up all my energy and I basically have no life. When I am not working I am resting. If I do anything other than rest at the weekend then I struggle to work.
I'm only 52 so some way off retirement and still have one child at school and a mortgage to pay. So no easy solution as reducing hours would probably require me to move house which in itself would be really stressful.
I have a really understanding work though and I can spread hours during the day and rest but I definitely think that working with pmr seems to mean that it lasts longer and reducing pred takes longer.
I am working full time and cannot do anything about my hours. Initially it was a horrific struggle and it was only managed because the team I have worked with for years covered for me. I am now able to do more and more. (A year plus later) I do find I'm more likely to voice my opinion/be cranky and I have difficulty physically getting down to the floor and small chairs my preschool children use. I have started with physical therapy to help me hopefully regain strength. After work I find that I just sit! I am not keeping my house the way it should and doing less socially. I think it contributes to feeling bad so I am making an effort to get out, even if it's for lunch or coffee. As I get stronger I want to get back to hiking as well. I only managed twice this summer (easy, shorter ones with understanding friends). But I feel like I really accomplished something!
I was diagnosed with PMR and have struggled with reducing PRed, , but am now on 11 which is the lowest ever but a lot of my pains have flared up especially wrists arms shoulders and neck plus I have a huge lipoma on my neck which is having to be removed. I am a manager in a call centre and was working between 40 and 50 hours weekly. I was on sick leave for 5 months due to the PMR (before it was diagnosed and pre Pred) I returned on fixed shifts and after 6 months am struggling energy wise so have reduced to 30 hours from this week, this does have a financial effect obviously , but not sure what to do after that if still feel how I feel now, I like my job and it does give me a reason to get up in the morning, some days better than others but working leaves me very little energy for anything else, my mobility is very reduced, can't stand or walk for more than two minutes at a time, my lifestyle has totally changed, I cancel wedding invitations I don't go out shopping, thank heavens for the internet , my whole life balance has bee turned in its head. I have gone from a healthy outgoing 60 year old to an introvert stay at home old lady! Sorry for the long reply but not in the best place at the moment xxxx
I am lucky enough to work from my home studio with occasional classes outside - which I can pick and choose and for which I always have an assistant. This allows me to dictate my working hours and practices and fit them in around my need to rest or stretch. It does allow me to work to my strengths and to undertake tasks when I am at peak energy levels rather than when the work place clock dictates.
I was already working from home when PMR struck but I cannot imagine managing my workload and my health issues within a structured workplace. I hope you can find something that works for you.
I think a fundamental problem is the entrenched idea that the only people who develop PMR are elderly - the average age of diagnosis is still claimed to be 72! That (IMHO) has a great deal to do with the fact that if you are younger you really struggle to get a diagnosis on the grounds you can't possibly have PMR, you are too young. This despite the fact that the latest guidelines say "Over 50" - which is still too old.
Most of the ladies who founded the charities are older - several are now in their mid to late 70s. I am quite a bit younger and was only 51 when the symptoms first appeared - but am now lucky enough to have been able to take early retirement along with my husband.
It needs younger people like you who are stuck in this warp - but you are unwell AND struggling with working. So if anyone has any ideas - shout out and I'll pass it on!
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