Phased return

[Helliwelli12]

Started my phased return this week morning's only and at home has still been very challenging finding it hard to remember processes and I have to meet with an occupational therapist about my GCA. I feel like they are monitoring everything I do now Scared I will loose my job now does anyone have any advise? I switched up to 20mg of prednisolone.

[Koalajane]

maybe they are because they are concerned about you, and want to be sure you are okay

[DorsetLady PMRGCAuk volunteer]

Understandable that you are concerned, but your employers may actually be trying to help you… so speak to them with an open mind. If they value you, they will listen…

[Helliwelli12 in reply to DorsetLady]

True perhaps I am being paranoid I did try and explain to my boss today but problem us she has never been very supportive. I will try and hang in there.

[DorsetLady PMRGCAuk volunteer in reply to Helliwelli12]

Speak to the HR department and/or the union rep, if you have one. Your employer has to make provision to enable you to work as mentioned elsewhere… maybe a look at this from CAB -

citizensadvice.org.uk/work/...

[Helliwelli12 in reply to DorsetLady]

Thank you I will take a look

[DorsetLady PMRGCAuk volunteer in reply to Helliwelli12]

…you can always contact CAB for advice… it may not be a quick response, but there is help out there.

I do appreciate it’s a bit of a minefield [my DIL works in HR] but at the end of the day the employer has a duty of care to its employees [you], and a good one will help you as much as they can.

After all [as my son ,CEO of a bank, says] his workforce is his most important asset… and should be viewed as such.

Good luck..

[Kendrew]

Hi Helliwelli12,

I worked as a teacher in a primary school nursery class and as you can imagine, it was very hard work and physically draining too.

I only worked mornings, but after 3 lengthy amounts of time off and 3 phased returns to work, I was finally medically retired.

I adored my job and this was a very upsetting time for me. At 63, I wasn't ready to retire, but nor could I continue to work efficiently and effectively whilst living with the challenges of PMR.

From the very beginning I was 'upfront' and honest about my condition and how it might effect me workwise. I too was monitored and had numerous appointments with HR and some independent medicals.

My SLT were thankfully very supportive and did everything they could to facilitate my return to work but I just couldn't manage it. After a few weeks I was completely exhausted and I'd begin to flare again.

I quickly realised I was never going to be able to both work and manage my condition satisfactorily.

Since leaving my job, I've discovered that as sad as it was, I can now completely focus on my health & well-being and I've felt a significant improvement all round.

Certain 'stressors' have been permanently removed and I can rest when necessary, which in turn, allows me to enjoy being more active when I choose to be.

I didn't check how old you are, so I want you to know that there are many people who do indeed manage to work whilst living with PMR or GCA, but some of us have to accept that for a while at least, work is maybe not an option..... not if we want to give ourselves the best chance of recovery!

I hope you manage to figure out what will be best for you and that whatever the outcome, it supports your condition in a positive way.

[Helliwelli12 in reply to Kendrew]

Thank you Kendrew I am 60 so was hoping to carry on working for a few years yet. My job is very stressful and fast paced had never really suited me perhaps now even more so. I'm finding this a really scary time but it might be time to think about selling the house and down sizing. Perhaps a change of job too both those things are big stressor too hard to know what to do but thank you for your kind words of encouragement

[Kendrew in reply to Helliwelli12]

You're right....it can be a really scary time, because there always seems to be so many uncertainties..... particularly in the first months after diagnosis.

It can sometimes feel that each day presents some new or different manifestation of the condition, or that previously unimagined situations emerge that require consideration.

The most important question you need to ask yourself is always, 'Will this choice or decision aid my health & well-being'.

PMR & GCA are most definitely not a condition you can 'push through'. If you don't treat it with patience, respect and an appropriate response, it will bite back.

I found I felt perpetually conflicted at times but once I fully accepted that I was unwell and I needed to put me first, decisions and choices became a lot easier.

Most of us will recover eventually, but until that time, for some of us, our condition will require us to have a serious rethink about our lifestyle and the things we can change to aid our recovery.

I'm in a much better place healthwise since retirement, mainly because I can focus simply on myself & my own needs without fear of letting others down or disappointing myself.

I'm sure you'll already know in your heart of hearts what you need to do but I wish you all the best for whatever you decide.

[PMRpro Ambassador in reply to Helliwelli12]

"My job is very stressful and fast paced had never really suited me "

I think you know in your heart of hearts that this is an opportunity to reassess a lot of things. I was self-employed so it didn't really matter where I lived. My husband was losing all the things that made his NHS job worth doing - less patient contact and research and more paper trails and fighting the budget cuts. He looked at his spread sheets every couple of months until one day he announced we could manage until his state pension was due a few years down the line. Being retired cuts living costs quite a lot if you go about it right and there is an amazing freedom that benefits physical and mental health plus you can find other far less punishing things to top up the finances. Look at it as an opportunity and not something scary.

[Helliwelli12 in reply to PMRpro]

Your right I should see this as an opportunity but never the less it's scary. I made it through my first week it got a little easier each day although it was only mornings. Next week is morning too but going into the office which will be more of a test for me. I'm just going to take it one day at a time for now and see what happens.

[SheffieldJane]

I really feel for you and am concerned that if you need 20 mgs you are not really fit to return to work. All I can advise is to be open and honest with them about how you are feeling. It must be a nightmare trying to remember processes when you probably have the brain fog of the disease and Pred. You may have to consider retirement on health grounds, heartbreaking as this is, but your health must come first. Sending you all my best wishes! 🌺

[Helliwelli12 in reply to SheffieldJane]

Hi yes my health must come 1st I know but I am not fortunate enough to be able to retire yet unless I am forced to. I'm just taking things as they come right now. I made it through my qst week but know the next 3 weeks will be a test as I will be in the office 4 days a week. I did start to remember processes as the week went on but I'm still very aware it's a very fast paced environment and it may be too much for me only time will tell.

[Allotmental]

Take all the advice you can get. If you are concerned about your employer’s attitude towards you working with your illness, if you are a member of a Trade Union, talk to them. Some big employers also have staff networks you can tap into for support and advice. Occupational health professionals should be there to help you and your employer find ways you can be supported to do your job.

If you have PMR/GCA you are very likely to be covered by the Equalities Act protections and your employer is legally required to make reasonable adjustments to enable you to do your job.

[SnazzyD]

I totally agree with @Kendrew, I had the same painful decision and had to give up my career aged 54 but the best thing I did. It doesn’t help that one starts off with the idea that you just take Pred, the symptoms go away and back you go after a bit of a rest. I had to admit to myself that the reason I got GCA, or the straw that broke the camel’s back, was an unsustainable work and life. It broke my heart but it was the best thing I ever did. The alternative is potentially worse. Going back too early risks, performing badly, feeling like and being a burden on colleagues, exhausting yourself , staying on a high dose of Pred with all the consequences and feel awful throughout. I found that just as I thought I could possibly conquer the world again when I got to 10mg, adrenal insufficiency hit me soon after I dipped below that. You might well be able to work again but now sounds like it isn’t the time. To me having to go back up as high as 20mg to put one foot in front of the other is not good.

HR may be scrutinising you because they have to so you can’t turn round with a case against them for not ticking the right boxes. Also, Pred can make one have a tendency to feel paranoia and I found and 20mg was plenty high enough for that for me.

[Helliwelli12 in reply to SnazzyD]

Thanks for your advice but I felt like I had to try and return to work. I made it through the 1st week but realise I have more challenges ahead.. I welcome the chat with the occupational therapist although not sure when that will be. I'll just keep it honest and see this as an opportunity to relearn processes if I can't remember how to do something. All I can do is the best I can. Things were starting to come back to me this week so I am hopeful it will continue to get better.

[SnazzyD in reply to Helliwelli12]

In the end you have to do it your way as we are all different.

[toniaell]

Hi I agree with Kendrew and snazzy d . I had to retire at the age of 57 - last October. It was a very painful decision as I loved my job but the constant phasing in and trying to juggle work and health became to much. As I was in a church house we've had to move - just done that 2 weeks ago. However not working has enabled me to look after myself better and feel like I have some sort of life. I'm starting a beginners art course today and doing the Nuffield exercise and pain management programme which is excellent! I'm determined not to wallow and enjoy life still. Sometimes the unexpected path is as much as a blessing and joy than the direction we thought we were going in. Wishing you well.

[Koalajane]

hi, I hope you are okay and not getting too stressed about your return to work.

How long were you off work for?

I was off for 6 months before my phased return and I only had PMR not GCA. Before my return I had a telephone interview with an Occupational Health lady and I was very concerned about it and thought I won’t speak to them if they know nothing about the illness. I was wrong, she knew a fair bit and her aim was to make sure I was okay returning to work, working out a slow hashed return and putting In writing any necessary information that could make me have time off work so it would be covered.

The interview lasted for about an hour and really helped. She sent a copy of her report to me and one to HR. I kept this report with me in case, but it was never needed.

I hope your interview goes well and that you feel able to speak to your boss and hopefully get some understanding from her. I think the problem often is that people do not know what these illnesses are and what effect they can have.

Good luck with it all x

[Helliwelli12 in reply to Koalajane]

Hi I was getting stressed earlier in the week but found that later on things got a bit easier but I know working from home was not realistic it will be harder in the office next week. I was off work the whole if November and December a very scary and unsettling time . I was only on 40 mg if prednisolone originally but that dose was very high fir me and so 20 mg seems alot better. I am going to try and be as honest as I can about my condition I just hope I can get my boss to understand just what I am up against .

[CygnusX1]

If you're not in a trade union then I'd suggest joining one. I was a union rep for 13 years and negotiating phased returns that are suitable for the individual was key. I was made redundant in 2020 and diagnosed with PMR in Dec 2021. Fortunately I was able to take the opportunity to retire and I find myself wondering how the heck I would cope if I had to deal with balancing work and the desperate need for an afternoon nap!

[S4ndy]

So sorry to hear of your struggles. I had to give up my business in 2016 because of my health. I was only 54 at the time. I had been struggling for a while and was on 30mg of Prednisolone at the time along with a cocktail of other meds. I was an exercise teacher, activity provider and therapist. I loved my work but it was quite stressful and a lot of driving.I had been struggling to keep going for a year but what made the final decision was that I fell asleep at the wheel of my car! I had been teaching some 10 miles away and was tired on my way home. Luckily it was a microsleep and I didn't crash or hurt anyone else. This made me realise that I couldn't carry on the way I was. So I took a few months off sick but then realised there was no way I could go back to working. That was in 2016.

A lot has happened since then including the death of my hubby of 40+ years and I have moved into a sheltered scheme which has been cathartic. I am still not well enough to even consider working. I still have days where even getting dressed can be too much but in the main I can manage.

Obviously my income has reduced and I am at the mercy of the DWP which can be stressful in itself. Living in this community has made things much better for me. My neighbours are kind and helpful and the housing association very supportive. In return, I have been able to use my skills to enhance the lives of the people living on my scheme. When I moved here, following the pandemic, all activities in the community lounge had ceased. I soon became aware of the utter loneliness of some of my neighbours. So I used my skills to put together an activity program which has now been running for about 7 months. It's changed my life and the lives of those around me. I cannot do a lot but I can share my craft skills and my organisation skills. I cannot do the exercise teaching I used to do but I do a 20 min session seated movement to music after our coffee mornings.

I still have my days when nothing works properly but I can cope with them now. I am on a long term dose of 5mg of Prednisolone now. All the enforced changes I went through were stressful at the time but now I know that there's light at the end of the tunnel. I just wanted to share my story as for a long time I was beating myself up for being ill. I have had to accept all the changes and what that has brought but in a way everything has worked out. I feel we all get so wrapped up in being a human "doing" that we forget to be a human "being". My advice to you is to take each day as it comes, make sure your employer knows how they can help you. If at the end of the day you have to stop working, then just look forward to the other things life has in store for you. My mantra is now this to will pass xxx

[Leafsong66 in reply to S4ndy]

Wow.! Your lovely account of making the most of your skills in your new living situation for the benefit of others, has really encourage me today! Thank you.

I retired early from Occupational Therapy due to my health. I am so happy to have your example!

[PMRpro Ambassador in reply to S4ndy]

Would you post this as a new thread so more people will get the opportunity to see it? I have just replied to someone else who had to stop working - we have increasing numbers of people in similar situations and there is the problem of "what do I live on?" for many. I'm also getting to grips with "what happens next?". Financially I'm fine but there is more than "just" money involved as you so well know!

[S4ndy in reply to PMRpro]

Done as requested xxx

[marionofnorwich]

Listening to all above comments, and many posts over the last couple of years I have noticed that many people who get PMR/GCA are naturally active people ad often living quite stressful and busy lives - not always bad stress but not chilled and relaxed. Bearing in mind that cortisol is a factor in this condition and that by your own analysis the job does't really suit you even without PMR/GCA maybe now is the time to consider a career change or a different way of working? It doesn't have to be total or permanent retirement. I lost my job through redundancy age 55 ( not through ill health but I was very low through at work bullying and now wonder if that is what started the PMR). I didn't think that I could recreate myself but by working at home and concentrating on my skills and what I could do (not what I can't) I have stitched together a living. I loved my job but it had changed and by the time I left it was toxic. I have been much happier since. I work in the arts so there is never any money but I had almost paid off my mortgage. See if you can get some kind of release deal or payoff to get you started and see what you can do to earn a living on your own terms. Just saying.....

[LucilleG]

I went on sick leave and then long term disability from my stressful job over 2 years ago, after being diagnosed with PMR.

My starting dose was 40 mg (GP thought I might have GCA) and I'm now reducing from 4.5 to 4.25 mg. (I struggled with adrenal issues going from 6 to 5.5 mg, but after that, so far, so good - fingers crossed!)

I am currently working on a plan with my employer and will be back to work in two months, working 1 day a week. If things go well, in a month, that will increase to 1.5 days a week, etc.

I would not have been able to do my job at 20 mg of Prednisone. I do feel lucky that I'm able to be off work and really take care of myself without being worried about an income.

Hopefully you can work out a plan where you are off for now (if that is possible) so that you can take care of yourself as you gradually reduce your prednisone dose.

[SpaghettiWestern99]

Hi Helliwelli12 ,

I’ve just started back on a phased return after being off for 5 months.

Like you I’ve been through the mill and several times I thought I was ready but clearly I wasn’t. The forum, colleagues and friends all advised me to put my health first and do not go back too early. This has been sound advice.

It’s too soon for me to tell if now is the right time and I can cope. This week has been tough physically & mentally and the PMR journey is a long one.

Hang in there, be honest with yourself and work and I’m sure you’ll do the right thing.