I have been asked to share my story to a new post as it might be useful for other people in this situation to read.
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
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S4ndy
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Well said. I took myself off the road due to finding myself having blanked out and didn’t dare drive until my Pred was a lot lower. I was 54 too and had to come to the same decision. I so agree with the distinction between doing and being, but for many of us doers, it can feel that not doing is not being. Reeducation was a difficult path and I still struggle sometimes, especially as to me, being in a role was defining for my self esteem. I’m so glad you’ve found a new niche. That’s the positive of these illnesses, it forces one re-examine everything and in doing so, necessitates getting rid of unsustainable patterns. It’s not easy though!
That hit me like a brick! On the 6/12/2021 my GP gave me a brief letter which went, "This is too certify that JohnnoX has had a significant deterioration in his Parkinson's and chronic fatigue. He is no longer capable of any gainful employment and has had to close his (psychology) practice." That was over 2 years ago and I'm continuing to practice but it's getting much harder. I have only a few clients as that is all I can manage. In fact I've just completed a session this morning and the fatigue effects afterwards were palpable. Add the symptoms of brain fog and pain and I'm just about cooked.
Unsustainable patterns!
My beautiful wife encourages me to find a way to stay involved if I must but in another form. Lecturing, volunteering, etc., anything to lighten the emotional load which I reckon will link stress to these conditions in time.
I'm ranting through these symptoms but it's good to part of something here which understands the challenges of carrying on.
That's a really inspirational story and one that I know will give hope to many others on here.
Thankyou for sharing that.
I too had to turn my attitude around and focus on what I could do rather than what I couldn't do before I felt I'd begin to make any progress.
Coping with this condition often means losing some of ourselves and having to give up certain things we previously enjoyed doing.
Accepting this is half way to coping with the condition though.
After diagnosis our lives will change but they don't stop!....far from it, and I personally have discovered that as well as 'taking away' from me, living with PMR has actually given me something also..... new hobbies, new friends, new ideas, new health regimes, new attitudes.
Life is far from perfect, but I'm as well as I can be, I'm 'occupied' and most importantly I'm happy!
I appreciate and note that it's not always like that, and relapses and illness come and go, but like yourself, I'm grateful for everything that I can do and enjoy exploring all the new little adventures that still come my way.
You should feel very proud of yourself, particularly as you've not only been able to improve things for yourself, but also for others too. 😊
Wishing you continued success and positivity in all your ventures.
This is brilliant S4ndy. Especially the way you faced your limitations head on, in a realistic manner and turned it into something so creative and positive for those around you and for yourself. Really, really inspiring!
Great post, and well done to you for using your talents to help others. I'm looking at ways of doing that. I found doing Mindfulness courses really helped me to adapt to my life changes, and a bit of counselling. No doctor ever told me PMR would be life-changing, they implied take the tablets and all will be fine. We each have to find our own way to keep going and turn a bad situation into some kind of positive
I think you are doing remarkably well and are pro active in your situation . I have had to give up so many things \i did before and realise that I must find inspiration by finding projects creatively at home. So I am trying to use up materials I have had for years and make things possibly to sell or give to friends. I think realising how P M R changes your way of living has been a big curve as I have always been so active outside of home . I admire what you are doing . !.
I am working my way through a large yarn stash and a sizeable fabric collection too. I also do diamond art and will have a go at anything crafty I find I get "lost" in a project which certainly is relaxing. Better than housework anyday 😂
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I find I get "lost" in a project which certainly is relaxing. Better than housework anyday 😂
Time to give up methotrexate?
Lansoprazole and/Or Food Before Prednisolone?
Retiring early, does anyone know about financial benefits in uk
See your Dr before a month is up if on high dosage prednisolone
