Spoons?

[Blurry62]

Please explain this theory of wise energy usage for a GCA sufferer. Won't I ever have a normal life again?

I know I have too many questions it seems.....

[Hidden]

healthline.com/health/spoon...

[PMRpro Ambassador]

This link is to a post with a set of links about managing life with a chronic illness

healthunlocked.com/pmrgcauk......

PMR and GCA are autoimmune illnesses - but unlike most other a/i disorders they usually burn out and go into remission in a few years, something most other such illnesses don't. They are worst, most active, at the start and then seem to fade away over time. As time goes on you do start to feel better and I often say to new members of the community here that in a year you will look back and see how far you have come. Yes, the chances are that you WILL have a normal life again - it does depend a bit on how old you are and how long the GCA lasts. If you are already well over 60 and it lasts 5 years (both typical figures) then there is a degree of advancing age to take into consideration. Even healthy older people experience changes in what they can do as "normal".

People who were fitter and used to doing a lot of exercise are able to do more even with PMR/GCA - but rarely at the same level they did before. It is possible to build up what you do - but the "training" must be slow and in very small stages over a much longer period than you might be used to. There are posts from a firefighter who was training for marathons and climbing in the Himalayas when PMR put him in a wheelchair - he is back running and mountaineering again. But it didn't happen overnight and he is sure the slow approach with hydrotherapy right from the start helped.

[SheffieldJane]

You don’t have too many questions. This is what we exist for. The answers help lots of people in the same boat. Fire away!

[Blurry62 in reply to SheffieldJane]

Thank you....I will.

[GOOD_GRIEF]

Yes, you will have a normal life again. If there's anything good that can be said about PMR/GCA, it's that we get better.

Just like any other health condition, we have to recognize that to recover, we need to rest, take our medications and supplements, do the right kinds of exercise, eat a healthy diet, and not exhaust our reserves but build them slowly to achieve stamina over time.

It's a shock, going from being a normally healthy and functioning adult to suddenly being stopped in our tracks over the course of a few hours or a few days. I feel lucky that my PMR diagnosis came rather early in comparison to some people who suffered for months or years without a diagnosis or proper treatment. Even so, some of the initial symptoms make me I think I was on my way to GCA, and would have developed that in short order had I not been so lucky.

Worrying doesn't help us recover. Learning all we can about the condition, building a competent medical team, setting limits on our activities, making space for deep rest, avoiding injuries, asking for the help we need from family and friends, and focusing a lot more attention on our own well being than most of us are accustomed to will result in an easier course of the disease, and perhaps in a shorter journey to remission. Part of that is also learning about the potential side effects of prednisone therapy, and what avoidance strategies are most effective.

Along the way will be better days and worse days. Easier times and harder times. But if you read through these pages, you'll discover that fellow suffers have traveled the world, continued to achieve accomplishments, navigated both ordinary and extraordinary life challenges, and found a satisfying and enjoyable life even as they forge ahead toward remission.

We come here to consult with experts who have more medical knowledge than we do, to share our experiences and wisdom, to laugh at the indignities we've all had to face, to share our coping strategies, to commiserate, to gripe, to rant, to vent - and to celebrate victories small and grand.

You're in the club now, welcomed with open hearts and open minds and open hearts. There are no questions too silly to ask. No fears too big to face. No setbacks someone hasn't experienced. No frustrations we haven't felt. And every advancement - every bit of progress - every victory - is applauded.

You have found a community of friends who really understand.

[Blurry62 in reply to GOOD_GRIEF]

Thank you for your eloquent kind words. This year has Been difficult physically, emotionally and financially. Now, I find myself in three positron of having to locate and attempt to coordinate competent health care providers for my gca ...This site is a blessing! I don't feel quite so alone. Thank you.

[Marijo1951]

I must echo PRMpro's words - 'in a year you will look back and see how far you have come'. I had an eventful Christmas and New Year 2017-2018 (including a flare up of GCA), so I remembered it well when we reached Christmas 2018. I then realised how much better and more 'normal' I felt than the year before and how much more hope and confidence I had for the future.

[Hellyowl]

Just learn to make adjustments, but I really recommend not giving up to many things you enjoy. That's when you can begin to feel sad. When I got GCA I was working full time and in the 3rd year of my doctorate. I had to reduce my work to two days a week (Mostly at home) but I might have had to do that for my doctorate any way. I submitted my thesis last week and was exhausted, but I am now looking for more work and excited about what that will bring. I am rubbish in the mornings, so early starts, 7a.m. trains are an occasional challenge, but i don't refuse interesting events because it is hard. I get stiffness and pain but I found a nice Pilates coach and go three times a week., I have just joined my first gym to do weights because my arms and legs are weak from the pred. My biggest concession is that I now go to bed about 9:30 to 10:00 on weekdays and I used to be a night owl, I plan days at home between days out if possible. My OH brings me tea and paracetamol every morning at least half an hour before I get up.

I often think that because of the challenge to keep up good health when having to take pred I make more effort than my friends in their sixties and sometimes I even seem more active than the ones who don't have health problems.

This is a great forum to share and care

[bunnymom]

It was Uncle Mark who wrote that he seemed to operate at about 50 percent physically and mentally. I used that as a marker for myself as well. In the beginning some days were 20. But after three years I would say most times I am about 70. I don't have to pace myself as much but it is verrry slow going. Self care is everything. I get ready for bed at 715 ! But I have adapted to that. You will find that you will be you own best medical advocate and may see many Drs at the beginning to sort symptoms out. You landed in a great place when you came here. Best wishes.

[yogabonnie]

I love the spoon theory. It is the PERFECT way to explain this fool disease to friends and family. My husband often says.. well, no wonder you probably are out of spoons.. And friend says do you have enough spoons to go here or there. And daughter always saying save those spoons!!!

[Blurry62]

You've given me an idea. I'll use this to explain the energy issue to the grandchildren. Thanks !