It’s the guilt that gets me. Self imposed guilt. The knowledge that exercise is the only thing to slow the symptoms makes it even harder to lighten up, skip a class or just slob out when the effort seems too great. Guilt and fear that if I stop, total immobility will set in and I’ll lose the will and the means to live.
I am with you a 100% and I suppose that is some of the underlying issue causing me to rant: guilt. I think I will write a post on his. As for suggestions...um <<,whistles in the wind>> I’ll have a think :) xxx
You go girl! Say it again, louder! I have rheumatoid arthritis along with P.D and getting too tired is dangerous. I'm also nearly 75 yrs old. Going grocery shopping is exercise for me. Believe me, I would love to walk everywhere like I did in my 20's and 30's , I really just cant.
I don't get bombarded with chirpy gym-bunnies, thank god, but there are still *so* many - far too bloody many!! - medical professionals who don't understand that M.E. is made *worse* by too much exercise. And that "too much" varies wildly from person to person.
Yes, OK, I don't intend to just take root in my chair, but I wish they'd stop saying things like, "Have you tried yoga?" and "Have you tried walking a little more, pushing your wheelchair like a walker?"
Hi Emma, I’m newly diagnosed (Jan. 2025) and have truly appreciated your sense of humor and honesty as I try to navigate this. I have a couple of newbie questions: 1. At what point did loss of motivation start to become at serious issue? 2. Is it an issue all the time or just off times? Thank you in advance.
HI Mary, thank you for your lovely words! I'm so sorry you are with us on this particular roller coaster. For me I think motivation and apathy was one of my earlier symptoms - so I was diagnosed in 2019 and before that I was keenly aware my verve had flatlined. It has moments of reassertion often when I’m least stressed. I still unmedicated which would probably help many of my symptoms but I have chosen a different approach at the moment. Who knows how long that will last! I’m sure that many folks on here will have some better advice and thoughts on motivation! lots of love xxx
Well okay, and I do love your sly snark, Emma, but through those manic but well-meaning communications I finally found what I was looking for since the daft afternoon of my diagnosis ... Maybe this is available somewhere near you, 'cuz for me it was aglow with childhood memories of the one sweaty workout I actually enjoyed!
Hahah I’m not meaning to be as snarky as I sound. It’s frustrating as apathy is such a big symptom for my PD. That sounds good though I shall look into it :) Thank you!
Dang, that's straight up, Emma! I was just starting to notice (even skip past) more of these types of "things" on social - and I am still on the high level fitness-side of PD. The ole adage comes to mind "Everything in moderation"... including our tolerance to the good-intented hype!
It’s the guilt that gets me. Self imposed guilt. The knowledge that exercise is the only thing to slow the symptoms makes it even harder to lighten up, skip a class or just slob out when the effort seems too great. Guilt and fear that if I stop, total immobility will set in and I’ll lose the will and the means to live.
Any suggestions, Emma?
I am with you a 100% and I suppose that is some of the underlying issue causing me to rant: guilt. I think I will write a post on his. As for suggestions...um <<,whistles in the wind>> I’ll have a think :) xxx
You go girl! Say it again, louder! I have rheumatoid arthritis along with P.D and getting too tired is dangerous. I'm also nearly 75 yrs old. Going grocery shopping is exercise for me. Believe me, I would love to walk everywhere like I did in my 20's and 30's , I really just cant.
That’s it some of us have other things to accompany our PD! I can laugh...lots of fitness for my facial muscles though :)
You tell 'em!!!
I don't get bombarded with chirpy gym-bunnies, thank god, but there are still *so* many - far too bloody many!! - medical professionals who don't understand that M.E. is made *worse* by too much exercise. And that "too much" varies wildly from person to person.
Yes, OK, I don't intend to just take root in my chair, but I wish they'd stop saying things like, "Have you tried yoga?" and "Have you tried walking a little more, pushing your wheelchair like a walker?"
Fuckwittage. Insulting, uncomprehending fuckwittage.
hahah the ‘have you tried’ brigade do my heid in!! Middle finger twitching....
OMG I loved this post so much! And I am soooo with you. Thank you for both calling it out AND making me laugh out loud. You are wonderful.
Aww thank you!!
Hi Emma, I’m newly diagnosed (Jan. 2025) and have truly appreciated your sense of humor and honesty as I try to navigate this. I have a couple of newbie questions: 1. At what point did loss of motivation start to become at serious issue? 2. Is it an issue all the time or just off times? Thank you in advance.
HI Mary, thank you for your lovely words! I'm so sorry you are with us on this particular roller coaster. For me I think motivation and apathy was one of my earlier symptoms - so I was diagnosed in 2019 and before that I was keenly aware my verve had flatlined. It has moments of reassertion often when I’m least stressed. I still unmedicated which would probably help many of my symptoms but I have chosen a different approach at the moment. Who knows how long that will last! I’m sure that many folks on here will have some better advice and thoughts on motivation! lots of love xxx
Well okay, and I do love your sly snark, Emma, but through those manic but well-meaning communications I finally found what I was looking for since the daft afternoon of my diagnosis ... Maybe this is available somewhere near you, 'cuz for me it was aglow with childhood memories of the one sweaty workout I actually enjoyed!
https://jeffgreenwald.substack.com/p/ping-pong-people
Hahah I’m not meaning to be as snarky as I sound. It’s frustrating as apathy is such a big symptom for my PD. That sounds good though I shall look into it :) Thank you!
Dang, that's straight up, Emma! I was just starting to notice (even skip past) more of these types of "things" on social - and I am still on the high level fitness-side of PD. The ole adage comes to mind "Everything in moderation"... including our tolerance to the good-intented hype!
haha exactly!! Thank you xx