It's human nature to push yourself. But M.E. goes against all common logic. I push and crash all the time. Occationally when am in the midst of being active and i feel almost normal, sometimes I trick myself to thinking iv'e got the illness beat and i'm on the road to recovery
. the weird thing is , i truly beleive it at that moment in time because i guess i like to live in the moment but sadly it ALWAYS ends the same way. Sick in bed for after 24 to 48 hours, and the relaps can last anywhere from 2 days to 3 weeeks
@jimijamesh Yep. When I get a rare "good day" and do something overboard, I'll definitely pay for it the next day, or if I'm lucky, not until 2 days later. Classic CFS.
Hi there, ME/CFS too. I was an athlete & fantasize about exercising too, a lot lately. The summer of 2010, I did something crazy & it was WORTH IT! I went to a dude ranch & on horseback herded 200 cows across pasture with 9 cowboys. It was a pure sun day & the best memory of my life! 2 days later I went to the hospital vomiting out of control, having never looked down to see I had been peeing pure blood! Kidney infections in the triage unit all day & it was worth it! kisses, Francesca
@kaiserMECFS Wowee, I LOVE that you went to the dude ranch, and I bet it was indeed worth it after the face. At least we know we can always plan something, if we also plan for the COMA after it. LOL (Not coma, but you know what I mean....the major aftermath.) I rode horses growing up. Loved it. Rode English. What dude ranch did you go to?
@Suzanne42 I still go after what I want that is possible and i build in Coma Crash Time... I had a girlfriend who needed help and I gave me her my all for 2 1/2 dyas... then that 3rd day.. I said.. I am going down. get me a blanket and a heater. I them cuddled up on her coach and stayed there till she could get me back home several hours later. Then I staid on my couch for another 10 days to recover because I wanted to help her because she does so much for me. I told her not to feel guilty as
@kaiserMECFS I felt so of value to give back to sone who gives to me... BTW... I am going on a weight watchers diet and in the near future, I am going to try to start to work out.. want to try to do it together.... slowly? I used to be a fitness body builder before my illness struck as well as many other things... Kisses, Francesca
I relate to this exactly. PEM is unavoidable it seems. It gets me every time. It always hits the worst on the second day too. Even little 5 or 10 min walks have a cumulative effect, you think your fine but they always catch up to me. I know what you mean about wanting to go go go. you get cought up in the moment and think it won't matter and then whammo.
Suzanne, I'm so sorry. :( If it helps you feel better, for the past 4 months, my exercise is getting from my bed to the bathroom and back successfully without falling, lol. I am the poster girl for "built", lol!!!
I can't do persistent walking without a break (especially a treadmill) with CFS and a heart condition. One time, I had to do a treadmill heart test and they put the treadmill on an incline for only 3 minutes. In that time frame, my heart rate was pushing 200bpm. Needless to say, it took "the wind out of my sails" for the next few days! A short walk, fine - but a marathon, uh - no. =-)
Have you ever tried going gluten free? That was the ONE biggest thing that helped me. It turned out I had gluten intolerance, but it was giving me symptoms you don't expect with celiac or gluten intolerance. It did not give me bowel issues, but only fatigue and neurological and cognitive symptoms. Going gluten free was probably the best thing I did for my health. Just thought I'd see if you have ever tried eliminating that from your diet.
I know how you feel. I have days when I can get 3 days worth of things done, but then I'm wiped out for the next two or three days. It feels great on the few days (Very Few)
@Rich4525 You're right about folks who don't understand. If only they lived in our shoes for just 24 hours, they'd understand. :) Thanks for the comment.
I worked out today.... I am uploading a video regarding it now...
kaiserMECFS 1 month ago
It's human nature to push yourself. But M.E. goes against all common logic. I push and crash all the time. Occationally when am in the midst of being active and i feel almost normal, sometimes I trick myself to thinking iv'e got the illness beat and i'm on the road to recovery
jimijamesh 1 month ago
. the weird thing is , i truly beleive it at that moment in time because i guess i like to live in the moment but sadly it ALWAYS ends the same way. Sick in bed for after 24 to 48 hours, and the relaps can last anywhere from 2 days to 3 weeeks
jimijamesh 1 month ago
@jimijamesh Yep. When I get a rare "good day" and do something overboard, I'll definitely pay for it the next day, or if I'm lucky, not until 2 days later. Classic CFS.
Suzanne42 1 month ago
Hi there, ME/CFS too. I was an athlete & fantasize about exercising too, a lot lately. The summer of 2010, I did something crazy & it was WORTH IT! I went to a dude ranch & on horseback herded 200 cows across pasture with 9 cowboys. It was a pure sun day & the best memory of my life! 2 days later I went to the hospital vomiting out of control, having never looked down to see I had been peeing pure blood! Kidney infections in the triage unit all day & it was worth it! kisses, Francesca
kaiserMECFS 1 month ago
@kaiserMECFS Wowee, I LOVE that you went to the dude ranch, and I bet it was indeed worth it after the face. At least we know we can always plan something, if we also plan for the COMA after it. LOL (Not coma, but you know what I mean....the major aftermath.) I rode horses growing up. Loved it. Rode English. What dude ranch did you go to?
Suzanne42 1 month ago
@Suzanne42 I still go after what I want that is possible and i build in Coma Crash Time... I had a girlfriend who needed help and I gave me her my all for 2 1/2 dyas... then that 3rd day.. I said.. I am going down. get me a blanket and a heater. I them cuddled up on her coach and stayed there till she could get me back home several hours later. Then I staid on my couch for another 10 days to recover because I wanted to help her because she does so much for me. I told her not to feel guilty as
kaiserMECFS 1 month ago
@kaiserMECFS I felt so of value to give back to sone who gives to me... BTW... I am going on a weight watchers diet and in the near future, I am going to try to start to work out.. want to try to do it together.... slowly? I used to be a fitness body builder before my illness struck as well as many other things... Kisses, Francesca
kaiserMECFS 1 month ago
I relate to this exactly. PEM is unavoidable it seems. It gets me every time. It always hits the worst on the second day too. Even little 5 or 10 min walks have a cumulative effect, you think your fine but they always catch up to me. I know what you mean about wanting to go go go. you get cought up in the moment and think it won't matter and then whammo.
jimijamesh 3 months ago
Suzanne, I'm so sorry. :( If it helps you feel better, for the past 4 months, my exercise is getting from my bed to the bathroom and back successfully without falling, lol. I am the poster girl for "built", lol!!!
tslu1970 3 months ago
@tslu1970 PS, this is Justter. ;)
tslu1970 3 months ago
I can't do persistent walking without a break (especially a treadmill) with CFS and a heart condition. One time, I had to do a treadmill heart test and they put the treadmill on an incline for only 3 minutes. In that time frame, my heart rate was pushing 200bpm. Needless to say, it took "the wind out of my sails" for the next few days! A short walk, fine - but a marathon, uh - no. =-)
MrsMemster 3 months ago
Have you ever tried going gluten free? That was the ONE biggest thing that helped me. It turned out I had gluten intolerance, but it was giving me symptoms you don't expect with celiac or gluten intolerance. It did not give me bowel issues, but only fatigue and neurological and cognitive symptoms. Going gluten free was probably the best thing I did for my health. Just thought I'd see if you have ever tried eliminating that from your diet.
disturbedme5 3 months ago
I know how you feel. I have days when I can get 3 days worth of things done, but then I'm wiped out for the next two or three days. It feels great on the few days (Very Few)
that we have any kind of energy like we used to.
The silent suffering that no one understands!
Hang in there!
Rich4525 3 months ago
@Rich4525 You're right about folks who don't understand. If only they lived in our shoes for just 24 hours, they'd understand. :) Thanks for the comment.
Suzanne42 3 months ago