It’s nice to see someone on the milder side of ME/CFS. Even though I’m bedridden 95% of the time, since getting help for my MCAS,hEDS,and POTS I don’t crash badly after activity. I still can’t really do anything and require almost full care, but the lack of crashes from PEM have actually given me a bit of imposter syndrome and made me question if I ever had ME/CFS. Obviously I have it (several doctors have confirmed) but it’s nice to see others who have it but don’t crash as badly while still needing rest most of the day, it makes me feel a little bit better.
I'm happy to hear this video made you feel better, Ruby, and very sorry to hear you're so severe. To clarify, I can only do the things I can do because of 22 years of searching for and trying effective treatments, plus LOTS of rest. I take PILES of pills (medications & supplements) 6 times a day, need 9-10 hours of sleep a night just to function at all, and can't get through the day without a nap in the afternoon. I'm very grateful that the treatments and rest have helped me, but I'm still very limited. During this trip, still dealing with the effects of COVID from 2 months earlier, I could do even less than usual and definitely felt the effects of my little bit of morning activity each day. Of course, I recognize I'm in much better shape than many other patients, including you. It's great that you've found some helpful treatments, but I encourage you to continue trying treatments. There's a page on my blog (linked in the notes below this video) called Treatments (you'll see the tabs across the top of the blog page, under the blog title) that provides a summary of all the many different treatments that have helped my son and I. If your POTS is already treated effectively (and your HR is now at normalish levels, even when standing), then I'd recommend correcting sleep dysfunction next - that was the first thing my doctor did, back in 2003, and it helped my son and I both SO much - I'm sure that played a large role in us both improving rather than declining like so many others - good sleep is so important. Thanks for taking the time (and energy) to leave a comment and share your story with me - I wish you peace and better days ahead!
Thank you so much for sharing this beautiful camping experience with us. Soothed my soul.
You're welcome! Camping and being outdoors IS so soothing and peaceful - I'm glad you could experience a bit of that!
really beautiful sharing~have a good day-😊
Thanks!
It’s nice to see someone on the milder side of ME/CFS. Even though I’m bedridden 95% of the time, since getting help for my MCAS,hEDS,and POTS I don’t crash badly after activity. I still can’t really do anything and require almost full care, but the lack of crashes from PEM have actually given me a bit of imposter syndrome and made me question if I ever had ME/CFS. Obviously I have it (several doctors have confirmed) but it’s nice to see others who have it but don’t crash as badly while still needing rest most of the day, it makes me feel a little bit better.
I'm happy to hear this video made you feel better, Ruby, and very sorry to hear you're so severe. To clarify, I can only do the things I can do because of 22 years of searching for and trying effective treatments, plus LOTS of rest. I take PILES of pills (medications & supplements) 6 times a day, need 9-10 hours of sleep a night just to function at all, and can't get through the day without a nap in the afternoon. I'm very grateful that the treatments and rest have helped me, but I'm still very limited. During this trip, still dealing with the effects of COVID from 2 months earlier, I could do even less than usual and definitely felt the effects of my little bit of morning activity each day. Of course, I recognize I'm in much better shape than many other patients, including you. It's great that you've found some helpful treatments, but I encourage you to continue trying treatments. There's a page on my blog (linked in the notes below this video) called Treatments (you'll see the tabs across the top of the blog page, under the blog title) that provides a summary of all the many different treatments that have helped my son and I. If your POTS is already treated effectively (and your HR is now at normalish levels, even when standing), then I'd recommend correcting sleep dysfunction next - that was the first thing my doctor did, back in 2003, and it helped my son and I both SO much - I'm sure that played a large role in us both improving rather than declining like so many others - good sleep is so important. Thanks for taking the time (and energy) to leave a comment and share your story with me - I wish you peace and better days ahead!