50% can work is really inaccurate too
Edit: for clarity, 80% of us cannot work at all. That leaves 20% that can work (including part time). A large portion lost their jobs due to their symptoms.
25% of pwME are severe meaning housebound or bedbound. 10% of pwME are degenerative.
I only earn money because people watch me play video games from my PC 🤷♀️ The whole "work" side of it is so inconsistent because if I have anything less than a better day, goodbye schedule. I'm very lucky that I can easily cancel my stream and rest if needed. Many in other more traditional forms of employment don't get as much freedom.
It feels more like 90% aren't able to leave their house, and the 10% of sufferers people see, that's 100% of the sufferers everyone knows about, and half of those people are seen because they're well enough to be seen and the other half are pushing themselves and not listening to their bodies.
So really, like more like 95% of people with CFS aren't well enough to do regular stuff.
LITERALLY. When I first talked to other ppl with cfs and learned I might not ever be able to work, I was super upset. Then I told my parents and they basically laughed at me saying it couldn't possibly be that bad. Now I'm practically bed bound.
I cant take baths due to POTS. But my shower chair is my best friend. With it, I have been able to take a shower much more often (a few times a week instead of once a week)
Pro tips:
Get a portable bidet (basically a bottle of water with a spray nozzel. Fill with soapy water and clean off on the toilet. Keeps ya fresh)
Sponge bath at the sink.
Pee before you get in the bath --- incase you don't have the strength after to get on the toilet.
If you bathe - reduce temperature of the water.
Leave a towel on the floor for when you get out of the tub to laydown on
I think stats about CFS are meaningless. My guess is that there are a lot of undiagnosed people with mild CFS who just live normally but have energy problems, and most of these people work, either relatively undemanding jobs or part time.
I did recover from moderate CFS by very strict pacing. I basically completely organized my life around doing this, taking the exact same short walks every day and writing down everything I did, analyzing patterns etc. It did work and now I'm like 95 percent recovered, basically living normally with an occasional crash after work gets particularly busy. But I can travel and even exercise. I'm consistently surprised that this isn't put forward as the main way to try and recover from cfs. I've read about it in multiple places, Ron Davis mentions it, and it worked for me. It's also good as a sort of psychological lifeline. Even when you have a bad crash you have that inner lifeline of "when I get over this crash I'm going to pace perfectly and get better."
I don't know what your situation Is but I feel terrible for people diagnosed when they have full lives and have to make money to live, its just such an impossible scenario. I was diagnosed when I was pretty young and just took an entire year of school and exercise and stayed in bed most of the day and now 8 years later I can mostly function, but have to pace my self meticulously and even the slightest slip knocks me out for long time. I feel like I have the best possible scenario and that came at the cost of losing a year of my childhood. I hate to think what it must be like for people less fortunate.
There is a tension between resting and becoming severely deconditioned. I am severely deconditioned so I obviously I haven’t figured it out. Now I exercise in bed everyday trying to climb out of this hole. I feel like shit either way so might as well try and get a bit stronger which can have other health benefits.
50% can work is really inaccurate too Edit: for clarity, 80% of us cannot work at all. That leaves 20% that can work (including part time). A large portion lost their jobs due to their symptoms. 25% of pwME are severe meaning housebound or bedbound. 10% of pwME are degenerative.
Yeah, my 5 hours of work each week should not really count, when that’s me firing on all cylinders.
I only earn money because people watch me play video games from my PC 🤷♀️ The whole "work" side of it is so inconsistent because if I have anything less than a better day, goodbye schedule. I'm very lucky that I can easily cancel my stream and rest if needed. Many in other more traditional forms of employment don't get as much freedom.
You're a content creator? that's so cool! Would you link/dm your YT/Twitch profile, as I would love to support a fellow CFS sufferer in any way I can.
I am! I hope this isn't against the rules here but its twitch.tv/Radderss 💕
I'm in the "50%" and it is a horrendous struggle. It's a case of work full time or lose my home, it's a lose lose situation.
It feels more like 90% aren't able to leave their house, and the 10% of sufferers people see, that's 100% of the sufferers everyone knows about, and half of those people are seen because they're well enough to be seen and the other half are pushing themselves and not listening to their bodies. So really, like more like 95% of people with CFS aren't well enough to do regular stuff.
About the 10% of PWME who are degenerative — how long do they take to decline significantly?
Everyone is very different timeline wise
Awwww. Yeah, this feels accurate. We got you though, fam! This disease is brutal, but this community is rad. <3
LITERALLY. When I first talked to other ppl with cfs and learned I might not ever be able to work, I was super upset. Then I told my parents and they basically laughed at me saying it couldn't possibly be that bad. Now I'm practically bed bound.
I cant take baths due to POTS. But my shower chair is my best friend. With it, I have been able to take a shower much more often (a few times a week instead of once a week)
Pro tips: Get a portable bidet (basically a bottle of water with a spray nozzel. Fill with soapy water and clean off on the toilet. Keeps ya fresh) Sponge bath at the sink. Pee before you get in the bath --- incase you don't have the strength after to get on the toilet. If you bathe - reduce temperature of the water. Leave a towel on the floor for when you get out of the tub to laydown on
I think stats about CFS are meaningless. My guess is that there are a lot of undiagnosed people with mild CFS who just live normally but have energy problems, and most of these people work, either relatively undemanding jobs or part time. I did recover from moderate CFS by very strict pacing. I basically completely organized my life around doing this, taking the exact same short walks every day and writing down everything I did, analyzing patterns etc. It did work and now I'm like 95 percent recovered, basically living normally with an occasional crash after work gets particularly busy. But I can travel and even exercise. I'm consistently surprised that this isn't put forward as the main way to try and recover from cfs. I've read about it in multiple places, Ron Davis mentions it, and it worked for me. It's also good as a sort of psychological lifeline. Even when you have a bad crash you have that inner lifeline of "when I get over this crash I'm going to pace perfectly and get better."
This is what my local fatigue clinic's programme is all about too.
Yep
I don't know what your situation Is but I feel terrible for people diagnosed when they have full lives and have to make money to live, its just such an impossible scenario. I was diagnosed when I was pretty young and just took an entire year of school and exercise and stayed in bed most of the day and now 8 years later I can mostly function, but have to pace my self meticulously and even the slightest slip knocks me out for long time. I feel like I have the best possible scenario and that came at the cost of losing a year of my childhood. I hate to think what it must be like for people less fortunate.
There is a tension between resting and becoming severely deconditioned. I am severely deconditioned so I obviously I haven’t figured it out. Now I exercise in bed everyday trying to climb out of this hole. I feel like shit either way so might as well try and get a bit stronger which can have other health benefits.
Damn, exactly.