Any other members living with ME/CFS?

HI, new to the forum. I thought I'd ask if there are any other members here living with ME/CFS here.

What do you tell yourself when you have an off day? I've been having an off week actually. Really really fatigued and can't seem to do much other than connect on social media, take the dogs for our daily 1 km walk on the forest path behind our house.

That's actually getting hard too. I also have the delight of living with long COVID. I was infected in 2021 and it manifested into long COVID. My lung capacity has weakened so I've sloooowed down a lot.

It would be awesome to hear from others living with these chronic illnesses and learn about what you do to keep your hopes up.

I don't have ME. But I have several illnesses that strongly cause fatigue. I know it's not the same, especially in that I am not sensitive to light and sound. But I have absolutely no energy. I can walk farther now, I used only walk five minutes, can do 15 now. It means the world since my stores are 10 minutes away.

I mostly have bad days. I try to live for the good days. But I often can use the computer so I have that which is very lucky.

I can relate to bad lung capacity, one of my issues are compression fractures of the spine, I have three, and in general one cause 10 % of decreased lung function so i should work at 70 %, but it really feels less. That part is really hard.

I have many people telling me how active I should strive to be. Most of them tell me I should totally ignore what I feel. It's basically what made me this ill.

Hi jimi. Sorry I didn't reply sooner to your kind reply. I've been a little withdrawn lately. It's awesome that you rely on your computer - so do I. Sometimes it is my only window into the world.

It's totally fine. Sometimes there isn't much to say. I am also glad I am a pet person, I have a dog and a cat. I want to live alone, so they are good company, I'd go crazy if I didn't have them. Since neither me nor my friend could care for a dog by ourselves, we share the dog. It sounds weird, but it works out awesome.

When I talk to people with this, usually something always come up. It's that we wish other would understand. I think it is what is worst in all this. So many times people have tricked me to exhaust myself, just making me sicker. I don't understand why I can't just get through to them. I wish I would just stop listening, LoL.

Yes, I have ME/CFS and it's horrible. It's horrible that doctors don't even treat it. I've had 2 out of 3 of my (former) providers actually tell me to exercise, my former pain management doc & my former PT guy. He was great, but I have to politely tell them no, CFS doesn't work like that. WTAF is wrong w/people? My primary doc doesn't really do anything, acknowledgment is about as good as it gets. Some of my symptoms she's blaming on my thyroid meds are actually a consequence of my CFS & I've even found documentation to take to her for my next visit. Haven't seen her in a while b/c what's even the point? I hardly ever go to the doc at all due to them not doing anything. I have a functional medicine doctor that treats my Hashimoto's and my CFS, as much as he can but since he's in another state there's a lot of things he can't even prescribe. If it weren't for him, and all my own self-treatment efforts, I'd probably be bed-ridden. Thankfully I have a cat, so no walks. Getting to the supermarket is hella difficult. Getting to most places is due to fatigue & chronic arthritis pain for which I have very little that actually works.

I usually just try and endure on the bad days, watch a lot of TV, I mean a lot. I withdraw a lot too. I find social media and being online difficult most of the time, tend to do things in short bursts. I'll be very active for a few days or hours, then nothing for weeks - months, & beyond. The isolation is the worst. I am an outgoing extroverted type of person. I used to love to go out & party. My motto used to be play as hard as you work. But socializing has dwindled down. I just don't have the energy for most things anymore. I need a lot of very specific things to be comfortable and have any relief. Many of which I am unable to actually get.