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Junior Member
Member Since Apr 2024
Location: Manitoba Canada
Posts: 16
8 hugs
given |
#1
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. |
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nonightowl
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Jimi the rat
Member Since Dec 2008
Location: Northern Europe
Posts: 6,279
15 |
#2
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. __________________ |
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ForestGhost, nonightowl
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Junior Member
Member Since Apr 2024
Location: Manitoba Canada
Posts: 16
8 hugs
given |
#3
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 I've been a little withdrawn lately.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.
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Jimi the rat
Member Since Dec 2008
Location: Northern Europe
Posts: 6,279
15 |
#4
Quote:
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. __________________ |
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nonightowl
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