Man this was so hard to do during the holidays. I knew I was going to have PEM but it was the first time since 2018 that I hadn't been mostly bedbound, so I felt I had to "YOLO" it. I mean I don't regret it, but it took a toll on my progress. There were definitely some things I wanted to and SHOULD'VE said no to. 👍🏻❤️
Thank you for this important message. After 10 years with ME, I still feel absolutely horrible when I have to say no to anyone. The guilt is overwhelming, and even if do I manage to stay no, I feel bad for days. Your post helps a lot to reconfirm that it’s not me being lazy, it’s a necessity. Intellectually, I already know this, emotionally I don’t.
and if they don't get it you don't have any friends. Not criticizing because you are absolutely bang on about this. how sick i get from being pushed for one hour - isn't worth it . Not only my body, but worst of all my brain, having to lay on my back not moving for two damn weeks. my friend, yup, i have one was asking me about this - he's the only one that hangs with me and we help each other as we can, support is the most important really. he just got hit with an illness during the pandemic, and the trouble and lack of support really hurts.
Guilty. I did it yesterday in the excitement of having someone come help me garden. She's young and healthy. My brain started thinking I was young and healthy. My body was saying, "You're a maniac. Listen to your body." Fortunately, my friend told me to chill, and I did, but I still gave my brain a little rein so today body is screaming and moaning. It's like having a weak 73 year old body but the brain of a five-year old on a high sugar power trip.
Truth. QUESTION, even though I know I have ME/CFS pluses other illnesses and Complex PTSD I STILL battle with thinking I am Lazy and I should and Could get out of bed and get more productive. I am very I'll but beat myself up still. I do get out and get groceries and things like that but I find it overwhelming. Does anyone deal with this very painful way of dealing with Chronic Illness?? Thanks
Of course! You’re not alone! I’m moderate-severely ill with CFS (summer-moderate, winter-severe). I see others on RUclips with chronic illness and sometimes think that I am being over dramatic on thinking that my CFS is severe. However, 95% of the time I’m in bed or on the couch. I do get out a few times a month, but a family member pushes me in a wheelchair. My brain fog is too severe to do much of anything, reading books, going to college, even basic instructions are difficult to understand.I also get crazy overwhelmed with just about anything, and think I’ve developed a sort of PTSD/trauma because of it. My body is in survival mode 24/7.You aren’t lazy. Those who are mildly ill aren’t lazy either. Every severity stage has its own struggles. And NO ONE experiences the same pain and circumstances. We all struggle with different things. So just because you see healthy or other ill people be able to do more, or less than you it doesn’t make your pain any less important. Pain and struggle is just that, pain and struggle no matter the severity. Hope you’re doing okay!🥰xx
Oh yes!!! My Ex took my children away and told them how horrible mum is, same goes for my parents.2 years down the line, I am slightly better, but now having to fight in court to get access to them to make the children understand that it is the Illness not the Mum that got crazy. I have to push and I can’t. Otherwise I will loose them forever.
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Agree , it takes courage to say No sometimes
It really does. Especially if you are the type of person who is really unselfish.
Just so hard to do....I'm guilty of being a Yes person...Thanks for you tip
Man this was so hard to do during the holidays. I knew I was going to have PEM but it was the first time since 2018 that I hadn't been mostly bedbound, so I felt I had to "YOLO" it. I mean I don't regret it, but it took a toll on my progress. There were definitely some things I wanted to and SHOULD'VE said no to. 👍🏻❤️
So hard to do on the holidays. I always crash.
Thank you for this important message. After 10 years with ME, I still feel absolutely horrible when I have to say no to anyone. The guilt is overwhelming, and even if do I manage to stay no, I feel bad for days. Your post helps a lot to reconfirm that it’s not me being lazy, it’s a necessity. Intellectually, I already know this, emotionally I don’t.
Yes, very good advice. Maybe it's my age but I don't do that at all now. Thank you and hope your keeping well. X
Really helpful reminder
This message came up just at the right time! Much needed as i declined something for that reason yesterday and feel bad about it! Thanks so much 😊
and if they don't get it you don't have any friends. Not criticizing because you are absolutely bang on about this. how sick i get from being pushed for one hour - isn't worth it . Not only my body, but worst of all my brain, having to lay on my back not moving for two damn weeks. my friend, yup, i have one was asking me about this - he's the only one that hangs with me and we help each other as we can, support is the most important really. he just got hit with an illness during the pandemic, and the trouble and lack of support really hurts.
🙌 very true
Guilty. I did it yesterday in the excitement of having someone come help me garden. She's young and healthy. My brain started thinking I was young and healthy. My body was saying, "You're a maniac. Listen to your body." Fortunately, my friend told me to chill, and I did, but I still gave my brain a little rein so today body is screaming and moaning. It's like having a weak 73 year old body but the brain of a five-year old on a high sugar power trip.
So good. ❤
So hard not to!
I think I’ll start selling shoes with the slogan;
JUST DONT DO IT!
Don’t false guilt yourself.
It’s the last thing we need on top of feeling yucky. Took me many years to accept.
🔥🔥
Truth. QUESTION, even though I know I have ME/CFS pluses other illnesses and Complex PTSD I STILL battle with thinking I am Lazy and I should and Could get out of bed and get more productive. I am very I'll but beat myself up still. I do get out and get groceries and things like that but I find it overwhelming. Does anyone deal with this very painful way of dealing with Chronic Illness??
Thanks
Of course! You’re not alone! I’m moderate-severely ill with CFS (summer-moderate, winter-severe).
I see others on RUclips with chronic illness and sometimes think that I am being over dramatic on thinking that my CFS is severe. However, 95% of the time I’m in bed or on the couch. I do get out a few times a month, but a family member pushes me in a wheelchair. My brain fog is too severe to do much of anything, reading books, going to college, even basic instructions are difficult to understand.I also get crazy overwhelmed with just about anything, and think I’ve developed a sort of PTSD/trauma because of it. My body is in survival mode 24/7.You aren’t lazy. Those who are mildly ill aren’t lazy either. Every severity stage has its own struggles. And NO ONE experiences the same pain and circumstances. We all struggle with different things. So just because you see healthy or other ill people be able to do more, or less than you it doesn’t make your pain any less important. Pain and struggle is just that, pain and struggle no matter the severity.
Hope you’re doing okay!🥰xx
@@ruby3200 thanks for such a great reply. I appreciate you sharing this.
Oh yes!!! My Ex took my children away and told them how horrible mum is, same goes for my parents.2 years down the line, I am slightly better, but now having to fight in court to get access to them to make the children understand that it is the Illness not the Mum that got crazy. I have to push and I can’t. Otherwise I will loose them forever.
Isnt it worth it in the long run to have friends and a world outside of bed?