May. 29th, 2019 10:54 pm
Tough Times
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murielle I've been quiet. I get that way when I'm crashing. Trying to keep a handle on my life and some things are working for me and some things not so much. But, that's life.
The hardest part of this disease is the cost. It costs so much! For me, the hardest cost is the loss of friendships. Some people can't understand why I get "quiet", don't answer emails or voicemails, etc., for long stretches of time and so they draw a line and I understand. I do. They reach out, I don't reach back and it's hard not to take that personally. So, they drift off, or they get really cold and I get the message. It's hard. I miss them. I wish I could fix things, but I can't. I can't even promise it wouldn't happen again because I know it will. And there's very little I can do about it. It's hard.
I've been sharing more political ME/CFS posts on FB, though I haven't really been going on FB. Can't be bothered. Don't really have the energy for "chat" and friends want to chat.
The videos I share are pretty extreme. Worst case scenarios of people who are in such extreme conditions they can't bear light, sound, any sensory thing at all. Their isolation is profound. Deathly. My own isolation is frustrating. I know I have it good.
Sure, I struggle. Doing anything right now takes lots of resting and building up for fifteen minutes of dishes, or prepping a meal, light housework between hours of rest, even sleep. Anything more than this is too much and I pay for it for days. I knit. I watch Youtube. Can't read right now. Don't have the focus. Even writing, which has always been there for me, is difficult.
But, there is joy! Every time I finish a wash cloth--that's what I knit these days I feel good. Every time I leave my kitchen clean and relatively tidy, I feel good. Anything I'm able to do feels good. Talking for half-an-hour at a time with friends and loved ones is pure joy, but anything over that is too much. So, thirty minutes and that's all she wrote.
I'm not complaining, as I said, there are those who have it so much worse than I do and I really appreciate everything I'm able to do.
Spent a while listening to Annie Lennox videos on Youtube just now--love her! What range! Wish I could share my current favorite video with you, Judy Jacobs rendition of Days of Elijah. Awesome! (Let's see, I feel adventurous. I'll give it a try.)
It worked! Yes! Enjoy!
The hardest part of this disease is the cost. It costs so much! For me, the hardest cost is the loss of friendships. Some people can't understand why I get "quiet", don't answer emails or voicemails, etc., for long stretches of time and so they draw a line and I understand. I do. They reach out, I don't reach back and it's hard not to take that personally. So, they drift off, or they get really cold and I get the message. It's hard. I miss them. I wish I could fix things, but I can't. I can't even promise it wouldn't happen again because I know it will. And there's very little I can do about it. It's hard.
I've been sharing more political ME/CFS posts on FB, though I haven't really been going on FB. Can't be bothered. Don't really have the energy for "chat" and friends want to chat.
The videos I share are pretty extreme. Worst case scenarios of people who are in such extreme conditions they can't bear light, sound, any sensory thing at all. Their isolation is profound. Deathly. My own isolation is frustrating. I know I have it good.
Sure, I struggle. Doing anything right now takes lots of resting and building up for fifteen minutes of dishes, or prepping a meal, light housework between hours of rest, even sleep. Anything more than this is too much and I pay for it for days. I knit. I watch Youtube. Can't read right now. Don't have the focus. Even writing, which has always been there for me, is difficult.
But, there is joy! Every time I finish a wash cloth--that's what I knit these days I feel good. Every time I leave my kitchen clean and relatively tidy, I feel good. Anything I'm able to do feels good. Talking for half-an-hour at a time with friends and loved ones is pure joy, but anything over that is too much. So, thirty minutes and that's all she wrote.
I'm not complaining, as I said, there are those who have it so much worse than I do and I really appreciate everything I'm able to do.
Spent a while listening to Annie Lennox videos on Youtube just now--love her! What range! Wish I could share my current favorite video with you, Judy Jacobs rendition of Days of Elijah. Awesome! (Let's see, I feel adventurous. I'll give it a try.)
It worked! Yes! Enjoy!