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The Penguins won their first-round series against the Flyers in 6 games, woohoo! The second round started last night; they won the first game against the Washington Capitals, hurrah! Fingers crossed for the rest of the series.
My ME is still pretty bad right now; I didn't get to the church craft night last week or this week, couldn't go in to the charity shop on Monday and Tuesday, couldn't get to my IT course or mindfulness course at the Cedar Foundation on Wednesday and Thursday, and haven't made it to the knit & natter group at the library this afternoon. Instead, I've had a couple of days where I spent most of the day in bed, have spent the rest of the time on the sofa (where I am now), been knitting very slowly, and have done very little else. I haven't been up to talking on the phone - I tend to drift in the middle of a sentence, or can't follow someone else to the end of their sentence; I forget what they've said or what I'm saying.
I went out to the shops this morning, largely because we were almost out of everything (and almost out of space on my credit card/on the overdraft with which to buy food, but never mind, eh). I shuffled around Lidl, then shuffled around Asda.
The lady on the till in Asda asked how I was doing, to which I said I was tired. She asked if I was off this weekend; I said I don't work, I have ME. She said she has a friend who has ME. "She's always complaining." And when I'd packed up the few items I'd bought, and was on my way, she said, "Get some sleep!"
She was trying to be nice to me when clearly I was being an awkward customer by not fulfilling the unwritten social contract of meaningless conversation. But just as clearly, she has absolutely no idea of what it means to have ME. Yes, I'm tired. Yes, I'd love to go take a nap and wake up feeling energised. But the only result napping will have is that I wake up still tired, still aching like I've been beaten with sticks, still brain-foggy, and the disruption to my sleep schedule will mean I won't be able to sleep tonight, because sleep disturbances are a problem.
Today I didn't have the energy to use this as a teaching moment. I didn't have the energy to smile and say I'm fine and talk about the weather. Because I have ME and it's kicking my arse right now. I'm not trying to be another ME sufferer who complains all the time - but I'm tired with bone-deep exhaustion and I'm in pain and I don't have it in me to smile and tell white lies and if that lady thinks that's complaining, so be it.
There's a gentleman, a regular in the charity shop, who thinks my ME is depression and all in my head. He's a lovely guy, but it's incredibly dispiriting to think that belief, that attitude persists in spite of all the evidence around the physical nature of ME/CFS. Just because the illness isn't fully understood (or anything close to it) doesn't mean it's a psychological or psychosomatic disorder, any more than any of the other poorly understood physical illnesses people suffer from. Here, have a factsheet; take one and pass them along.
I downloaded the 'Read Aloud: A Text to Speech Voice Reader' Chrome extension so I can listen to stuff (by which I mean fanfic) as I knit very slowly (my eyeballs ache at the mo). It doesn't cope well with being fast-forwarded. Anyone have any recommendations for a different one? I have to say, the voice - while clearly still a computer reading - is much, much better than the last time I tried anything like this.
My ME is still pretty bad right now; I didn't get to the church craft night last week or this week, couldn't go in to the charity shop on Monday and Tuesday, couldn't get to my IT course or mindfulness course at the Cedar Foundation on Wednesday and Thursday, and haven't made it to the knit & natter group at the library this afternoon. Instead, I've had a couple of days where I spent most of the day in bed, have spent the rest of the time on the sofa (where I am now), been knitting very slowly, and have done very little else. I haven't been up to talking on the phone - I tend to drift in the middle of a sentence, or can't follow someone else to the end of their sentence; I forget what they've said or what I'm saying.
I went out to the shops this morning, largely because we were almost out of everything (and almost out of space on my credit card/on the overdraft with which to buy food, but never mind, eh). I shuffled around Lidl, then shuffled around Asda.
The lady on the till in Asda asked how I was doing, to which I said I was tired. She asked if I was off this weekend; I said I don't work, I have ME. She said she has a friend who has ME. "She's always complaining." And when I'd packed up the few items I'd bought, and was on my way, she said, "Get some sleep!"
She was trying to be nice to me when clearly I was being an awkward customer by not fulfilling the unwritten social contract of meaningless conversation. But just as clearly, she has absolutely no idea of what it means to have ME. Yes, I'm tired. Yes, I'd love to go take a nap and wake up feeling energised. But the only result napping will have is that I wake up still tired, still aching like I've been beaten with sticks, still brain-foggy, and the disruption to my sleep schedule will mean I won't be able to sleep tonight, because sleep disturbances are a problem.
Today I didn't have the energy to use this as a teaching moment. I didn't have the energy to smile and say I'm fine and talk about the weather. Because I have ME and it's kicking my arse right now. I'm not trying to be another ME sufferer who complains all the time - but I'm tired with bone-deep exhaustion and I'm in pain and I don't have it in me to smile and tell white lies and if that lady thinks that's complaining, so be it.
There's a gentleman, a regular in the charity shop, who thinks my ME is depression and all in my head. He's a lovely guy, but it's incredibly dispiriting to think that belief, that attitude persists in spite of all the evidence around the physical nature of ME/CFS. Just because the illness isn't fully understood (or anything close to it) doesn't mean it's a psychological or psychosomatic disorder, any more than any of the other poorly understood physical illnesses people suffer from. Here, have a factsheet; take one and pass them along.
I downloaded the 'Read Aloud: A Text to Speech Voice Reader' Chrome extension so I can listen to stuff (by which I mean fanfic) as I knit very slowly (my eyeballs ache at the mo). It doesn't cope well with being fast-forwarded. Anyone have any recommendations for a different one? I have to say, the voice - while clearly still a computer reading - is much, much better than the last time I tried anything like this.
