I caved yesterday and did go for a sleep. Got a (disturbed) couple of hours which did help and I still managed to sleep reasonably well last night. Woke up at 5am but managed to snooze until 7 when I'd had enough and got up.
A couple of people sent me links to something called The Spoon Theory on a website called butyoudontlooksick.com. It's a VERY good way of trying to explain a chronic illness like ME/CFS. Please do read it HERE.
Typically today has turned out to be a 'no spoons' day. I've woken up feeling crap. The chances of me getting out or doing anything today are a big fat zero, damn and buggeration. Not that the weather is up to much anyway I suppose.
I'm not sure if it's just the ME/CFS or something else brewing. My ears are aching and even more so when I swallow, but my glands often swell thanks to the ME/CFS so I don't know if it's related or I'm coming down with yet another viral infection, the culprit Dr Sam and I think eventually caused my ME/CFS because I was getting so so many and never able to recover properly from one before another hit.
Let's hope by resting today I might be able to gather a couple of spoons for tomorrow!
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Yes, the spoon theory is a useful idea. The site's title, butyoudon'tlooksick, is one of my bugbears at present. Every time I go to any kind of an event, someone I haven't seen for a while will tell me I'm looking really well. I have to resist the urge to throttle them as I explain I've been resting up for a couple of days in order to attend whatever it is, and that I know I'm going to feel like a well wrung out floor cloth for a couple of days afterwards. I normally can see their eyes glaze over half way through this exposition. That's why it's so good to find other ME-people here online to talk to! - we all know what we mean.
ReplyDeleteI've stopped trying to make people understand ages ago. It's the equivalent of talking to a thick, brick wall. They just don't get it. Why should they? At least they could spare me the "but you don't look sick" cliche-I swear that next time I hear that, I will answer "yes, but you don't look stupid either".
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