The Cult of Ellen

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.

Five things make a post...

1. The guy who tried to attack ravenlas was found guilty, ordered to pay compensation and court costs. I can't help but hear Margie (Fargo) tutting and saying 'All for a little bit o' money!' - well, all for a little bit o' impatience. That garage visit has cost the guy a criminal record and £360 quid. *sigh* Not his finest Sunday afternoon, I'm betting...

2. The holiday was lovely; I got a lot of knitting done and not a lot of skiing, but enjoyed myself anyway. I managed not to be too frustrated at not having the oomph to get out skiing until the Thursday. It's a waste of good ski hire, but equally, I got out eventually. I highly recommend staying in a Le Ski chalet - we were looked after brilliantly by Ben, Elise and Poppy, even to the extent of baking gluten and dairy free shortbread and flapjacks so that I had something to have for afternoon tea. Awesome! I'm going to try baking some shortbread as that was so tasty.

3. The Xbox 360 Elite wot I got for my dearly beloved for our quarter anniversary should as of today be winging its way back to Play.com (intermittent graphics fault) and we should have the replacement by the end of the week. I hope.

4. I'm still tired, still lacking in stamina, so I'm cutting right down on 'doing things'. I'm attempting to stick to a 10pm bedtime (gah!) and take a 5 minute break in every hour to sit or lie down without distraction, etc, which is harder to manage than I'd have thought, especially since I don't particularly want to. I need to conserve more energy to my HPA-axis will fix itself, but I don't want to not do *anything* at all - I need to exercise! I don't want my weight to go up any further! I'm not entirely sure how to reconcile all this, but I'm working on it.

5. Hard Times isn't as difficult as people made out. The 1951 recording of Aida with Maria Callas, Del Monaco, Taddei, Dominguez, conducted by De Fabritis, is absolutely incredible. Recorded live in Mexico City. Wow! Watchmen is visually stunning, quite slow (thus allowing for appreciation of the stunning visuals), very well done and has animated giant blue wang. So what's not to like?

I meant to put up some links to fantastic things, I really did. Maybe I'll post a five links post later...

I am very tired - no full-blown CFS, just tired and my concentration's not great, so I'm a bit vague and rambly. Yes, more so than usual... And I have cramps. Bah. I don't think I'll be going out again this weekend except for maybe calling to the launderette to get my washing dried. So my apologies, Derek, for this evening, and gothgrr - I doubt I'll be going to boxercise tomorrow. Bah. Humbug.

Otoh, D&D 4th edition is actually fairly straightforward in combat. Which is kinda cool since I have problems with remembering what I'm supposed to be rolling and when in 3.5. And I'm (re)watching Galaxy Quest, which I intend to follow up with True Lies, then either Les Visiteurs or ravenlas's new dvd - Strippers V. Zombies.

Quote of the day: (in HMV) Adam: 'I never thought I'd say this, but which Zombie Stripper film?'

Normal communication should be resumed next week...