alias_sqbr

Friend: Is video night on tonight?

Brain: CANCEL
Me: Really? I don't feel that sick, right?
Body: Yeah you're ok!
Brain: CANCEL ANYWAY
Me: ...is this just anxiety? I'll have a shower and see how I feel.
Body: Oh you do NOT have the energy for that.
Me: You said I was ok!
Body: Visitors are coming over! I have to put on a brave face!
Me: *cancels* Well they're not coming now :/
Body: THANK GOD. YOU ARE IN SO MUCH PAIN.
Me: What? But- *becomes my icon*

I did make it in the end, but only for the Saturday. Which was lots of fun and SO MUCH LESS EXHAUSTING than going for the whole con, so I think I'll make it my default from now on.

There's no panel notes or anything, just me rambling about my day.
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I am having to stop myself evangelising PEA to everyone I know with chronic pain, because I know how annoying that can be. But I am glad a friend told me about it, and it may be helpful for someone out there. So I'm going to put the info under a cut and you can read or not!
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First, a plug: Fanart Remix Exchange now has a dreamwidth mirror at fanartremix and fandom nominations are currently open!

barbeauxbot has been talking about her recent ADHD diagnosis and it's got me wondering if my own absent mindedness and concentration issues (which the cfs has made harder to cope with, but they predate it) is due to something similar. And research has shown that adhd meds are apparently sometimes good for cfs/me even if you don't have adhd...but are bad for anxiety even if you do. Urgh. So I will discuss it with my psychiatrist and see what he says.

Read The Suffragette Scandal by Courtney Milan today and it was super fun. A bit...fanficcy, almost, including both the good (lesbian (very) background pairing!) and the bad (a bit too much emphasis on fun moments over a coherent whole) but the female protagonist is a dauntless suffragette journalist and the hero, despite claiming to be an untrustworthy scoundrel, spends the whole book being supportive and thinking she's THE BEST. Since she's basically perfect the only real angst and character growth involves his manpain, but at least he's not too much of a jerk about it.

Currently watching Free, Sailor Moon Crystal, Love Live, and Fresh Pretty Cure, the only one I'm not SUPER enjoying is Sailor Moon but it's still fun. Am paused on Arrow, I seem to be in more of an anime place right now.

One of the most important things for chronic fatigue syndrome is pacing: figuring out how much energy you can consistently use each day and sticking to it rather than overdoing it one day and crashing the next. The importance of pacing has been proven through both scientific study and interviews with people who have the illness and is about the only thing that helps everyone (and not pacing is one of the most reliable ways to make your condition worsen). But it's hard to balance the need to rest with the need to go out and have fun, do necessary chores, keep muscles exercised etc, especially at the start. Plus not every task suits being broken up into little chunks you can do a day at a time.

For the first few years, any time I had the slightest doubt about whether I was up to something I cancelled it, because my instincts were still wired for healthy!me. Whenever I ignored this mantra I made myself very ill and took ages to recover.

And then my instincts finally shifted to match my actual capabilities, which was good, but meant that I was cancelling things more than I needed to. Also my instincts for how much energy it takes to go out places are still based on when I had to walk rather than the much lower energy required to go out with my wheelchair.

Which has all added up to me erring on the side of not cancelling things when I'm not 100% sure I'm up to them, as long as the consequences for misjudging aren't too severe. It's a bit scary, but has been working pretty well so far! (I still cancel things I know I'm not up to, which is sadly quite a large proportion of things)

This post brought to you by me deciding whether or not to go to the Swancon programming meeting today since I'm still recovering from going out yesterday. Though there's still time for me to take a sudden turn towards the sleepy.

EDIT: lol nope, I'm not going anywhere today. The basic principle still holds though.

Since someone asked and I realised it probably isn't entirely clear! I know I took a long time to come around to the idea myself.

So: I can walk ok for short distances, but my energy levels vary dramatically, and even on good days I can't go very far without my legs feeling strained and then having my cfs symptoms flare up in response for days or weeks afterwards. If you see me looking energetic at a social event etc, know that I'll pay for it later. The wheelchair means I can travel long distances without hurting or fatiguing my legs, and will hopefully make me much less housebound.
( A case study in contrasts )

Today I went shopping! By myself! And bought a bunch of stuff! I honestly can't remember the last time that happened.
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Having the kind of day where I have to work myself up to making a hot water bottle, and decided I might as do a general update on the state of me for people who have trouble sifting through all the fanart etc. (Those who are only here for the fanart etc are welcome to scroll by :))
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So, as it happens, I started using both Second Life (for the cfs study) and the beta of Google Wave today.

They're both..odd. My brain is reeling a little from learning and experimenting so much all at once. I think both would be improved if I knew some other people, so if you have an account on either let me know.

Google wave seems like a more fluid, multi-user version of Google docs. You create a document, and invite people to use it, and then people can edit it in real time and insert all sorts of stuff like maps, polls, videos etc. Any addition is in a little box with the name of the person who made it, and you can reply to these to create a sort of chat-like environment. You can do private replies too, which I can see getting complicated. Username: alias.sqbr

One of the nice things about doing the study is I got talked through the Second Life setup process. But once left on my own and done with tutorials and fiddling with my outfit I ran out of stuff to do a bit. I wandered around, but while some of the places I've found are pretty cool there's noone there. I guess it's the time difference? Username sqbr Daxter (which is a really dumb name, but I'm stuck with it now :))

EDIT: I searched for "Chat" and chatted to some random people from England for a bit. Man, I haven't chatted to genuinely random strangers in ages.

I encounter a lot of people who have fatigue chronically but aren't sure if they have Chronic Fatigue Syndrome asking me for advice. Here's some advice based on my personal experience, and thus possibly entirely wrong for people who don't have cfs.

First off: You have my sympathies. Fatigue sucks. But things will hopefully be ok.

Second: Take it seriously. See a doctor and get tested for things like thyroid function, iron levels etc. There are some really serious, even deadly illnesses which can cause fatigue.

And CFS isn't serious in the sense that it will kill you(*) but if you ignore it and push yourself you can get very sick. As in bedridden, on a ventilator sick. Or at least as sick as me, which is sucky enough.

Third: If you're trying to figure out if what you have is Chronic Fatigue Syndrome, afaict the two deciding factors are (a) Post exertional malaise: feeling much worse after even relatively mild exercise (b)Not having any other obvious cause. Links tend to break but here's some more details. My personal experience is that on a good day, when I barely moved and got lots of naps, I feel like it's like 4am after a long day of carrying rocks with no sleep.

Most doctors are awful at dealing with cfs. Don't ignore them entirely, but research things yourself and learn when to trust your own judgement.

I have a list of recommended doctors from the Chronic Fatigue Association of WA but in the end didn't find it that useful, there's too many woo quacks pushing miracle cures. Some of the alternative stuff has been mildly helpful for me but most hasn't. I've had better luck with competent regular GPs. Some people have had success with alternative treatments, but be very cautious about anything which either costs a lot of money or starts to make you feel worse, no matter how convincing the doctor or other patients are. This includes the more conventional "cures" graded (gently increasing) exercise and psychological therapy, both of which work for some people but have been proven scientifically not to work on average. If there was a guaranteed cure we'd know, and exercise usually does more harm than good.

"New Potential Cures" come up in the news every now and then, I like to think one of them will work out eventually but don't get attached to the idea, you'll just feel sad when it doesn't happen quickly.

If, like me, you have Post Exertional Malaise, it is vitally important to avoid unnecessary exercise, especially anything that makes you feel puffed or strained, even if you get a temporary endorphin high it will make you sicker long term.

Apart from generic chronic illness advice (don't push yourself, eat healthy, avoid stress and stuff that makes you sick like known allergens etc) treatments which help one sort of chronic fatigue doesn't always help another and may make it worse. This is even true for people with diagnosed chronic fatigue syndrome. The most important thing I've found is learning to be in touch with how my body responds to stuff and changing my behaviour accordingly. You can see some of the specific things I've done on my cfs tag, and cfs support groups can be useful. I used to like cfids_me back in the day.

The only med that has really helped me with cfs specific symptoms is PEA/Palmitoylethanolamide for the pain, plus paracetamol.

It's good to try and figure out what if any behaviours etc trigger flare ups, but whatever you do you'll have ups and downs for no apparent reason, varying from day to day, month to month and year to year. I find I'm happiest if I just roll with it as best I can.

Pacing is vitally important, avoid the cycle of doing too much on the days you have energy and crashing afterwards. It makes sense to do a bit more on good days, but spread things out enough to avoid crashes, even if it means forcing yourself to rest sometimes when you feel antsy and forcing yourself to push a bit when you feel tired. Avoid relying on caffeine.

One of the hardest parts is learning to say no: to doctors pushing for exercise you know will make you sick, to friends who don't understand why you need to leave social situations early or not go at all, to employers and family who think you're just lazy. It's tempting to push through to satisfy these people, but this will just make you permanently sicker and even less able to meet their impossible standards. So just say no now. Yes, it's hard, but it will only get harder if you put it off. Believe in yourself even if noone else does.

Some good news: the more you look after yourself the more likely your symptoms are to stabilise. And for me at least, though my symptoms have never improved the experience of being sick has gotten much less awful over time, when I first had to stop working I became horribly depressed about my life, but at this point I am happier than I was when I was well. Being sick didn't make me happy, that was other things, but it hasn't stopped me having a happy life.

But again: Take it seriously. Don't ignore it and tell yourself you're being lazy. Give yourself permission to take breaks and do stuff that makes you happy rather than feeling guilty about all the stuff you're not doing. You need to set your goals and expectations so that they are as achievable and rewarding for you as a healthy person's are for them. Whether it's psychological or physiological, or both, if it's making you miserable and screwing up your life then beating yourself up about it and ignoring it is not going to help. Figure out what's wrong, and if it can be fixed fix it, otherwise learn to change your life to work around it.

(*)People have died but it's incredibly rare