sqbr: I lay on the couch, suffering an out of spoons error (spoons)
Thursday, September 22nd, 2016 11:24 am
Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back

From all accounts the effects of the PACE trial were most horrific in the UK, but the idea that my fatigue is all in my head and is best treated with exercise has come up repeatedly for me, too. Ironically it's actually made me exercise less: I'm not willing to try exercising without the help of a medical professional I trust to say if I'm pushing too hard, and I've yet to meet any. They all set the baseline for "mild exercise" at a level I know would make me sicker, and have seen other people with cfs harmed by listening to this kind of advice.

I'm also really glad none of the psychologists or psychiatrists I've seen subscribed to the "tell patient to ignore their understanding of their own health" approach to CBT. Blech.

The "you don't have exercise intolerance you're just neurotic about exercise and need to believe in yourself" attitude is so appealing to able bodied people, and can seduce people wth cfs, too. For a while. Back when [livejournal.com profile] cfids_me was more active we'd always have people touting the Lightning Process.
sqbr: me cosplaying the bearded dwarf cheery longbottom, titled Expressing my femininity with an axe (femininity)
Sunday, January 30th, 2011 08:06 am
While drafting a (still unfinished) reply to Real Sex 101 I googled vaginismus to make sure I had the spelling and definition right and discovered that the Wikipedia page assumes anyone with a vagina is a woman. Below is a draft corrected version but I've never edited Wikipedia before and HATE proofreading so am a bit hesitant to post it. I haven't done any major edits beyond ungendering the language, what do people think? It's pretty clunky in places, though not all of that is my fault :)
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sqbr: me cosplaying the bearded dwarf cheery longbottom, titled Expressing my femininity with an axe (femininity)
Sunday, September 26th, 2010 04:53 pm
Female sexual dysfunction discussion bingo, all the things that come up reliably in any discussion of the subject.

I've been meaning to post a link to Feminist with Sexual Disfunction for ages, even if you don't have sexual disfunction they're just a really good general feminist/sexuality etc blog and have a unique POV.

One of the reasons I've been putting it off is that I feel that, as part of trying to reduce the stigma around sexual disfunction, I should mention that I have had issues with that sort of thing myself, though at this point it's only around the middle of the list my many irritating incurable poorly diagnosed health problems that make life less fun. Not something I feel like talking about at all but there you are.

I find it interesting if rather depressing how the "It's all big Pharma making healthy women think they're broken" attitude contrasts with the "Clearly if you don't feel like having sex you must have some medical condition" crap pushed on asexual people. In both cases the experiences and opinions of actual people count for nothing in the face of The Way Things Are Supposed To Work.

(Also, I hope it goes without saying but: Please do not say any of the things in those bingo squares here)
sqbr: A cartoon cat saying Ham! (ham!)
Saturday, February 27th, 2010 04:16 pm
(This has been sitting in my drafts folder for a like a year, I decided it's never getting any better and has merit so might as well post it)

I've always felt a bit cut off from the usual female obsession with thinness and dieting. This post isn't meant to criticise those who work against that obsession, it doesn't really have a point at all, I'm just poking at my different experience.
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sqbr: I lay on the couch, suffering an out of spoons error (spoons)
Saturday, October 24th, 2009 09:52 am
I've seen like a bazillion links to the recent discovery that CFS/ME may be linked to a retrovirus called XMRV. But [personal profile] livewareissue linked me a particularly good one: A Case of Chronic Denial

If nothing else it highlights the terrible way CFS/ME has been ignored/belittled by the medical establishment.

I'm really not sure how I feel about this discovery. I mean for a start it's early days and correlation is not causation etc (especially since cfs tends to be correlated with all sorts of virii) But if it is true that CFS is to XMRV as AIDS is to HIV well..on the one hand, possible avenue for cure/treatment, yay. On the other hand..being contagious and having a virus mostly known for causing cancer, less yay.

Overall my reaction is as to most suggestions/revelations about CFS, eg putting it aside to think about it for a while and not get too excited. Because I just don't have the energy.
sqbr: I lay on the couch, suffering an out of spoons error (spoons)
Sunday, August 30th, 2009 01:01 pm
I've been thinking about the issues that I and Cam have gone through since I got really sick, but How a Marriage Survives When One Partner Gets Sick covers them pretty well so read that instead. It's specifically about people over 40 but I found most of it applicable.

It's always..weird to discover that your particular unpleasant experience is identical to a whole bunch of other people's. I had the same thing when I encountered other Phd students talking about the particular brand of misery and self hatred postgraduate research inspires.

You know how Cam could be more supportive of me right now, though? Not taking a nap in the next room when I have a bunch of vids I want to watch. Hmmph! But we'll work through it somehow.
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sqbr: I lay on the couch, suffering an out of spoons error (spoons)
Monday, May 18th, 2009 08:12 am
These are all awfully late but I kept forgetting.

So, today [livejournal.com profile] foc_u wants:
anyone who identifies as a POC/non-white to post this banner, their speculative short stories, artwork, poetry or simply write a post on their favorite fandom on their blogs as an act of protest to show we will not be silent or invisible.

(nb there have been issues raised about the mod and whether or not that stops you is up to you)

It's International Day Against Homophobia and Transphobia

Oh and I forgot International ME/CFS awareness day entirely. I was too sleepy :/

And some less time time dependent stuff:
[livejournal.com profile] sea_sff: Southeast Asian sff fans!

wild unicorn herd check in If you identify as a POC/nonwhite person and you read or watch scifi or fantasy, give yourself a name check in this thread.

Since that fact that non-white/POC fans exist seems impossible for some people to fathom. (This is a follow on from some amazingly stupid comments by Lois McMaster Bujold but it's a problem which goes beyond her)
sqbr: pretty purple pi (Default)
Wednesday, May 13th, 2009 07:33 pm
I really like [personal profile] synecdochic's "comfort the disturbed, disturb the comfortable" is not just a bumper sticker for me. The only passage which threw me and I still have trouble coming to terms with is

7.1. When I do speak in the online sphere, I should take responsibility for controlling any resulting conversation that occurs in any space I have control of, to ensure that the conversation does not cause others pain. If I don't have the time or the spoons to exercise that moderation, I should not allow conversation. I should not allow a conversation I begin to be used to hurt others.
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sqbr: "Creative genius" with an arrow pointing to a sketch of me (genius!)
Saturday, April 18th, 2009 09:27 am
Yesterday, watching Xena I was inspired to draw this picture of two princesses. Yeah, totally self indulgent, live with it :)

I was also inspired to make this attempt to capture the weird visual distortions I was getting at a work party yesterday morning, normally it would lead to a migraine but for some reason it didn't. (Huzzah!) Picture by QuintanaRoo via Flickr, and as per her CC rules it is open to remixing/reuse with attribution itself.

I should point out that the work function spread was not anywhere near so healthy or vegan :)
sqbr: I lay on the couch, suffering an out of spoons error (spoons)
Sunday, March 1st, 2009 08:27 pm
An artist posting to cfids_me (with a quite effective painting of fatigue) led me to Pain Exhibit, artists with chronic pain expressing their experiences. Chronic pain isn't my main symptom but it's definitely there, and since I know a lot of you have chronic health issues I thought you might also appreciate it.

I'm not suprised there isn't a "FatigueExhibit.com", being too sleepy to do anything kind of makes you, well, too sleepy to do anything, including painting your feelings.
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sqbr: And yet all I can think is this will make for a great livejournal entry. (livejournal)
Wednesday, February 25th, 2009 04:45 am
I decided I was spamming twitter too much, so will put my rambles in one place, all the easier to scroll past :)

This is my second cold since my cfs got Super Bad. The first one was during femmconne, and quickly became Very Nasty and left me with bronchitis and a hacking cough that didn't so much go away as exponentially decay. This one SEEMED pretty minor but has kicked back in this morning with congestion and is making my "You will be sick for a while" warning go off (one advantage of being constantly sick for my whole life is well worn instincts about these things) On the plus side? Femmconne was last October. I used to get colds about once a month. You'd expect my immune system to be more susceptible to virii when I'm chronically ill but apparently not. *wonders if this has anything to do with cutting out dairy, since that gives me cold like symptoms*

I've been reading Pride and Prejudice fanfic. I realise that if I want genuinely feminist plots I should avoid stuff set in sexist times but it still annoys me that modern writers of regency romance are almost all more rigidly heteronormative etc than Jane Austen/Charlotte Bronte etc. (Admittedly they still do better than the average writer of that era, I say having been introduced to the plot of Pamela) People, Elizabeth Bennet was not a saucy minx. I am SO sick of the "Heroine misunderstands hero, is feisty but wrongheaded, he forgives her and she realises she should have just trusted him and done what he said all along" storyline. I prefer "Jane Eyre"s plot of "Heroine misunderstands hero and is feisty but wrongheaded, then finds out what is really going on and is justifiably pissed, and goes off to make her fortune before coming back the more powerful partner." I'd steal it for my own fanfic but do not have the heart to burn down Rosings :) *steals bits of it regardless*
sqbr: I lay on the couch, suffering an out of spoons error (spoons)
Friday, February 6th, 2009 01:32 pm
Not quite right but it will do until I feel like fiddling with it some more. Inspired by Kira attempting to create the situation depicted :)
sqbr: pretty purple pi (default icon)
Monday, February 2nd, 2009 05:44 pm
So since I realise I didn't say so explicitly: I'm back at work Tuesdays and Thursdays for 4 hours a day.

On the one hand this is great, on the other it's taking me a while to adjust (I am optimistically seeing it that way, if I keep feeling this crap, well..) and so far tend to feel like Utter Crap between Tuesday afternoon and mid-Friday. The weather Is Not Helping.

I've been Disclaimer 4bing all over the internet recently, it's quite embarrassing. *tries to keep a tighter reign on my need to talk to Everyone about Everything*

And now to make dinner!

I need a cfs icon. I have huge icon-envy of [livejournal.com profile] lauredhel's slug.
sqbr: And yet all I can think is this will make for a great livejournal entry. (livejournal)
Friday, January 30th, 2009 07:43 pm
First the annoying: I ran out of medication unexpectedly so had to tire myself going to the dr, pay $60 consultation fee, and $30 extra for the wrong size packet (thanks again to The Worlds Most Incompetent Doctor)...only to get home and find the other packet hiding in the other side of the bathroom cabinet. bah.

And now the happy:

  • Dawntreader is back yay!!
  • I KISSED A GIRL: This has to be the slashiest het vid ever :) Smallville, Clark/Lex and Clark/Every Girl Ever (Was that Poison Ivy?) Is it clever editing, or has the show really turned into "Lets come up with excuses to get Clark topless"? I think it gets a repetitive by the end but it amused me.
  • Apparently I am well known at my local library as "The woman who reserves the interesting books", one of the librarians said she's gone on to borrow some of them herself. This makes me happy :)
  • small tin peaches+ cup water + cup sugar makes for easy and tasty sorbet. Though I think I'll go for less water and sugar next time.


It's funny, that song annoys the hell out of me when sung from a female POV, but amuses me no end from a male POV. I wonder if the vidder had seen the Paul McDermott version?
sqbr: me cosplaying the bearded dwarf cheery longbottom, titled Expressing my femininity with an axe (femininity)
Friday, January 30th, 2009 08:02 am
About a year ago I decided to investigate alternative menstrual products, partly out of eco-sensiblity but mainly because they sounded really useful.
Cut for those afraid of blood )
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sqbr: A stick figure doing cartwheels saying "Yay" (yay!)
Tuesday, January 20th, 2009 10:15 am
So far I spent half an hour chatting to the new girl while I waited for my forgotten password to reset, and since I can't do anything until someone else gets back from a task in the city am currently lesuirely emptying my 300+ full inbox(*). (Oh and I spent about 10 minutes figuring out how to operate the sandwich toaster without having the circuit break)

Have not been overcome with overwork thus far :D

(*)It doesn't help that in the downward slide that eventually led to me having to leave I became increasingly unable to deal with my email. After making sure none of the new ones were urgent I started from the bottom and I'm currently at 1/08/08...
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sqbr: pretty purple pi (default icon)
Saturday, December 6th, 2008 04:29 pm
I'd be tempted to wake him up, but then don't think he'd be any mood to fix the email server :)

Blarg. I feel sick, and not in a cfs way(*), I think something I ate at lunch disagreed with me.

(*)Although as always that's piping up too as a result of me feeling run-down
sqbr: me in a graduation outfit. Trust me, I'm a doctor (of maths) (doctor!)
Thursday, December 4th, 2008 08:06 am
I went to my first acupuncture appointment yesterday. It was ok, impossible to tell if it's had any long term effect given how variable my condition is but I certainly didn't feel much difference straight after.

I normally wouldn't touch alternative medicine with a ten-foot pole but [livejournal.com profile] black_samvara said it worked for her chronic fatigue, and my current approach is to try anything that has been specifically recommended by people who've gotten over chronic fatigue (or a specialist I was similarly recced) This approach has the benefit of giving me an excuse to choose not to take the well meaning advice of people who want me to try random stuff that helped them with stuff that was not chronic fatigue syndrome (no offense to people who mention stuff that helped them, since sometimes if it sounds plausible I will try it, it's the "You should do *blah*!" that's annoying)
meandering description )
sqbr: me in a graduation outfit. Trust me, I'm a doctor (of maths) (doctor!)
Monday, December 1st, 2008 08:35 pm
Before I forget:

I went to the doctor again, my test results came back low-but-just-within-normal for Vitamin D and something similar (low or high?) for ANA.

It turns out that colloidal minerals did not mean silver, but actual useful minerals like potassium etc, in the form of concentrated sea water. This stuff tastes really odd (a bit like salted licorice) but I've found it makes a nice addition to savoury sauces. I should check with him if that's an ok alternative to drinking it :D (vitamins etc I wouldn't do that too, but these are metals, they're hardly going to degrade)

He seemed pleasantly suprised that I was having an improvement so fast.

He said fermented soy (ie soy sauce) is probably ok (THANK GOD) but mainly went on a little rant about GM soy which I nodded and smiled through (it's not like I'm going to eat it either way...). He said there's no way to tell if trace amounts of gluten etc will affect me very severely except by comparing my health with them and without them, which is kind of annoying but what can you do. I think I'll wait to get really picky about that sort of thing until after christmas or there'll be no end of angst with my mum's cooking.
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sqbr: me in a graduation outfit. Trust me, I'm a doctor (of maths) (doctor!)
Sunday, November 16th, 2008 10:55 am
Since I've been making all these changes to my diet etc, I thought I should record how I feel.

For reference, here is the baseline. Now I have good days and bad days, and psychology plays a lot into that (unfortunately, it's not so much that positive thinking makes me feel better so much that being motivated by something makes my body repress how crap I feel until it is done. I crashed a fair bit after Wastelands, for example) so it's hard to say for certain what long term effect this is having until it's ben a few weeks.

But so far, I actually feel pretty good. For me.
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