What would meaningful health support look like?

[firecat]

jennet made an awesome post about how people with illnesses/disabilities need more useful health information and support. Go look.

http://jenett.dreamwidth.org/1254551.html

Comments

[e4q.livejournal.com]

i had a scoot over there and this is the comment i left;

hi. i am a friend of firecat over on livejournal, but, like her, i write here first then it gets posted there, where i do most of my dialoguing.

i have fibromyalgia, which, for me, is mostly migraine, back pain, fatigue, brain fog, anxiety and unexpected flare ups of 'minor' conditions that come in for a side swipe. i have not worked for over seven years, and am on benefits in the uk.

i did a pain management course in hospital which no longer exists, but there is a book that came out of it called 'manage your pain' (practical and positive ways of adapting to chronic pain) http://www.amazon.co.uk/Manage-Michael-Nicholas-Molloy-Beetson/dp/0285636790/ref=sr_1_1?ie=UTF8&s=books&qid=1265195450&sr=8-1

the specific thing i got from this course was detailed instruction on setting base lines and pacing both activity and rest.

this course patched me up, got me off pain killers, but there was something missing. something which meant that i actually just ended up losing my relationship, picking up more work, then crashing much harder. the thing that was missing is addressed in the course this book http://www.amazon.co.uk/Living-Well-Pain-Illness-Suffering/dp/0749928603/ref=pd_bxgy_b_img_b is based on. i have met vidyamala, indeed, been taught by her. she is in a wheel chair and uses a watch with programmable alarms to prompt her to stand up for five minutes every hour. i had always used cooker timer type alarms, but this is better because you can set it for two different periods of time, and it is on your wrist, so harder to ignore. the cds are really essential if you are not an experienced meditator, and even if you are, these are orientated specifically for people with chronic pain.

pacing is very counter intuitive, but it does 'work' in that it keeps you moving enough, resting enough. for me, living alone, and having the fatigue thing as well, i find it very easy to ignore an alarm. what i don't find easy to ignore is a dog. so that's what i have finally got! nurse ratchet!

[firecat]

uses a watch with programmable alarms to prompt her to stand up for five minutes every hour

That's a great idea. I think I will try it. (I also find it very easy to ignore an alarm, though.)

[e4q.livejournal.com]

the watch is the best timer, i think, but lots of things have timers. if screen time is an issue, there are lots of free downloadable timers on the internet.

nice to have a nice noise - meditation bells for instance, which can also be downloaded.

[firecat]

I have about half a dozen different alarm clock/calendar/timer programs on my computer, including a meditation widget with a pleasant meditation bell sound.

But probably the most reliable way to get me out of my chair would be to set the oven timer, which is loud and doesn't turn off by itself.

[selki.livejournal.com]

Check out Liz Henry's write-up of her Hack Ability(FOSS and the world of horribly proprietary physical objects, gadgets, mobility and accessibility devices ... and trying to organize / share info about it) talk at a recent Linux conf: http://geekfeminism.org/2010/01/29/linux-conf-au-part-2/#more-2097
(scroll down, it's there)

[e4q.livejournal.com]

yes.

i had a problem for a while where i tended to forget i was running taps, which tended to result in hot water all over the floor, and at one point flooding the downstairs neighbours. i couldn't do much about the kitchen tap except try not to wander off, but with the bath i had a kitchen timer which was a horrible un-ignorable noise that didn't turn off, which i used for years.

i am not quite as ill as that any more, which is good. and i have my 'nurse ratchet' dog, which is even good-er, since she times my daily activities very assiduously.

[firecat]

Thank you! That's great.