May. 24th, 2009

serene: fuck cancer (fuck cancer)
[personal profile] serene
Hi, all.

I'm Serene, and I've been coming to terms over the past five years with increasing disability in my life. I've got chronic pain that no doctor takes seriously so far (still shopping for one who will), and I've recently been dealing with surgeries, radiation treatments, and hormonal treatments for thyroid cancer. In our family, which includes six adults and a teenager, most of us deal with some disability or other, so I'm fortunate to have a family where I can talk about my frustrations and my little triumphs, and no one looks at me like I'm crazy.

I also work at UC Berkeley in the Disabled Students' Program office, so my day-to-day life involves doing my best to make things easier for university students with disabilities.

I'm transitioning over to DreamWidth, and won't be renewing my paid LJ membership, so I plan to be here for the duration. Glad to meet all of you.
serene: fuck cancer (fuck cancer)
[personal profile] serene
[posted to my journal and to [community profile] no_pity]

In theory, I'm all about finding balance in my life (cf. my decision to work at a good part-time job I love, rather than taking "better" offers for full-time work). But then the balance shifts.

Every bad pain day I have makes my available energy and time and mental oomph a moving target. Having three in a row, as I have this weekend, makes me start feeling discouraged and wondering if it'll ever end. But then I'll have a really good week, and I'll feel bullet-proof, and like I could do anything, and I'll start a magazine or something so that all my time is spoken for, well into the future.

The thing to discover is this: How much can I commit to doing in advance, and not risk the crash of having to drop it all if the pain flares up, or if the hormone pills make my legs feel like big slabs of tender meat?

I won't lie and say I'm not discouraged right this moment, but most of the time, I feel pretty good about my choices around this stuff. Most of the time, I let people know that my time and energy are more variable than they used to be, and I have people in my life who get it, and who don't expect me to do more than I can do. But there's so much I *want* to do, and it's hard for me to remember, on a good day, when nothing hurts, that next week, *everything* might hurt, and I might need to spend the whole weekend popping aspirin and sitting in the recliner.

For those of you who deal with varying levels of energy/pain/wellness, what do you do to keep that stuff on a relatively even keel?
jeshyr: I'm disabled, not dead! (Disabled not dead!)
[personal profile] jeshyr
G'day all!

I'm Ricky, I'm 34 and I have ... umm ... something that might or might not be ME/CFS + EDS or might or might not be a primary mitochondrial disorder.
More details here... )

I'm head of the accessibility team here at Dreamwidth; that's a bunch of us who work at making the site more accessible for those with all kinds of access needs. If you want to read about that, help, or report accessibily issues with Dreamwidth, trot along to [site community profile] dw_accessibility for more information.

Great to see all the introductions! I'd love to read more :)


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