August 13th, 2011

asleep at mal 9/09

(no subject)

It's been quite some time since I've posted here, mostly because I haven't wanted to spew my anger and despair all over the place. The world is going to hell, our governments are failing us in tons of ways, and a lot of people can't seem to understand their own privilege. But rather than rail about politics or equality or how crappy I feel at the moment, I have a specific thing to discuss.

I keep calling people out on this in person, and it is not getting through, so perhaps writing it down will give everyone time to process what I'm saying. I have had enough of being asked when I'll get better, when I'll be back to normal, of being told to get well. It's really simple - I have multiple chronic illness, none of which have cures, and several of which don't have effective treatments; there is no fucking better, and this is the new normal as much as I hate it.

I have good days and bad days (more bad than good the last few weeks), but the problems never go away. The pain drops from a 10 (nauseous) or 11 (really nauseous, can't think about food, but not throwing up yet) or an 12 (throwing up because I hurt so bad) to at best a 5. At 5 I still hurt, but I can take less pain medication and do more than 1 thing today - ie: go to the store OR shower and shave, then later on go out with friends OR dance for a little bit. I should note that all these levels are with medications that help without dulling my brain more or making me sleep. The numbness is covering more area now, but staying in the 5-10 range, and I've gotten better at coping with it so I hurt myself less often.

The thyroid disease and associated immune failures are never going away, but the doctor and I have found the right medication to keep my metabolism functional, I get boosters and immunizations regularly to help minimize my risks, and I keep my distance when people are sick. The memory loss continues, and I still don't drive. And the side effects from 'lyrica fail' are ongoing over a year and a half later - hyper- and para-osmia and constant ringing in the ears don't stop, I just have days when they're not as bad/obvious.

I love all my friends and family, and the support and love you give me is invaluable. But please stop with these questions, don't ask me why I've got my cane today (hint - my pain is bad or we're doing more walking than I can handle without it), and allow me to enjoy your company in whatever way I can.

The two pieces below are great things for you to check out as well - they're written by people with chronic illness and cover some of the realities I deal with daily.

http://www.butyoudontlooksick.com/xmedia-press/new-video-christine-miserandino-reads-the-spoon-theory/

http://hoydenabouttown.com/20110813.10393/border-gimps-living-on-the-border/
asleep at mal 9/09

Cross post failure...

This was originally written 6/24/11 for a blog carnival about best friends.

I have several, but one has been there for me through worsening health and an ugly divorce in ways that I never expected. I moved across the country (from DC to LA) into an apartment in his and his husband’s back yard in 2006, knowing that I had friends and a safe place to land but unsure of anything else (including whether we’d get along well enough to share space for any length of time).

When I moved, I had some health problems, but nothing like I struggle with today – my thyroid was sort-of under control (although I was diagnosed wrong, and the wrong medication probably helped the other failures progress more quickly), but other than that and the pain I’d been living with for years I was OK. B helped me adjust to a new community. I was lucky that he knew almost everyone so I had an intro to lots of people, many of whom have become good friends, and he listened to me when I was flipping out about all the shit that was going wrong with my divorce and my health.

But more importantly, B called me out when I started behaving oddly and was obviously struggling with higher pain levels, and helped me research and find a new doctor who diagnosed my thyroid disease properly as Hashimoto’s, and eventually diagnosed fibromyalgia, chronic fatigue syndrome, and auto-immune adrenal dysfunction to go along with it. And when I didn’t know I was having horrible side effects from Chantix, B told me if I wanted to kill myself he’d do it for me; if not I needed to get off that and quickly. He’s one of the main reasons I went to Burning Man in 2008, which was an awesome experience, and probably the last chance I had at going as someone who is disabled but still walking; I want desperately to go back, but if I do it’ll have to be with some sort of motorized personal transport – there’s no way I can do the walking required ever again.

B has also asked for feedback when he needs a level head, shared his kitchen and cooking duties with me, and invited me into his home. In short, he’s become a friend in every meaning of the word, and is a very important part of my chosen family.

The other best friend I want to talk about is my primary partner; someone I got very lucky to ask out at the right time in our lives. T has seen my health go from OK but not great to ‘what the fuck is wrong with me’ as my body and brain have failed. He’s talked me through my first seizure, been patient when the Transient Global Amnesia means I’m repeating myself for hours, and helped me maintain at least a semblance of independence through all the changes.

I’m grateful in many ways for his support and love, his positive attitude and his ability to cut through my stubbornness without making me feel like a failure. T also asks me for approaches in talking to coworkers, a different attitude toward some programming problem, or feedback on something he’s working on but is too close to see. And I adore him for learning how to make some of our favorite meals (I’m on an uber-restricted diet) so he can cover when I’m too out of it.

The fact that T knows I feel better when I get some sort of exercise regularly and goes out of his way to make sure we work out together is another bonus (and I need a partner to workout – I’ve hurt myself too many times because I can’t feel pain in my extremities). And he accepts me for who I am without question – bisexual and ethically non-monogamous are part of how I’m wired, and not being asked to give those things up are important, even if I don’t always have the energy to act on other attractions.

In short, my best friends (and there are more, but they live on the right coast and I don’t get to see them as often) are awesome people. The fact that they care about and for me, broken and all, is part of what keeps me from falling into a pit of despair at how narrow my life feels in comparison to a few years ago.