[Disability] Invisible Illness Awareness Week

[kaninchenzero]

Via karjack. It is Invisible Illness Awareness Week. Y'all are already aware I have some, but I figured I'd do the questionnaire anyway.

1. The illnesses I live with are: Fibromyalgia Syndrome. Chronic urinary tract infections. Mental illnesses including major depression, depressive psychosis, and an autism spectrum disorder.
2. I was diagnosed with [them] in the year(s): 2000, 2006, beginning in 1992.
3. But I've had symptoms since: I was fifteen and my knees hurt all the time. 'Growing pains,' they told me. 'Happens to everyone. You'll grow out of it.' I didn't.
4. The biggest adjustment I've had to make is: I am having to come to terms with the fact that I am not capable of working outside the home. At least not full-time. I'll see what more I may be capable of later.
5. Most people assume: That I am neurotypical (because I put a great deal of effort into appearing neurotypical) and that because they've been sick or injured they know what living with chronic pain is. Either I'm some sort of super-powered saint for enduring it or it's not that bad.
6. The hardest part about mornings is: Making myself get up and go to work never mind how much it hurts. I cry a lot.
7. My favorite medical TV show is: Mental. I like House because Hugh Laurie is a wonderful actor and very easy on the eyes, but the misogyny has been piling up deeper and deeper as the seasons pass and it's getting hard to breathe in there.
8. A gadget I couldn't live without is: My computer. It's where most of my social life is. I have a new phone that's an adequate substitute for when I can't get to the machine but it doesn't have the memory to do much on the web.
9. The hardest part about nights is: Lying in the dark with my thoughts racing and my body screaming at me.
10. Each day I take [?] pills & vitamins. Morning: zestoretic 10mg/12.5mg, spironolactone 100mg, 2x estradiol 2mg, omeprazole 20mg, cyclobenzaprine 10mg, topiramate 10mg. Afternoon/Evening: spironolactone 100mg, 2x estradiol 2mg, cyclobenzaprine 10mg, topiramate 10mg, nitrofurantoin 100mg, vitamin D 1000IU. Bedtime: zolpidem CR 12.5mg, 2x topiramate 10mg, milnacipran -- I'm tapering up to the therapeutic dose on a starter pack, 2x melatonin 1mg. Throughout the Day as Needed: 6x tapentadol 50mg, modafinil 100mg.
11. Regarding alternative treatments, I: I find massage relaxing, especially when the therapist isn't marvelling over how not-relaxed my muscles are and telling me to loosen up. "I have a disease, nice therapist person. I cannot loosen up. That is why I come to you." I've tried acupuncture and found it not particularly helpful. My family doctor tells me I should exercise more but right now all my energy goes into getting through a work week. Maybe after I'm not working any more I'll try to move more.
12. If I had to choose between an invisible illness and a visible one, I would choose: I don't play this game. It's divisive and unhelpful. "What would you rather be?" asks Peter Griffin, sitting around a campfire with Joe, Cleveland and Quagmire. "Black or a cripple?"
13. Regarding working and career: Since my diagnosis I have pushed my body to its limits and then some (see 10, above) to keep working. I have reached those limits and very soon will not be working. Eventually I will start thinking about what I might be able to do -- probably writing -- within my actual limits but I am planning on some time just being sick and trying to be less so.
14. People would be surprised to know: That I have three Hello Kitty pocket rocket vibrators? I don't know.
15. The hardest thing to accept about my new reality is: That it will never, ever get better. I will never not be sick.
16. Something I never thought I could do with my illness was: Kill a man with a teacup. I still think I couldn't kill a man with a teacup, but who knows?
17. The commercials about my illness: Piss me the fuck off. They're all old affluent white women, everything's shot in soft focus with light music. I guess younger folks and brown people and men don't get this disease. Phew, what a relief! And the way they talk about it reminds me of the way the Victorians romanticized tuberculosis.
18. Something I really miss doing since I was diagnosed: Walk. I can still walk, but not like I used to. When my brain was spinning on its hamster wheel and wouldn't let me sleep I'd walk for hours. Now? Not a fuckin' chance.
19. It was really hard to give up: Working. I've never had much beyond entry-level jobs -- like most people with autism spectrum disorders -- but I've been working most of the time since 1995. It's going to make things really hard financially for my wife and me, and her father and brother aren't good at understanding that people have value beyond the stuff they've amassed or how much money they make in a year or that the most remunerative choice is not always the best choice. Like when her mom was dying from cancer, she quit her job, moved to El Paso, burned through her retirement account taking care of her. No one else wanted to even face up to the fact that she was dying. But that was my wife's choice, so they don't have to acknowledge that it was an enormous fucking sacrifice. I love my in-laws but some of them are really crazy.
20. A new hobby I've taken up since my diagnosis is: I haven't -- the hobbies I had before provide a pretty good range of stuff that I can do at most pain/energy levels. On good days I write, on not-so-good days I play console games, on worse days I read, and on the really bad ones I put DVDs in and watch anime.
21. If I could have one day of feeling normal again, I would: Sleep, and feel actually rested.
22. My illness has taught me: That the temporarily able-bodied have not the least fucking idea of what to do with someone else's unfixable pain.
23. Want to know a secret? One thing people say (about my illness) that gets under my skin is: Oh, you must be so strong, so brave! I could never live with what you do. Yes you fucking well could. It's even easy. You get cake -- though the cake is filled with framing nails and broken glass -- or death. We've got some cake left but it's running out fast. What's it gonna be?
24. But I love it when people: Say, "Oh that sucks, I'm sorry."
25. My favorite motto, scripture, quote that gets me through tough times is: "Fuck fuck fuck fuck fuck fuck fuck fuck fuck." I came up with that one myself. Could you tell?
26. When someone is diagnosed I like to tell them: Oh, I'm so sorry. That sucks. If you need to talk to someone about it I'm here.
27. Something that has surprised me about living with an illness is: That chronic urinary tract infections were part of the FMS constellation. I didn't think it was even possible with the sort of genitalia that get one identified as male at birth, but it is and apparently once established is there for ever and always.
28. The nicest thing someone did for me when I wasn't feeling well was: Gave me a home when I'd put a hole through my hand. Thanks, mom.
29. I'm involved with Invisible Illness Week because: Because the ACT UP folks were dead fucking right. Silence = Death.
30. The fact that you read this list makes me feel: Eh. I've been putting a lot of this stuff out into the interwebs recently anyway, helping to carve out safe spaces for other people who've lived through some or all of the things I have. My ability to be an activist is limited in many ways: I'm poor and can't donate much money. I'm crippled and can't do volunteer work that's physically demanding. All I've got are my words and my life so I use them.