| [ |
mood |
| |
 drained |
] |
Back in September some time was Invisible Chronic Illness Awareness Week or some such thing, and shortly after that there was an awareness week for mental illness and then (maybe now?) there was a general disability awareness thing.
Anyway, there was this survey going around back during the invisible illness week and I never got around to doing it myself, because, well, that often happens when you have chronic illnesses - you don't get to things in time or sometimes ever. But I decided to finally do it, because a good philosophy for someone who is chronically ill is "better late and done half-assed then never done at all", right?
1. The illness I live with is: fibromyalgia primarily, with many sub-illnesses that go along with it; also herniated discs, allergies, asthma, and the mental illnesses: depression, ocd, and ptsd.
2. I was diagnosed with it in the year: allergies - not sure, had them forever, depression - 1990, fibro - 1994, ocd and ptsd - sometime in early 00's, back stuff more mid 00's.
3. But I had symptoms since: depression and fibro both around 1987, back stuff probably gradually over the years, the rest since I was a very small child.
4. The biggest adjustment I’ve had to make is: when it got suddenly and severely much worse about eight years ago, that was the biggest adjustment. Just trying to learn to live a more homebound life, be more dependent on other people, etc. Very hard adjustments.
5. Most people assume: I think most of the people close to me know what it's really like for me, and for that I know I am incredibly lucky. Other people may think that I'm exaggerating my symptoms, that I'm addicted to pain pills, that I'm not trying hard enough, that it's all just the depression or "all in my head" in some other way, or that I'm just lazy. People who see me out in public probably vary a great deal - pity, disgust, judgments that I'm too young to need a cane or walker, sympathy, empathy, or just plain not giving it a second thought.
6. The hardest part about mornings are: waking up. Seriously. Either I wake up on my own way too early without having gotten any quality sleep but unable to go back to sleep, or I wake up to an alarm at an appropriate time feeling grumpy and sore, or I wake up way later than I should having finally gotten some rest but being super out of it and unable to function much for half the day.
7. My favorite medical TV show is: I have no idea how this relates at all, but I enjoy Grey's Anatomy and the new show Mercy.
8. A gadget I couldn’t live without is: so many to choose from.... we'll go with the shower chair. Even with it, showering is incredibly difficult for me and I often end up just cleaning up with wipes and such, but sometimes I need the full shower and would not be able to do it without being able to sit throughout.
9. The hardest part about nights are: waiting until I'm allowed to take my nighttime meds. I take my stronger pain meds at bedtime both to help me sleep and because then I'm not doping myself during times I'm trying to be functional. And there are days when I'm literally just counting the minutes until it's late enough for me to take them.
10. Each day I take: four vitamins, and anywhere from fifteen to twenty-five pills, plus sometimes a medication that is mixed into a beverage, and various teas, pain relief patches, and foods that help ease certain symptoms.
11. Regarding alternative treatments I: do a lot of stuff on my own, but can't afford to try anything on my long list of things that I think might help because insurance does not cover them (acupuncture, cranial sacral, etc.).
12. If I had to choose between an invisible illness or visible I would choose: visible as long as it was comparative or less severe than what I already experience. While I wouldn't take on something even more difficult to live with just so that people could readily tell I was sick, it would be nice to not constantly feel like I have to defend the very real fact that I am in fact chronically ill. OTOH, I do recognize there are other problems involved with having a more visible illness or disability - in that when I have my cane or walker with me I might get less judgey "why are you parked in that handicapped parking spot" looks but more just general strange looks by people who think it's perfectly acceptable to stare at anyone who presents differently from them.
13. Regarding working and career: I am incapable of working now. At all. Well, possibly I could work a job where the hours were completely up to me and the employers were fine with my working an hour one day and then nothing for a few weeks and then a few hours a day for 2-3 days and then nothing for a month or so, etc. But since that's not really a job that so much Exists ... I can't work.
14. People would be surprised to know: that I literally cannot remember what it's like to not be in pain. It amazes me to consider that most of the people in the world do not feel serious pain all over their bodies all the time. I can't even begin to imagine what that might be like. It seems ... impossible.
15. The hardest thing to accept about my new reality has been: how very little control over my own life I really have. Especially hard for the OCD.
16. Something I never thought I could do with my illness that I did was: go to WisCon this year! I am now considering other big event things that I've generally considered out of bounds for me. However, WisCon is a very access-friendly event, so that made it a lot easier for me.
17. The commercials about my illness: are somewhat kinda doing good work spreading awareness, even if it is through the guise of trying to sell medication.
18. Something I really miss doing since I was diagnosed is: well, since my diagnosis went from mild to severe anyway: going out dancing, going to amusement parks, going on long road trips, being spontaneous and not having to plan for all kinds of health issues, taking long walks ... oh wait, this only asked for one thing. *sigh*
19. It was really hard to have to give up: the fanciful idea that I did not need medication and could cope with my condition just with keeping to a decent sleep and exercise schedule and eating right. When things got worse? That idea went out the window.
20. A new hobby I have taken up since my diagnosis is: coloring. It keeps my hands busy and my mind happy on sofa-bound days when I'm able to do at least a lil more than just lie there.
21. If I could have one day of feeling normal again I would: Jump up and down. No, really. I would. And it would feel soooooooooo good!
22. My illness has taught me: that it's okay to go slowly sometimes.
23. Want to know a secret? One thing people say that gets under my skin is: if only you thought more positively, you might feel better. [HULK. SMASH.]
24. But I love it when people: ask me how I'm doing in a manner that suggests they ACTUALLY WANT TO KNOW the answer. And then they listen thoughtfully, whether it's a good bad or neutral answer, and give the appropriate celebration, empathy, or encouragement in response.
25. My favorite motto, scripture, quote that gets me through tough times is: "when you're going through hell ... keep going."
26. When someone is diagnosed I’d like to tell them: You are not alone. This will be a rocky road, and you'll likely have to try all kinds of things before you find the right treatment plan for you. But your life is not over. And it will be okay.
27. Something that has surprised me about living with an illness is: how many awesome people out there are also sick, and how easily we can find one another online and in other ways and reach out to each other. :)
28. The nicest thing someone did for me when I wasn’t feeling well was: just accept it; that this is the way things are for me and not try to push me or judge me, knowing I do enough of that to myself as it is.
29. I’m involved with Invisible Illness Week because: it's very important to me to spread awareness.
30. The fact that you read this list makes me feel: hopeful. Now you can help spread some awareness, too.
|
tired
angry
hungry
blah
stressed
sad
2 (25.0%)
contemplative
crappy
excited
content
impressed