invis-ability

Blog meme brought to my attention by the Delightful Jo, which she linked from here.

[eta: And said Delightful Jo has SPOKEN.]

1. The illness I live with is: Physically, something that could be either fibromyalgia or chronic fatigue (CFIDS for brevity’s sake*). Mentally, I’ve fought BPD, depression, and a whole range of anxiety and panic issues.

2. I was diagnosed with it in the year: The brain stuff? Confirmed aged 17, in 2003. That’s a story for another day, but remind me to tell it. The body stuff? February. Yes, of this year.

3. But I had symptoms since: Eff me. Brainwise, seven. Bodywise, eighteen, a very clear memory.

4. The biggest adjustment I’ve had to make is: Paring down my career choices as I’ve gotten worse. I need good health insurance, for a start, and a way to accommodate whatever physical manifestations crop up. Basically, I have to be able to do it from a comfy place, and wherever I do it has to be fully accessible if I do end up using assistive tech. Relative flexibility of schedule would be a welcome bonus.

5. Most people assume: Two things. 1) That it’s all my mental illness. No, I can spot the difference between the conditions. 2) That there’s nothing happening. Fine, and you can damn near pass out after a normal shopping excursion.

6. The hardest part about mornings are: Actually having mornings, not noons or afternoons. Weird adrenaline surges on waking. Hangovers despite never drinking.

7. My favorite medical TV show is: M*A*S*H. What else for an Army brat?

8. A gadget I couldn’t live without is: Tie between my laptop (for when I’m bedridden), my smartphone (for when I’m not even laptop-capable) and the smartphone’s car charger (for emergencies on my rare solo excursions).

9. The hardest part about nights are: Nightmares. Endless. Fucking. Nightmares.

10. Each day I take five pills, one vitamin, and tincture of valerian. I need a LOT to tame this brain.

11. Regarding alternative treatments I: keep my own counsel. I trust herbs because they’ve done a lot of people a lot of good for centuries — within reason. Give me the proven treatments, like valerian. Like ginger. I have not yet tried a lot of things. At the same time, I’m skeptical of a lot of allopathic ideas as well. I refuse to mess with gabapentin, for example.

12. If I had to choose between an invisible illness or visible I would choose: Visible! Shit yes, visible, because then I’d get taken seriously! Oh, but only if I get to ditch the invisible ones. No sense, say, losing my legs AND still dealing with all this crap.

13. Regarding working and career: Oops! Answered that one.

14. People would be surprised to know: …that I have anything wrong at all. The people who do know are not surprised, because I’m pretty open. All right, they might be amazed that I can ever walk in high heels. 😉

15. The hardest thing to accept about my new reality has been: Not flying anymore. I lost so much when I stopped being able to fly. Please don’t ask me to elaborate. It hurts too much.

16. Something I never thought I could do with my illness that I did was: survive this long. But I’m alive. Let’s hope I don’t join the 27 Club. I’m not posh enough to fit in.

17. The commercials about my illness: appear to ignore the reality that people UNDER forty get hit, too. By all of it.

18. Something I really miss doing since I was diagnosed is: Brainwise, travelling. Bodywise, this may surprise you — playing my flute. Singing takes less stamina, so I have some music in my life, but I miss putting my lungs through their paces. I miss bobbing and swaying with the song.

19. It was really hard to have to give up: the future I always imagined.

20. A new hobby I have taken up since my diagnosis is: Crochet is relatively easy and soothing.

21. If I could have one day of feeling normal again I would: fucking well turn it down. There is nothing significant that I can do in one day. I need two at the very least, non-consecutive, preferably some weeks apart. And I need them years ago. So.

22. My illness has taught me: that even professionals are fallible. Very fallible.

23. Want to know a secret? One thing people say that gets under my skin is: “You must be depressed/anorexic. Let me refer you to…” Look, you mean well, but I know myself. I am my own continuity of care. Sit down, shut up, and let me tell you what you can do for me.

24. But I love it when people: Sit down, shut up, and LISTEN. Especially if they don’t comment on the cussing. I no longer sugarcoat certain realities.

25. My favorite motto, scripture, quote that gets me through tough times is: “Do what comes next.”

26. When someone is diagnosed I’d like to tell them: You’re not alone. But it ain’t easy. From here on out, you are your own best advocate, and you will need yourself.

27. Something that has surprised me about living with an illness is: I have been surprised by the community. Other people dealing with this? Advocating for our rights to live as any TAB**/NT*** person? And I can help just by writing? Sign me UP.

28. The nicest thing someone did for me when I wasn’t feeling well was: I won’t ever forget the time Meryl brought me mint tea — I think she made it in a Pyrex measuring cup because it was all we had! It’s one of the only good memories from that first nasty flare. You can’t see me, but I’m smiling just thinking about it. Thanks, Meryl.

29. I’m involved with Invisible Illness Week because: Wait, we have a week?

30. The fact that you read this list makes me feel: Maybe like I’m doing something right. Maybe.


* Brevity, moi? I know. Do try to contain your laughter.
** Temporarily Able-Bodied
*** Neurotypical

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2 thoughts on “invis-ability

  1. It’s not comparable in the day-to-day, but I have a level of understanding since having to go gluten-free, and the way people sometimes just can’t parse what you’re telling them about how it works and how it feels and how, even if I look fine on the outside, my guts can be murdering me on the inside. My ever-increasing period pain also makes me understand when someone says, “It’s all screwed up inside, not outside.”

    I’m always so happy when you’re honest and informative about how you’re feeling and how it affects your day-to-day. You’re helping me better understand, and I hope that means that other people are understanding better as well.

  2. I’m glad I can give you this window into my world. I try not to make La Maladie the focus of my life, and I hope I get slapped good if I start coming off as some sort of martyr. I don’t ask for pity. I do this for the understanding, not some sort of “oh, poor little thing” points. Well, not unless I say, “Hey, I could use some consolation. Got any pity to spare?” 😉

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