1. The illness I live with is:
ankylosing spondylitis [see posts here, here, and here], fibromyalgia [about me, in general].†
2. I was diagnosed with it in the year:
FM: 2009. AS: 2014.‡
3. But I had symptoms since:
AS: probably early 20s. FM: 2007.º
4. The biggest adjustment I’ve had to make is:
doing a tenth [or less] of what I used to.
5. Most people assume:
because I look okay I must feel okay, that because I bear it “well,” there must not be much wrong or to bear.
6. The hardest parts about mornings are:
2-3 hours of morning stiffness and pain that make it hard to walk, stand up straight, get dressed, stretch like I have to before both get worse, and
waking up tired no matter what.
7. My favorite medical TV show is:
none. I hate the simple formula illness is made into on TV because I know illness is never simple, except from the outside looking in, and I no longer have that luxury.
8. A gadget I couldn’t live without is:
My iPhone. Phone numbers, reminders, texting!, email!, alarms for medications, pain tracking app, pharmacy app, Parkbud [for brain foggy days when I cannot remember where I park], Facebook, Instagram [following photos and people’s joys, yeah], games!, calorie/weight diaries, iTunes,……
9. The hardest part about nights are:
staying asleep through the pain.
10. Each day I take __ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:
am a skeptic and do my research [not Google searches or random websites] before I try anything new. If something works for a symptom or relieves the stress of always being in pain, sick, etc., I’ll do it regularly if it is cost-effective. Because though massage may be great for relieving chronic pain, insurance doesn’t cover it, and that shit adds up fast when you have no damn job.
12. If I had to choose between an invisible illness or visible I would choose:
to be well.
13. Regarding working and career:
That’s a wrap. My career and chosen profession [yeah, 2 separate things] both require a lot of sitting, standing, walking, writing, reading, typing, people skills, etc., and that I be coherent and perform at a decent level for hours at a time. I can have a good few hours, maybe half a day if I am very careful and controlled, at a middling level of any kind of performance but for real? What career? What work?
14. People would be surprised to know:
I feel very vulnerable and afraid for the first time ever of aging.
15. The hardest thing to accept about my new reality has been:
the narrowing of my world, activity level and activities, and options.
16. Something I never thought I could do with my illness that I did was:
maintain a daily yoga and meditation practice. But it makes sense that it took life-changing shit to create space for my self.
17. The commercials about my illness:
are full of shit. The few I’ve seen.
18. Something I really miss doing since I was diagnosed is:
walking! I loved to walk—the dog, the Quarter, Jazz Fest, French Quarter Fest, Freret Fest, parade routes, St. Charles, side streets, malls, campuses, everywhere/thing/time.
19. It was really hard to have to give up:
long walks with my dog.
No. What was hardest to give up was writing fiction. working on novels, every day or at least regularly.
20. A new hobby I have taken up since my diagnosis is:
Since my diagnoses started to pile up, I’ve taken up dropping hobbies and activities.
21. If I could have one day of feeling normal again I would:
walk my dog 3 miles and go to an entire second line parade.
22. My illness has taught me:
what’s really important, how to make the tough decisions about what matters enough to keep and pursue through the pain and sickness.
23. Want to know a secret? One thing people say that gets under my skin is:
“Yes, but what do you do?”
As in what’s your job, what do you do all day but watch TV and eat bonbons while your servants fan you with palm motherfucking leaves. People in the U.S. are obsessed with Work and Jobs. It’s inconceivable to live without one and reasons for that are beyond the common imagination.
24. But I love it when people:
say I saunter like a supermodel. Really, I’m just walking like that because of the pain and walking stick and crappy sidewalks and a need to keep my hips mobile [rather than stuck in place].
25. My favorite motto, scripture, quote that gets me through tough times is:
“There is sickness here but I am not sick.”
From Toni Bernhard’s fanfuckingtastic How to Be Sick, p. 38. Which I expand to:
There is pain here but I am not the pain.
There is tiredness here but I am not the tiredness.
There is loneliness here but I am not the loneliness.
26. When someone is diagnosed I’d like to tell them:
Breathe. Focus on what you can do to improve your quality of life now and in the long-term. And forget about fusing. Like shit and death, fusing happens whether you want it to or not so let it go.
27. Something that has surprised me about living with an illness is:
the friends who have expanded and grown to keep, soothe, nurture and love the living hell out of me.
I have not been surprised by the people I lost.
28. The nicest thing someone did for me when I wasn’t feeling well was:
tell me I am beautiful.
29. I’m involved with Invisible Illness Week because:
all this needs to be said, uncovered, de-invisibled. I am sick, I am in pain, I am human, I am here, and I fight hard 24/7. I have no choice but to keep it 100. And I paradoxically want y’all to cut me slack, a lot, and give me credit for the little I can get done or to almost on time.
30. The fact that you read this list makes me feel:
mixed. I was torn about whether to do this at all because exposure, baring myself/my self, is not what I do, and don’t usually do here. But. This is too important. Even if you don’t believe or give a shit about me, maybe you’ll remember a tidbit later when you see someone in a handicapped parking spot or walking slowly, or when a friend cancels again at the last minute or wants to but can’t quite ask if you will, because s/he is flaring or tired or out of spoons for the day, come over and watch Netflx and eat air-popped popcorn, for one movie only. Because, y’know, I got to go to bed early, pills, heating pad, all that, y’know. But…..
I’m too tired, I’m so very tired
and I’m feeling very sick and ill today
but I’m still fond of you*
*The Smiths, of course.
† And…fuck, ok, yeah, OSFED [ok and for reals].
‡OSFED: pfft. Never. Officially. But almost by a psychiatrist because my BMI is acceptable and has never been recorded officially as unacceptable but I report…symptoms and signs.
ºSince high school at least.