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30 Things About My Invisible Illness You May Not Know (for Invisible Illness Awareness Week)

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in A bit TMI,C'est MOI

With Invisible Illness Week wrapping up, I was determined to blog again (as promised) & what better way than to do the meme created for the event. These 30 queries have been 3 days in the answering but I hung in there because awareness of illnesses & issues that are so often not recognized, much less understood, is crucial to the well[ish]-being of those living with them. For a better understanding of what I’m living with & the journey therein, be sure to read my first IIW post: What’s getting in YOUR way?

  1. The illness I live with is: still undiagnosed
  2. I had a doctor once & she charged on a sliding scale. Ruling out what she could, she admitted I need more extensive testing which, of course, we couldn’t afford. Instead, she taught me about Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome) & Fibromyalgia — convinced I had at least one, if not both — & helped me learn more about supplements.

    My=muscle / algic=pain
    Encephalo=brain / myel=spinal cord / itis=inflammation

  3. I was will be diagnosed with it in the year: I become insured
  4. Knowing a diagnosis would leave me essentially uninsurable, my one doctor & I didn’t pursue our well-founded suspicions. Further knowing a diagnosis alone wouldn’t help if it couldn’t be followed up with care — welcome to a healthcare system that’s been broken a long time — we just sought to alleviate symptoms, never imagining I’d still be doing so 15 years later.

  5. But I’ve had symptoms since: childhood
  6. I didn’t start putting the pieces together til my mid-20s but, by then, my Chronic Daily Headache was nearly a decade old. A key revelation came as I researched migraines; the overwhelming head pain that comes above & beyond my always present headache. They often present abdominally in children & I’d been treated for “stress” stomachaches in my youth.

  7. The biggest adjustment I’ve had to make is: brain damage
  8. My struggle to function is a chicken or the egg quandary. The dysfunction stems from my brain misfiring & misunderstanding its own information as my body uses up any energy it manages to generate trying to function, leaving my brain vulnerable. Our minds & bodies are designed to restore themselves regularly but mine can’t thus they degenerate.

  9. Most people assume: I’m exaggerating
  10. How could a headache last well over two decades? You couldn’t possibly have it every day! How could you not remember your childhood?! Surely you mean you just don’t remember it well!? Given that I too would love to better understand how such things are possible, if anything, I understate. Declarations without explanations are frustrating from both sides.

  11. The hardest part about mornings is: trying to move
  12. It’s admittedly better now that we have some semblance of a bed. After sleeping on the floor for years, our sofa-bed is an utter God-send. Having someplace to sit during the day also rocks but getting to that point can be tricky. Not only is my sleep not as restorative as it should be, it actually creates extra pain since I can’t maintain the needed support for my parts.

    “Taking time to rest improves the rest of our time.”
    ~ Dorian Rhodes ~

  13. My favorite medical TV show is: House
  14. While I love sarcasm & brilliance run amok, Greg House’s determination is especially appealing. He’s dealing with chronic pain, fighting to differentiate his legitimate need for drugs from drug-seeking & not letting other people’s agendas stop him. His determination to solve each case leaves me hoping I’ll one day have a doctor that fights that hard for a diagnosis.

  15. A gadget I couldn’t live without is: my MacBook
  16. Macelangelo, as he’s known, is my connection to the world at large. I’ve been without a computer too often; most recently, before moving to Palm Springs 2 years ago. My physical world is just too damn small without the interwebz. I have no local support, no personal transportation & no other means of staying in touch with family or friends.. nor would I have as many friends!

  17. The hardest part about nights is: sleeping
  18. It’s hard to get to sleep, harder to stay asleep & hardest to get enough sleep. With me being tired all the time, you’d think sleep would come easier but, since it doesn’t, I’m all that much more tired. Vicious cycle, anyone? To add insult to injury, between my brain’s misfirings & being woken by pain that occurs if I stay in one position too long, my sleep’s not deep enough.

  19. Each day I take __ pills & vitamins. thirteen[ish]
  20. Until I can avail myself of healthcare, meds are rare & I can’t currently afford all the supplements I need. The non-negotiables though are a couple Beano before meals, a multi-vitamin at breakfast, Cranberry capsules with lunch & dinner, daily detox, plus a Melatonin at night. I also allow myself constant ibuprofen one week a month & am rationing my last Rx of Vicodin.

  21. Regarding alternative treatments, I: love yoga
  22. Yoga is what got me working again, five years ago now. That job lasted until a fall onto my back which the doctor then recommended yoga for. 😉 The breathing & stretching remain part of my coping arsenal but I long for the day I can return to yoga classes. I also know full well that massage & acupuncture make a positive difference but am unlikely to have such options.

  23. If I had to choose an invisible or visible illness, I’d choose: neither
  24. Seriously, if there were a choice.. but I digress. If I had to choose a disease, I’d opt for just about anything less debilitating. That’d be doubly handy as many visible illnesses are. While it can be nice to “not look sick,” I’m not sure it makes up for the reactions using a motorized cart in a store gets me. Meanwhile, I have been treated better since using a cane.

    “Given the choice between the experience of pain and nothing, I would choose pain.”
    ~ William Faulkner ~

  25. Regarding working and career: I miss people
  26. My various jobs have each tapped into my creativity in some way & “working” online fortunately does as well. What my online projects can’t provide is the wonderful randomness of the public. Not that there’s a lack of people, obviously; I mean, here you are (& thanx) yet I miss the unexpected interactions, the smiles & hugs, the people-watching, my customers.

  27. People would be surprised to know: how difficult tasks are
  28. I’m continually surprised by the complexity of the simplest things. I’ll be doing something I’ve done before but not remember how. I’ve accepted that I don’t remember things but simple tasks should be doable by rote, no? Instead, I’m constantly relearning everyday routines. Shoe-tying, egg-boiling & other such mundanities require way too much concentration.

  29. The hardest thing to accept about my reality has been: thinking
  30. As a student of thought/collector of ideas/lover of concepts, I mourn the unfettered ability to think. Because I do still drink deep of all that I can, as I’m able, the loss may be as invisible as the illness causing it yet my brain often shuts down altogether. I truly believe God is in the details so the blurrier my thinking is, the more disconnected I tend to feel.

  31. What I never tho’t I could do while ill but did was: be consistent
  32. My fear of being unable to follow through hasn’t kept me from attempting to, mind you. I have a blog that’s been on an unplanned hiatus since January, am halfway through last February’s HaikuWriMo at deviantART, seem to be collecting unfinished poems & posts.. to name but a few attempts. However, there’s hope for, even when I couldn’t really write, I kept up on Twitter. 😮

  33. The commercials about my illness: are aggravating
  34. Mine is as yet unnamed but the various possibilities are addressed & I resent the implication that a pill will fix me. This is yet more rampant online where, amidst all the support sites & articles, lie (pun intended) those proclaiming cures. The only thing I can be sure I have is autoimmune dysfunction which needs funding for research, not incomplete treatments.

  35. Something I really miss doing since I was diagnosed is: dancing
  36. I never did get the dance lessons I wanted but it would be harder yet to have an actual skill set & not be able to use it. Despite being untrained, dancing was once my therapy with dance clubs providing escape. It’s been over five years since my last dance — lost to the music & the crowd — which led to being carried off the dance floor & ending up bed-ridden. 😐

  37. It was really hard to have to give up: constant coffee
  38. Rest assured, your coffeesister still allows herself one a day. It is a health drink, after all. Although coffee’s been my constant companion for as long as I can remember, my compromised health can’t take too much of a good thing. Hot beverages being a therapy I can’t live without, my morning coffee’s followed-up with black tea then green & I wrap up my day with herbal.

    You don’t have to be still with a hot beverage for it to be therapeutic but you’ll be better off for every pause you let it create. (from Finding friendship, drink IN hand)

  39. A new hobby I have taken up since my diagnosis is: letting go
  40. Letting go of guilt, chores, the rest of that to-do list or whatever threatens my time &/or sanity thus health is freeing as well as necessary. My time is spent on self-care rather than self-doubt if not bogged down by more than I can possibly do, much less guilt over what’s not done. To-do lists are a lot looser now; I do things not only as I get a chance but if I get a chance.

  41. If I had one day of feeling normal I would: dote on my Hunny
  42. Setting aside the question of what the Hell normal is, the thing I resent not being able to do day after pain-wracked day is take care of my husband even a fraction of how well he takes care of me day in & day out. I’d love to be able to put his needs first for a change, not that they never are but mine inevitably rear their helplessly needy head. He so richly deserves a day off!

  43. My illness has taught me: to slow down
  44. Perhaps my insomnia since childhood was a symptom of a more compromised system than yet known. Filling those extra hours over the years provided a distraction. By not slowing down, I kept from having to face how I really felt. I could contend being too ill to continue college was just the result of overdoing. All I had to do was find a better balance, right?!

  45. One thing people say that gets under my skin is: get well soon
  46. While such well-wishers are well-intentioned, which I do appreciate, the implication that I can “get well soon” belies the reality of my situation. I’m not even sure I’ve ever been well & can’t count on ever being well, dealing as I am with not just chronic but debilitating health issues. Thus, when someone who’s known me for a time uses this phrase, it feels dismissive.

  47. But I love it when people: insist on helping
  48. Innate self-reliance makes it hella hard to ask for help yet I need it. If someone helps without being asked, much less insists on doing something for me, it’s an unqualified gift; I’m able to avoid the extra pain & save a little energy while not putting anyone out. It’s an acknowledgment — as much as a reminder to me — that I need help but, moreover, that they understand.

  49. My favorite [concept] to get through tough times is: the yin-yang
  50. The yin and yang represent all the opposites found in the universe; each having within them the seeds of their opposite state, that is, sickness has the seeds of health, health contains sickness, wealth, poverty, etc. None can exist without the other &, to the extent we experience anything, we become capable of experiencing its opposite. Seek that seed in every circumstance.

    “Don’t curse the darkness – light a candle.”
    ~ Chinese Proverb ~

  51. If someone’s diagnosed I’d like to tell them: your illness isn’t you
  52. Our bodies — being physical — are but part of our circumstances. They & their maladies may effect who we become, as any external force can, yet who we are at our core is up to us. Just as my smile, though initially noticed due to my overbite, is remembered instead for its warmth; whatever your body’s putting you through is distracting but temporary, don’t lose yourself to it.

  53. What surprised me, living with an illness, is: it doesn’t get easier
  54. As fatalistic as that may seem, I’m not saying there’s not improvement in the illness itself or my ability to cope with it. However, the understanding that I could get worse again at any given moment is a constant. My condition has roller-coastered year after year, I don’t know what I’ll be dealing with moment to moment, having my life held hostage doesn’t get easier.

  55. The nicest thing done, when I wasn’t well, was: remembering me
  56. It’s natural to meet silence with silence but some remember my many silences aren’t by choice, won’t shrug off yet another absence, remember what I’m struggling with & reach out despite my inability to. Quotationaries to blogging, a shout-out into the voids can spark the energy needed or bridge the neglect. My love to all who’ve checked in if I haven’t tweeted for a time.

  57. I’m involved with IIW because: understanding leads to progress
  58. From the empathy we with invisible illnesses can share to the better understanding we can foster in those who know us to a clearer picture of the health issues that are a possibility for all of us therefore the true state of our so-called healthcare system, each epiphany paves the way for progress. Seeing these invisible struggles, how do we all not seek to ensure care?

  59. The fact that you read this list makes me feel: grateful &..
  60. I’m overwhelmingly grateful: Grateful that my blog still gets readers (given how much my illness interrupts its flow), grateful you care enough to be here, grateful my experience may make a positive impact & hopeful. My hope is that you’re taking something you can use away with you & that you’ll return. I hope to keep sharing & learning from each other — tell me something I may not know in the comments — for, together, we can change the world.

(|_|*cheers*|_|)
“Joy is your sorrow unmasked. And the selfsame well from which your laughter rises was oftentimes filled with your tears. The deeper that sorrow carves into your being the more joy you can contain.” ~ Kahlil Gibran

UPDATE: I’ve now had health care for just over a year which has led to two confirmed diagnoses so far, Endometriosis & Migraine.

PS: Here’s a sampling of others’ “30 Things..”

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