Sunday, September 13, 2009

30 Things About My Invisible Illness

Teri Robert of MyMigraineConnection had recently posted this on her blog, From Teri's Keyboard, and asked all of us who follow her to participate.

Here's what Teri said on her blog:
Anyone who has Migraine disease or another headache disorder knows what it's like to live with an invisible illness. People can't see our illness. There are no outward signs. No physical scars, canes, wheel chairs, or any of the other outward signs that can alert people that a person is living with an illness.

Invisible illnesses are easy for "healthy" people to ignore. Unfortunately, so are the difficulties of those who live with these diseases. This adds to the burden of disease and makes lives even more difficult.

Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a "meme," 30 Things About My Invisible Illness You May Not Know.

So here we go:

1. The illness I live with is: Migraine disorder (including Chronic Migraine and Migraine Without Aura), migraine-related vertigo, chronic allergies and sinusitus, and multi-joint chronic tendonitis. Thanks to the migraine disorder, I struggle with depression - yay, mood fluctuations. This meme will focus on the migraine disorder.

2. I was diagnosed with it in the year: 2005

3. But I had symptoms since: At least since college, maybe earlier; I always thought I just had really bad sinus headaches. It was only when I collapsed at work at my MA program that they diagnosed me with migraines.

4. The biggest adjustment I’ve had to make is: having to say no to things and people I really want to say yes to because I'm in too much pain, or the environment has too many triggers.

5. Most people assume: that I "just have headaches," and I must not be doing enough for them because I'm in pain so often.

6. The hardest part about mornings is: eating breakfast. I'm often nauseous first thing in the morning, no matter how I feel the rest of the day.

7. My favorite medical TV show is: ? I've watched House occasionally.

8. A gadget I couldn’t live without is: probably my computer. I've lived for a months without a phone, but I'd go nuts without a computer.

9. The hardest part about nights is: the dizziness, especially while laying down, and the inability to get into a comfortable position for my back/neck/head, which means I'm usually in a lot of pain when I am trying to sleep.

10. Each day I take: at least two medicines, sometimes up to five.

11. Regarding alternative treatments I: am open to them, though some are out-of-reach in price. I relied on massage therapy for three months to survive my doctoral exams. And I pray a lot - not quite meditation, but it does help to calm down and not tense up so much.

12. If I had to choose between an invisible illness or visible I would choose: Probably visible, so I wouldn't feel like people thought I was exaggerating or faking half the time.

13. Regarding working and career: It's hard a lot of times, but working is one of the ways (along with playing piano or guitar and singing) that I get to take my mind off of health issues for once. I've gone to class, taught class, graded exams and papers all with full migraine attacks. Teaching is my passion, and I'd do most anything to keep doing it, no matter how I feel.

14. People would be surprised to know: that I have pain of some sort every single day, and don't remember what it's like to wake up without something not working correctly.

15. The hardest thing to accept about my new reality has been: the realization that there is no cure, apart from God's miraculous hand.

16. Something I never thought I could do with my illness that I did was: get through my 2-week marathon of PhD written exams.

17. The commercials about my illness: are ridiculous, and partly the reason why everyone assumes a migraine is just a headache that you can't handle, rather than a complete genetic neurological disorder with multiple stages and more symptoms and triggers than you can imagine, and that can actually get ten times worse if you just throw painkillers at it.

18. Something I really miss doing since I was diagnosed is: the ability to be spontaneous.

19. It was really hard to have to give up: going to do things with friends late at night. I get worse in the evenings.

20. A new hobby I have taken up since my diagnosis is: Hm. I guess guitar is new. And blogging was new at diagnosis, too.

21. If I could have one day of feeling normal again I would: go cycling and hiking in my desert without worrying about the heat, the sun, dehydration, fatigue, or pain, and enjoy being with my friends.

22. My illness has taught me: to be sensitive to other people's pain, especially when they "look fine."

23. Want to know a secret? One thing people say that gets under my skin is: "No word from the doctors yet? Why haven't they fixed it?" I know they mean well, but, in reality, for people with chronic migraine, I'm actually doing extremely well. I don't have to go get rescue meds at the ER every month - in fact, I've only been to the ER for migraine once, and that was when they diagnosed me. I don't have to take really high dosages of our meds like some that I know. I'm not at home on disability- I can still work. I haven't been discriminated against at work, or laid off because of my health. For us, I'm in the top percentile.

24. But I love it when people: give a simple hug. Some days that is more powerful than any words.

25. My favorite motto, scripture, quote that gets me through tough times is: "No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." ~Romans 8:37-39

26. When someone is diagnosed I’d like to tell them: There is hope. You don't have to die inside; you can still enjoy life. Educate yourself as much as possible, and do what you can. You're going to have really awful days, but you'll have bright spots, too. Enjoy every moment you can.

27. Something that has surprised me about living with an illness is: the isolation.

28. The nicest thing someone did for me when I wasn’t feeling well was: sitting with me until I fell asleep when things were awful.

29. I’m involved with Invisible Illness Week because: I have the ability to speak, and many who live with invisible illnesses don't.

30. The fact that you read this list makes me feel: like people will soon truly educate themselves about these kinds of illnesses, and that maybe my friends who are much worse off than I am will receive more compassion and understanding as a result.

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