Monday, September 13, 2010

Because it is Invisible Illness Week, 30 Things About My Invisible Illness You May Not Know

This is one of those questionnaire things that some of my friends participating in Invisible Illness Week are answering and passing along. In solidarity with those who suffer an Invisible Illness, and in hopes of raising awareness, I've decided to share my answers, too. This is not a "fun" post, but one in which I am brutally honest about my experiences and feelings surrounding being chronically ill. Even if you know me very well, I doubt you know much of this stuff, because I don't normally share on this level. But today I am, so here goes. You've been warned... ; )


1. The illness I live with is: Chronic (Daily) Migraine

2. I was diagnosed with it in the year: 1975, when I was five, with Migraines. Confirmed in 1980 and specified as Classic Migraine without Aura. Diagnosed with Chronic (Daily) Migraine in 2004.

3. But I had symptoms since: 1975

4. The biggest adjustment I’ve had to make is: not having been able to work for the past few years.

5. Most people assume: that, because I maintain a positive attitude, I am far more "OK" than I really am. 

6. The hardest part about mornings is: those on which I wake in agonizing pain. (The migraines often start while I am asleep.)

7. My favorite medical TV show is: not on the air, apparently, because I do not have a favorite medical TV show. Wait, is Celebrity Rehab with Dr. Drew considered a "medical show?"

8. A gadget I couldn’t live without is: my iPhone. When I'm most home-bound, the internet is my lifeline to the outside world. The iPhone allows me to reach out, but I don't have to sit up to do it. The iPhone also makes it easier for me to track my illness/treatment, using various apps.

9. The hardest part about nights are: not being able to get comfortable enough to rest/sleep during an attack.

10. Each day I take __ pills & vitamins. (No comments, please.) Approximately 4-8 pills. Up to 3 injections.

11. Regarding alternative treatments I: am open to anything that makes sense, given my symptoms/patterns/triggers/etc., and have explored and/or tried almost every reasonable treatment option that's been suggested to me.

12. If I had to choose between an invisible illness or visible I would choose: a visible illness, in a heartbeat. I've found that most people who have never experienced a severe migraine have no idea what it is like. Because the extent of the pain I experience is not accurately depicted on the outside, it can be very isolating to endure it alone, on the inside.

13. Regarding working and career: I miss working/being a productive member of society/a full partner in my marriage far more than I could articulate here. No words.

14. People would be surprised to know: the degree to which my illness has devastated me, as well as the variety of ways it has done so. Sometimes I feel like Humpty Dumpty, looking for pieces of my old self anywhere I can think to look.

15. The hardest thing to accept about my new reality has been: my profound limitations, and the fact that I cannot expect/depend on my body to comply with my wishes, plans, or goals. And that sometimes we just flat-out don't get what we want. Period.

16. Something I never thought I could do with my illness that I did was: taking the initiative to start something that I thought was much too big for me to handle, yet too important to not try. I tried, and succeeded, and it's truly ended up being one of my proudest accomplishments. (But it's private, so no questions, please.)

17. The commercials about my illness: make me think violent thoughts about the advertising/marketing professionals responsible for putting them on the air. Particularly, whoever came up with the idea of putting Excedrin, Advil, or anything else into a different box with the word "migraine" on it. Hi, I can read. And it says here that it's the same medicine as the one without "migraine" in the name. So thanks so much. For the new box. That contains the old medicine. That didn't work under that name, either. [SMACK!]

18. Something I really miss doing since I was diagnosed is: Working. Thriving. Making money. Surpassing expectations. Being "the best" at something. My swagger. (But it IS coming back, bit by bit.)

19. It was really hard to have to give up: work, my income, feeling capable/talented, a sense of achievement, and eating lots of fresh bread. =)

20. A new hobby I have taken up since my diagnosis is: crocheting. I taught myself while in the hospital a couple of years ago, and I enjoy it.

21. If I could have one day of feeling normal again I would: accomplish something-- anything-- that I could be deeply proud of, no matter how big or small the task. I wish I could go back and work a day in my old Origins store with everybody who was there at that time (during the holidays, even), because I was good at it, and had such fun doing it. It may have been an hourly job with retail hours, and considered "a waste of my potential" by some, but the *feeling* I got doing that job well was invaluable, and I'd give anything to have that back. (Not the store-- the FEELING.) Helping people feel better about how they looked truly enriched my life.

22. My illness has taught me: that thinking I would be able to "push through" my migraines for my entire life was an unreasonable expectation. I was lucky to have been able to do it for 31 years before my body finally caved. I admit that I sometimes hate myself for not appreciating my own strength in having been able to "function" for that long, but choosing, instead, to be angry with/disappointed in my body for its having failed me, and, thus, dismissing all the victories that came before. I've learned that I should be kinder to myself, and it's often very difficult, as I am my own worst critic. When conscious of it, I make the choice to love and be grateful for my body, rather than undermining its efforts with negativity and resentments.

23. Want to know a secret? One thing people say that gets under my skin is: anything that feels like pity to me. Compassion is a wonderful thing, and I cherish it, but if I hear how "sorry" someone is for me more than, say, twice in one conversation, I start to have violent thoughts about whomever is saying it to me. And they get more violent with every instance it is said. Seriously. If you do feel sorry for me, I would just rather not know.

24. BUT I love it when people: follow my lead when I try to change the subject from my illness in conversations. I appreciate people caring and wanting to stay updated on my progress, but it really is one of my least favorite things to talk about in the whole wide world, so if I do try to change the subject, I'd love it if you'd let me. [You can bring it up! Just follow my lead, and move on when I do, k? K.]

25. My favorite motto, scripture, quote that gets me through tough times is: "this is only right now." and "I've survived worse pain than this. I can do it again." And a photo I have of a precious child, my youngest BFF, whose look says to me, "You can do it, Aunt Kimmy!" And she's right. I can, and I do. So far, every time.

26. When someone is diagnosed I’d like to tell them: that, if pursuing an answer from traditional medicine, it is imperative that you be evaluated/diagnosed/treated by a Neurologist who specializes in Migraine, because there is still much too little known about the disease yet. Anything short of a migraine specialist is a waste of time, and a disservice to you. Think about it-- it's a BRAIN DISEASE, so you want to make sure you're being treated by someone with a full grasp of what your treatment actually DOES to your brain. 'Cause it's pretty important not to mess it up. I feel compelled to also say here that if your child starts to experience frequent headaches, the same rule applies-- take them to a Pediatric Neurologist who specializes in migraine. I implore you to never stop looking for answers until your child has relief of some kind. "He/she'll outgrow them" is not an answer. Keep looking. Read everything you can. Be your child's advocate. Do not stop.

27. Something that has surprised me about living with an illness is: the depth of the trauma of failed treatments. I realize now that hope is sometimes the most frightening thing in my world, because the disappointments over the countless things I've tried that didn't work have been so incredibly painful. I can hardly give it much thought without some part of me wishing I could just immediately cease to exist. Poof! Over. [Whew. Yuck. Next question.]

28. The nicest thing someone did for me when I wasn’t feeling well was: When I was little, my mom was great at "talking me down outta the tree" when I'd become hysterical from the pain. I still try to hear her soothing words when I have trouble settling down from the anxiety that excruciating pain can cause. She'd rub my back and  say stuff like "It's OK… deep breaths… be still, now… I'm right here… Let's think of the beach… You're lying on the picnic blanket under the umbrella… You can hear the waves, and feel the breeze… You can do this… You can do this… " She was also really good at guiding me through a body scan meditation, which was/still is especially good when I felt the most uncomfortable in my skin. Sometimes, I have to be coaxed into relaxing, and she was so kind to always make such an effort to soothe me, when there was really almost nothing that anyone could do to make me feel better. She found what she *could* do for me, and did it without hesitation. My dad did, too. He has always rubbed my neck when my head hurts, and it really helps. His anti-headache neck rubs are The Ones By Which All Others Are Judged.

29. I’m involved with Invisible Illness Week because: my Invisible Illness has impacted my life in countless ways, but I tend to keep pretty quiet about it, because it's depressing! But if my experiences help anyone else out there who suffers, I'm happy to share it. I went decades without knowing others who had poor health, and I realize now how lonely that felt.

30. The fact that you read this list makes me feel: like somebody out there wants to understand me/my experience a little bit better. I am grateful if any words on this page get read by anybody but me, so if you can see this, thanks, whoever you are. =)


Click to learn about Invisible Illness Week, and consider participating in "the note" project!