Wednesday, September 14, 2011

30 Things About My Invisible Illness You May Not Know

Last year, I wrote about 30 Things About My Invisible Illness You May Not Know. I'm completing it again this year, for Invisible Illness Week. Some of my answers are the same or similar. But, I think it can be good to review how you've answered these questions in the past, so you can see where you were and how far you've come.

1. The illness I live with is: Chronic post-traumatic headache/migraine (intractable, with aura)
2. I was diagnosed with it in the year: 2008 - after a car accident
3. But I had symptoms since: some headaches throughout teenage years
4. The biggest adjustment I've had to make is: not always being able to take care of myself / depending on other people so much. And, giving up my perfectionist tendencies and accept "good enough" because that's all I am often able to do.
5. Most people assume: that nothing is wrong with me / that I'm fine
6. The hardest part about mornings are: getting up, not knowing how much pain the day will bring
7. My favorite medical TV show is: House, CSI (Miami, New York)
8. A gadget I couldn’t live without is: my computer, and cell phone (especially my calendar)
9. The hardest part about nights are: getting to and staying asleep. I often wake up because of the pain
10. Each day I take __ pills & vitamins: I plead the fifth
11. Regarding alternative treatments I have tried: massage, physical therapy, chiropractic
12. If I had to choose between an invisible illness or visible I would choose: I'm not sure. At least with an invisible illness, I don't always have people looking at me strangely or asking me what's wrong/what happened.
13. Regarding working and career: I have been unable to work since the accident in 2008. I tried to return to graduate school for a year, but ended up taking a leave of absence and then made the difficult decision not to return.
14. People would be surprised to know: I am in pain (often severe) every single day
15. The hardest thing to accept about my new reality has been: that I have changed and that I have limitations - I can't "do it all" anymore.
16. Something I never thought I could do with my illness that I did was: plan the wedding of my dreams
17. The commercials about my illness: are very misleading as to what migraine really is and how debilitating it can be.
18. Something I really miss doing since I was diagnosed is: This could be a very long list... I miss being able to live life without having to really think about the consequences of everything I eat, do, etc...
19. It was really hard to have to give up: who I was before the accident... I still haven't completely let go of that yet
20. A new hobby I have taken up since my diagnosis is: blogging
21. If I could have one day of feeling normal again I would: have no idea what to do with myself (assuming "normal" is feeling "good," not what my "normal" has become)! I don't even know what life without pain is anymore.
22. My illness has taught me: to recognize the strength that I DO have. It is teaching me to TRUST God more... but it is definitely a process.
23. Want to know a secret? One thing people say that gets under my skin is: Migraines are just bad headaches; take some pills and keep going / move on, it can't be that bad
24. But I love it when people: Show that they care. Even just little things like: being aware of how bright a room is, asking if the TV/radio is too loud, rubbing my neck/shoulders/head, treating me like a person rather than the disease/illness, being considerate at a restaurant by allowing me to sit facing away from windows (so the glare shining off of cars doesn't worsen my pain)
25. My favorite motto, scripture, quote that gets me through tough times is:
  • "Be still, and know that I am God" (Psalm 46:10)
  • "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything" (James 1:2-4)
  • "You will seek me and find me when you seek me with your whole heart" (Jeremiah 29:13)
  • "Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight" (Proverbs 3:5-6)
26. When someone is diagnosed I'd like to tell them: keep yourself informed - research things online, ask your doctor questions, do your best to understand and articulate your disease/illness. Don't feel like you're alone - join blogging, church, or other support group(s) to help you through the difficult times that you will go through.
27. Something that has surprised me about living with an illness is: how strong I can be, and how many people misunderstand invisible illnesses so much that even their well-intentioned words and actions can be hurtful. Also, how much so many of us take for granted the freedom of just doing/being. Before my accident, I could choose what to do, without having to seriously consider each little thing as being a potential source of increased pain. Now, everything I do has to be a conscious decision to use my energy for that specific thing (even basic things, like taking a shower).
28. The nicest thing someone did for me when I wasn't feeling well was: take care of me... When I have a bad migraine, my husband does everything he can to take care of me (feeds me, makes sure I take my medicine, massage my head/neck/shoulders/back/feet, make sure I'm in a dark room and am as comfortable as I can be, and anything else that I need).
29. I’m involved with Invisible Illness Week because: I feel that we need to speak out and get more awareness and understanding out into the public view about invisible illnesses - they are real and often difficult to bear.
30. The fact that you read this list make me feel: heard/validated, and hopefully a bit better understood. It gives me hope that invisible illnesses can be better understood, if only people will listen.

1 comment:

  1. I hear ya sister!

    Oh and I cannot stand: 1. When I see commercials for Migraine...they are so ridiculous and down play the severity of the disease and 2. When people tell you to just take some Tylenol for your headache! Those that are ignorant to the debilitating effects of this neurological disease should just keep their mouths shut!


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