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Monday, September 8, 2014

Invisible Illness Week 2014


September 8-14, 2014 is Invisible Illness Week. This year's campaign is "You may be just one... but you are JUST ONE... of over 100 million." There are some great resources on the website - check it out, here.

30 Things About My Invisible Illness You May Not Know

For the last four years, I've written about 30 Things About My Invisible Illness You May Not Know (201020112012, 2013). 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(es) I live with is: Chronic post-traumatic headache/migraine (intractable, with and without aura), anxietydepressioninsomniairritable bowel syndrome
2. I was diagnosed with it in the year: Chronic migraines - 2008 (after a car accident). The others were diagnosed around 2002.
3. But I had symptoms since: dealt with headaches (and some migraines), anxiety, depression, insomnia, and irritable bowel syndrome since (at least) my 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.
5. Most people assume: that nothing is wrong with me and/or that I can't hurt as much or often as I do.
6. The hardest part about mornings are: getting up without feeling rested, and  not knowing how much pain the day will bring.
7. My favorite medical TV show is: House, Lie to Me, CSI
8. A gadget I couldn’t live without is: my cell phone
9. The hardest part about nights are: getting to (and staying) sleep, especially when the pain is bad.
10. Each day I take __ pills & vitamins: I'm not really sure, but actually fewer than I've taken in quite a while.
11. Regarding alternative treatments I have tried: massage, physical therapy, chiropractic, biofeedback, relaxation, essential oils
12. If I had to choose between an invisible illness or visible I would choose: Neither. There is so much stigma attached to both of them.
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. Since then, working and/or school hasn't even been an option.
14. People would be surprised to know: I am in pain (often severe) every single day... all day, every day.
15. The hardest thing to accept about my new reality has been: that I have changed, and things will never be the same. I have limitations that I have to live within, or pay the (often very high) price.
16. Something I never thought I could do with my illness that I did was: allow myself to be vulnerable, which has allowed me to touch other people's lives in ways that I wouldn't have been able to otherwise. God is showing me that He still has a purpose for me.
17. The commercials about my illness: are very misleading as to what migraine really is and how debilitating it can be. The one about chronic migraine, where the lady is laying on the couch and everything is happening around / without her, is a bit more realistic.
18. Something I really miss doing since I was diagnosed is: This could be a very long list... I miss being able to actively participate in life, though I'm doing the best I can (taking it one step at a time).
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. It's also been really hard to give up going to church (the noises, smells, lights, crowds, etc are just too much for me to deal with).
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 long and difficult 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: accept me as I am, within the limitations of what I can do. 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, being considerate at a restaurant by allowing me to sit facing away from windows.
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 experience with your disease/illness. You are NOT alone - join social media, church, or other support group(s) to help you through the difficult times that you will go through. Be ready for a roller coaster ride of ups and downs.
27. Something that has surprised me about living with an illness is: how strong, yet vulnerable, I can be. Everything I do has to be a conscious decision to use my energy for that specific thing (even seemingly 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 [if I can handle being touched], 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 to raise awareness, increase research, and help correct misinformation. Invisible illnesses are real and affect so many, but are widely misunderstood and stigmatized.
30. The fact that you read this list makes me feel: heard/validated, and hopefully a bit better understood.