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Wednesday, September 18, 2013

30 Things About My Invisible Illness You May Not Know

Last week was Invisible Illness Awareness Week. I participated in a few of the chats, since that was easily done from the sofa, where I spent the majority of my week... but, I mostly missed being more actively involved. The need for awareness marches on, though, so on we go. This year, the campaign was focused on "I choose to __."

I choose to...
...not let my illness define me.
...find joy in the little things.
...try again tomorrow.

For the last three years, I've written about 30 Things About My Invisible Illness You May Not Know (201020112012). 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
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. 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: plan the wedding of my dreams, with the man of my dreams.
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.
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 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: 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 experience with 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. 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 and get more awareness, research, 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 makes 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.

4 comments:

  1. Hello Jamie, I wanted to check up on you and see how you have been doing these days. I don't know if you remember but I had told you before of the acupuncture treatment that I was doing for my migraines. I've had about 60 treatments so far and I can't even begin to tell you the improvements I've been having. I feel like a new person! I'm still not completely done but even still my migraines are not nearly as frequent or severe. There are times when I just take an advil and they go away. I'm telling you this not for myself but for you. Please pray for a way that you may receive this treatment as well. He is truly the "Migraine Whisperer" and has helped HUNDREDS of people with the most severe migraines. I would gladly help you any way I can but I just know that this treatment can help you too. Please just ask God for his guidance. God bless. Margaret

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  2. Margaret, I'm so glad that the acupuncture is helping you so much. Thank you for sharing. Do you mind telling me where / who does it for you? I don't know how I would even begin to find a good quality acupuncturist, you know? I hope it continues to provide relief for you... what a blessing!

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  3. Hi Jamie, here is the link for the clinic and also 1 of several articles that were written about him. He has over a 90% success rate which is incredible. The problem is that he is the only one who can do this specific method. He was taught in Sri Lanka and was the only chosen one by the acupuncture guru there to learn this method...the guru has since passed away. I know it seems so far fetched....as I'm typing it seems that way for me as well BUT it works...it really, really does. Here are the links and you could do some research on your own...Good Luck!!
    http://www.migraineclinic.ca/
    http://www.chatelaine.com/health/wellness/migraine-therapy/

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    1. Margaret, thank you for the links. I haven't had a chance to take a look at them yet, as I've been out of town for a while. But, I'll definitely check things out! I appreciate it.

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