Last week marked "Invisible Illness Awareness" week. Here is my contribution to the information bloggers around the world have been sharing:
1. The illness I live with is:
Relapsing Polychondritis,
Meniere's Disease, fibromyalgia,
IBS,
Migraines, undiagnosed Central Nervous System disorder (tremors and muscle spasms)
2. I was diagnosed with it in the year: RP and Meniere's (2000); fibromyalgia and IBS (2009)
3. But I had symptoms since: Maybe childhood? I have had ear and sinus problems since I was very young. Obvious RP symptoms began mid-1999.
4. The biggest adjustment I’ve had to make is: Not being able to participate in my children's activities as much as I would like. I try to make it a point to find fun, low-key things we can do together to make up for it.
5. Most people assume: I think some people assume that when you take a bunch of medications and go to the doctor frequently, that the only option is to get better. Unfortunately, not true. The symptoms of RP and Meniere's can perseverate, even with treatment.
6. The hardest part about mornings are: Not knowing how I will feel each day. Every day is a crap shoot, health-wise, regardless of any plans I have made.
7. My favorite medical TV show is: House! I find it fascinating.
9. The hardest part about nights is: Pain, racing thoughts, night sweats, and medication side effects often keep me from sleeping.
10. Each day I take __ pills and vitamins: 12 pills; 7 vitamins and supplements (all doctor recommended); PRN prescriptions for pain, dizziness, and muscle spasms
11. Regarding alternative treatments: The only one I have tried is massage- I used to love it, but now find it painful. Cost prohibits me from trying other treatments.
12. If I had to choose between an invisible illness or visible I would choose: Neither! I don't see how one is "better" than the other.
13. Regarding working and career: I have had periods when I could not work. My doctor told me to stop working again last month. I am an educated and driven person, so this is so hard! And financial difficulties from not working just add to stress.
14. People would be surprised to know: Some days something as simple as taking a shower can totally wear me out.
15. The hardest thing to accept about my new reality has been: Being "forced" to quit working.
16. Something I never thought I could do with my illness that I did was: Get my Master's degree.
17. The commercials about my illness: Well, RP and Meniere's are very rare, so there aren't any commercials!
18. Something I really miss doing since I was diagnosed is: Going to my monthly scrapbook get-togethers. I usually don't have the stamina for a 6 hour crop, and transportation is an issue (see #19).
19. It was really hard to have to give up: Driving. I am dizzy most of the time, so this is not a safe activity! The loss of independence can be very depressing.
20. A new hobby I have taken up since my diagnosis is: I wouldn't say I have any new hobbies- I have been a scrapbooker and blogger for a while now. But I certainly have more time to devote to them now!
21. If I could have one day of feeling normal again I would: Do something active- go camping with my family, take a hike, try Zumba.
22. My illness has taught me: Asking for help is ok, and not a sign of weakness.
23. Want to know a secret? One thing people say that gets under my skin is: "Just hang in there". Really? What do you think I'm doing?? I know people mean well and usually just don't know what to say, but...this one is really annoying to me, especially when a doctor says it!
24. But I love it when people: Just help me without me asking. I have a group of close friends and co-workers who regularly drop off meals, send me restaurant gift cards, or do other random things that really help.
25. My favorite motto, scripture, quote that gets me through tough times is: "That which does not kill me makes me stronger". I know I am going through this for a reason, and that somehow I am a better person for it.
26. When someone is diagnosed I’d like to tell them: Read everything you can, join a
support group, and be prepared to advocate for yourself.
27. Something that has surprised me about living with an illness is: I have made new friends
because of my illness, not just in spite of it.
28. The nicest thing someone did for me when I wasn’t feeling well was: Buy 2 air conditioners for me and my family during the worst of the summer heat. A cool house helped my fatigue and overall well-being!
29. I’m involved with Invisible Illness Week because: There is strength in numbers.
30. The fact that you read this list makes me feel: Empowered and hopeful.
The Magicians by Lev Grossman
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