Monday, September 29, 2014

30 Things Meme

I did this one back when I first got sick.  I'm going to do it again now, five years later, without looking at my old post.  I'm curious how many of my answers have changed.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic Fatigue Syndrome/ME, Fibromyalgia, Osteoarthritis, Fluroquinolone Poisoning
2. I was diagnosed with it in the year: CFS/ME & Fibro were diagnosed in 2011, Osteo around 1998
3. But I had symptoms since: Fibro I can trace back about 25 years, CFS/ME was sudden onset in 2010 and the arthritis built up over fifteen years after a fall down the stairs in 1990.
4. The biggest adjustment I’ve had to make is: Not having the energy or brain power to do ANYTHING
5. Most people assume: I'm just tired
6. The hardest part about mornings are: Knowing that I only have 2-3 hours to get everything done before I run out of energy for the day.
7. My favorite medical TV show is: ER
8. A gadget I couldn’t live without is: Crockpot
9. The hardest part about nights are: Being nocturnal so most of my waking hours are during the dark.
10. Each day I take __ pills & vitamins. (No comments, please) I am supposed to take 25 pills a day, on a good day I manage 16 but most days I only get down 8-10.  I'm also using three spray supplements and an IV infusion twice a month.
11. Regarding alternative treatments I: have had some success with acupuncture, massage and chiropractic.  I've had to stop massage and acupuncture due to cost.
12. If I had to choose between an invisible illness or visible I would choose: VISIBLE
13. Regarding working and career: What career?  I'm so far behind in my field at this point I doubt I could get hired back.  If I were well enough I might be able to work again, but at my age I doubt I would get anywhere career wise.  My only hope would be to go and get a PhD.
14. People would be surprised to know:  I have HUGE trouble reading books and articles.  I can only read in short spurts and even if I manage to comprehend what I read it is often forgotten shortly afterwards.
15. The hardest thing to accept about my new reality has been: the lack of support from family and the loss of friends
16. Something I never thought I could do with my illness that I did was: manage to get through the heaps of paperwork required for disability.
17. The commercials about my illness:  There aren't any for CFS/ME.  The drugs for fibro are useless.
18. Something I really miss doing since I was diagnosed is: ice skating
19. It was really hard to have to give up: ice skating
20. A new hobby I have taken up since my diagnosis is: I just do my old one, watching movies.
21. If I could have one day of feeling normal again I would: Travel
22. My illness has taught me: the true meaning of the Buddhist idea of impermanence and living in the moment
23. Want to know a secret? One thing people say that gets under my skin is: "Oh I get tired all the time too."
24. But I love it when people: Bring me food (this has only happened once)
25. My favorite motto, scripture, quote that gets me through tough times is: "This too shall pass."
26. When someone is diagnosed I’d like to tell them:  "Ask me anything.  I will try to help."
27. Something that has surprised me about living with an illness is:  I can enjoy living the quiet life.
28. The nicest thing someone did for me when I wasn’t feeling well was:  Bring me food.
29. I’m involved with Invisible Illness Week because:  Others need to know that people are suffering and that CFS/ME is real and can strike down anyone at any time.
30. The fact that you read this list makes me feel: content.