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.
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.
So, how did I do? http://infinatedays.blogspot.com/2010/09/30-things-about-my-invisible-illness.html
No comments:
Post a Comment