30 Things about CFS/ME

Photo credit: http://www.invisibleillnessweek.com

I'm following closely a social media campaign called Invisible Illness week, and I noticed this questionnaire on the website and thought it might be fun to fill it out. Hope you enjoy and learn a few random facts about me!   

1. The illness I live with is: chronic fatigue syndrome/myalgic encephalomyelitis
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: 2010
4. The biggest adjustment I’ve had to make is: listening to my body instead of pushing it, and cutting back on my academic goals
5. Most people assume: that CFS just means that I'm tired all the time, but it's much more than that
6. The hardest part about mornings are: feeling like a fly stuck in molasses
7. My favorite medical TV show is: hmm... my favorite TV show is Fringe, but I don't really watch medical TV
8. A gadget I couldn’t live without is: my battery powered lantern. I can't use regular lights after dark, but the lantern is enough light to see by, but not enough to hurt my eyes.
9. The hardest part about nights are: knowing other people are usually out in the evenings having fun with friends, but I have to go to sleep early or am too tired to socialize. Plus insomnia. 
10. Each day I take 28 pills & vitamins, soon to be 34. 
11. Regarding alternative treatments: I am open to reasonable suggestions, provided there is a significant reason why I should consider it rather than just a slim reason it maybe could help. 
12. If I had to choose between an invisible illness or visible I would choose: I think I would rather have a visible illness, but this might just be because the grass is always greener on the other side of the fence. Having an invisible illness is annoying because people don't really know how you are doing unless they ask, and sometimes I'm not in the mood to share, and that's hard to explain.
13. Regarding working and career: it is impossible to work the kinds of jobs I have in the past, but I'm hoping that I will improve enough to start doing some things from home right now.
14. People would be surprised to know: that I'm sick at all. 
15. The hardest thing to accept about my new reality has been: changing my plans countless times because I'm not able to work or pursue my academic goals at the rate I thought I would be able to.
16. Something I never thought I could do with my illness that I did was: do a sudoku in less than 10 minutes... but I did one in 9 minutes and 4 seconds! :)
17. The commercials about my illness: don't exist...? But there are a few YouTube videos you can check out, such as this one. 
18. Something I really miss doing since I was diagnosed is: reading extensively. 
19. It was really hard to have to give up: eating sugar, because I have a huge sweet tooth!
20. A new hobby I have taken up since my diagnosis is: resting and sleeping.
21. If I could have one day of feeling normal again I would: wake up early, take a long walk with my dad, get my drivers license, drive to Indiana, and spend the day with my best friend.
22. My illness has taught me: that I am not what I do, can do, or can't do.
23. Want to know a secret? One thing people say that gets under my skin is: "So, chronic fatigue syndrome. What does that mean? Are you just tired all the time?"
24. But I love it when people: know when to listen, and know when to tell me about their life to distract me from what I'm going through.
25. My favorite motto, scripture, quote that gets me through tough times is: heaven... where all the wrong will be right
26. When someone is diagnosed I’d like to tell them: sleep now, or forever hold your peace
27. Something that has surprised me about living with an illness is: how hard it is to get people to understand.
28. The nicest thing someone did for me when I wasn’t feeling well was: mail me a box of gluten free, sugar free cookies and a card!
29. I’m involved with Invisible Illness Week because: I want to raise awareness about CFS/ME and be encouraged by others who have different invisible illnesses.
30. The fact that you read this list makes me feel: loved. Thanks :)