1. The illness I live with is:
Arthritis, chronic tendinitis caused by hypermobility, and fibromyalgia
2. I was diagnosed with it in the year:
2009
3. But I had symptoms since:
2001
4. The biggest adjustment I’ve had to make is:
Asking for help.
5. Most people assume:
I wouldn’t presume to know what others assume.
6. The hardest part about mornings are:
Waking up and getting out of bed.
7. My favorite medical TV show is:
House, not that it’s accurate, but it’s amusing.
8. A gadget I couldn’t live without is:
My laptop.
9. The hardest part about nights are:
The insomnia… The lying awake begging to fall asleep.
10. Each day I take __ pills & vitamins.
Somewhere between 1 and 12 or so.
11. Regarding alternative treatments I:
Love my chiropractor, but wish he was covered by my insurance.
12. If I had to choose between an invisible illness or visible I would choose:
I don’t have to choose. Some days I am visible (crutches/rollator) and some days I am invisible.
13. Regarding working and career:
I’m a full time and then some student also doing part-time student teaching and have recently been offered two student research assistant positions! I’m accepting both and will make it through because school is a physically passive venture, as is being a research assistant. The student teaching is hard, though, and I wonder how I’ll ever manage to become a full time teacher.
14. People would be surprised to know:
How little I can actually do for myself and my home.
15. The hardest thing to accept about my new reality has been:
All of the changes that I have to make in my life. That this me is not the same me I was.
16. Something I never thought I could do with my illness that I did was:
Fly to Florida over the summer for a conference.
17. The commercials about my illness:
Are dumb. A person with true fibromyalgia, even on meds, could not stand all day at a bakery. Meds do not suddenly make you a typical person. They just help you (hopefully) manage most of the symptoms most of the time.
18. Something I really miss doing since I was diagnosed is:
Going to any social event, really. And ballroom dancing… and sleeping. I miss sleeping…
19. It was really hard to have to give up:
My hobbies of dancing and playing the piano, as well as cross-stitch…
20. A hobby I have taken up since my diagnosis is:
Knitting. It keeps my hands busy, and is easier on them than cross-stitch.
21. If I could have one day of feeling normal again I would:
I don’t know, and I don’t really want to think about it, because it would just remind me more of how much I’ve lost.
22. My illness has taught me:
How to ask for help. that I’m not perfect and don’t have to be.
23. Want to know a secret? One thing people say that gets under my skin is:
When they compare what I’m going through to their badly sprained ankle, etc. Please don’t think you know what I’m going through. You don’t.
24. But I love it when people:
Offer to help and do simple things like hold open a door.
25. My favorite motto, scripture, quote that gets me through tough times is:
“The Son of God suffered unto death, not that men might not suffer, but that their sufferings might be like His.” –George MacDonald.
“And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infimities.”
Alma 7:12 (from the Book of Mormon)
Christ has felt my pain and my sorrow and knows what I am going through, and he is there for me, to comfort me and lift me up.
26. When someone is diagnosed I’d like to tell them:
You’re not alone. There is a whole community of individuals with invisible illnesses out there, as well as people who truly love you and care for you. Even on the days when you feel alone, you’re not, because Christ is still there for you.
27. Something that has surprised me about living with an illness is:
How many other people live with chronic illnesses. It wasn’t something I was really aware of until I became a person with a chronic illness.
28. The nicest thing someone did for me when I wasn’t feeling well was:
I am so thankful for the women from my church who have brought in meals and cleaned my house for me.
29. I’m involved with Invisible Illness Week because:
The world needs to be aware of how many people suffer in silence. They need help and understanding.
30. The fact that you read this list makes me feel:
Thankful. Because maybe now you’re a little more aware, and can be more understanding of others you meet with invisible illnesses.
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