30 Things About My Invisible Illness You May Not Know


1. The illness I live with is: Chronic Fatigue Syndrome
2. I was diagnosed with it in the year: 2013
3. But I had symptoms since: 2003
4. The biggest adjustment I’ve had to make is: Everything!  Coping with frustration at not being able to do the things I want to do
5. Most people assume: Fatigue is the only symptom but there are lots actually.  I once read a quote: Calling it Chronic Fatigue Syndrome is like calling Pneumonia, Chronic Cough Syndrome.  The name doesn’t really fit the illness but it’s more descriptive than the other name, M.E.
6. The hardest part about mornings are: Making breakfast is exhausting.
7. My favorite medical TV show is: ER
8. A gadget I couldn’t live without is: my picky up stick, it helps me pick things up from the floor without bending down or over stretching to get things
9. The hardest part about nights are:  Nightmares
10. Each day I take _18_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: am skeptical but willing to try some things
12. If I had to choose between an invisible illness or visible I would choose: Visible!  It would be so much easier if people could see that I am actually ill!
13. Regarding working and career: I had to give up working outside the home and now work for myself at home which means I can take a nap when I want but also is stressful trying to actually make any money
14. People would be surprised to know: Doctors still don’t know what causes CFS
15. The hardest thing to accept about my new reality has been: not seeing people, I’m home alone and only see Tim for days on end sometimes.  I get very lonely.
16. Something I never thought I could do with my illness that I did was: Can’t think of anything for this question!
17. The commercials about my illness: There aren’t any!
18. Something I really miss doing since I was diagnosed is: Riding my bike and going for walks
19. It was really hard to have to give up: Going to work
20. A new hobby I have taken up since my diagnosis is: Playing Sudoku
21. If I could have one day of feeling normal again I would: Go out for the day – first I would go on the ministry to talk to people about the Bible then I would have lunch and go out for the afternoon to a National Trust property and then I’d go out for dinner with friends.
22. My illness has taught me: Patience and to take life more slowly
23. Want to know a secret? One thing people say that gets under my skin is: I know someone who has CFS and they can do xyz… I’m glad for them that they can do so much more than me, but I can’t do those things!  It just makes me feel guilty, like people think I am pretending to be more ill than I am.
24. But I love it when people: send me a text or pop in to see me
25. My favorite motto, scripture, quote that gets me through tough times is: Isaiah 41:10, 13 I love the thought that God is holding my right hand and says: “Do not be afraid, for I am with you.”
26. When someone is diagnosed I’d like to tell them: It feels like a life sentence but it isn’t and if you learn to pace yourself, you will be able to do more than you can.
27. Something that has surprised me about living with an illness is: How lonely life can be.
28. The nicest thing someone did for me when I wasn’t feeling well was: being sympathetic and kind and helping me to get water and sit down.
29. I’m involved with Invisible Illness Week because: people who don’t have an illness find it hard to imagine what it is like, which is totally understandable, but we need to help them understand it a bit better
30. The fact that you read this list makes me feel: really grateful and pleased that you spent time to read this

It was Invisible Illness week last week and it made me want to fill out this questionnaire.  I’m a little late, but glad to take part none the less.  If you want to do your own version, you can find it here: http://invisibleillnessweek.com/submit-article/30-things-meme/


3 thoughts on “30 Things About My Invisible Illness You May Not Know

  1. This is so spot on! Particularly #23 that drives me nuts! And #18, I used to love to run and go for walks, what I wouldn’t give to do that again!

      • It makes a huge difference! I could never get through it alone. I’m okay, my sleep has been horrible and you know how that just makes everything worse.

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