Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
1. The illness I live with is:
Multiple Sclerosis
2. I was diagnosed with it in the year:
1996
3. But I had symptoms since:
1995
4. The biggest adjustments I’ve had to make is:
the fatigue, the loss of complete independence. the necessity of energy conservation.
5. Most people assume:
that I am “well” in between relapses
6. The hardest part about mornings are:
the opening my eyes bit, never feeling like i woke up.
7. My favorite medical TV show is:
i hate them all
8. A gadget I couldn’t live without is:
the car
9. The hardest part about nights are:
insomnia
10. Each day I take __ pills; vitamins:
a largely varriable amount of
11. Regarding alternative treatments I:
judge my practitioner very carefully, currently i have an acupuncturist (since 02) and a psychotherapist (since 07) but have recently ‘dumped’ several others.
12. If I had to choose between an invisible illness or visible I would choose:
visible, hands down!
13. Regarding working and career:
have had to give up the prospect, but have enough denial left to occasionally entertain the thought of what to try next, usually end up discouraged, then give up.
14. People would be surprised to know:
well if i haven’t tried to tell you yet, then i’m probably not going to. but you’d probably be surprised how fatigue is really nothing like being tired.
15. The hardest thing to accept about my new reality has been:
that once something is gone it’s gone. it’s not coming back. and you don’t realise that it’s going until after it has happened.
16. Something I never thought I could do with my illness that I did was:
on the contrary, i always thought I would do a lot more than I have.
17. The commercials about my illness:
make me feel angry, objectified, pitied and patronised.
18. Something I really miss doing since I was diagnosed is:
hiking, dancing
19. It was really hard to have to give up:
hiking, working, travelling, dancing, stage things… didn’t we already have this question?
20. A new hobby I have taken up since my diagnosis is:
well, i took up cross stitch once, but then i lost too much eyesight to do it anymore (besides getting bored). does hammered dulcimer count as a hobby?
21. If I could have one day of feeling normal again I would:
hike into the Grand Canyon
22. My illness has taught me:
things I’d rather not know.
23. One thing people say that gets under my skin is:
“But you’re so young!” oh wait, no they don’t say that one anymore, cause I’m not. So how bout, “But you look so normal, I would have never known!”
24. But I love it when people:
empathise rather than pity.
25. My favorite motto, scripture, quote that gets me through tough times is:
The Letter to the Church in Philadelphia Rev 3: 7-13 (personal reasons)
26. When someone is diagnosed I’d like to tell them:
don’t waste your life waiting/looking for ‘the cure’. don’t fight your body/illness, you’ll only be fighting yourself. try to work with and accept it.
27. Something that has surprised me about living with an illness is:
how many people have huge misconceptions.
28. The nicest thing someone did for me when I wasn’t feeling well was:
bring me banoffee pie in hospital and then washed my very long hair in the sink for me when I couldn’t move and the hospital nurses hadn’t done it for me for two weeks. and also bossing the ward sister around when I had been left alone in my own sick because they were too busy to bother with me. (thanks E, I’ll never forget it.)
29. I’m involved with Invisible Illness Week because:
I have an Invisible illness
30. The fact that you read this list makes me feel:
I’ll come back to that question if I ever find out that somebody has actually read it.
