I should explain that my part in this community doesn't exist. It's even of less than the anaphylaxis support groups, and we all know the hall of shame I walk every day for that one. I'm guessing that by November, I should have some energy to dive in. I rely on the support of others to get me through each week, and my navigation skills change depending on how well I am feeling. I have been out of my house 5 days in a row. I can't even tell you what this feels like. Oh...wait. I can. I was passing by someone in the grocery store and finally had a clear description of how Laundry detergent affects me.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Multiple Chemical Sensitivity.
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: 2009
4. The biggest adjustment I’ve had to make is: Searching for affordable organic personal care products that work.
5. Most people assume: These are allergies.
6. The hardest part about mornings are: Get moving even though I haven't fully recovered from the day before. Also, people are their 'cleanest' in the mornings ie. clean clothes. hair products, just sprayed perfume.
7. My favorite medical TV show is: I don't know about favourite, but I follow Grey's Anatomy.
8. A gadget I couldn’t live without is: My computer.
9. The hardest part about nights are: Falling asleep. My mind constantly races, worrying about the exposures I will have while getting groceries, visiting Sebastian's school etc.
10. Each day I take __ pills and vitamins. Four.
11. Regarding alternative treatments I: I am absolutely open to all/any alternative treatment. Unfortunately I am absolutely broke.
12. If I had to choose between an invisible illness or visible I would choose: No pondering this one. Visible.
13. Regarding working and career: The last time I worked, I got out of my car and approached the building where the janitor was cleaning with something equivalent to chlorine and bleach. I turned around, and drove home. No explanation.
14. People would be surprised to know: I smile.
15. The hardest thing to accept about my new reality has been: I really have no control over how I will feel each day. I might think things will be great, and then open my window, and and get a whiff of whatever is blowing out of the neighbor's dryer vent.
16. Something I never thought I could do with my illness that I did was: Sell lemonade with my children (4 hours).
17. The commercials about my illness: None as yet.
18. Something I really miss doing since I was diagnosed is: Standing next to people, driving at night, feeling sexy.
19. It was really hard to have to give up: Make-up.
20. A new hobby I have taken up since my diagnosis is: Isolation. Free membership, and I am the president of this club.
21. If I could have one day of feeling normal again I would: Please don't make me imagine such a day. It is too painful.
22. My illness has taught me: So much. I am now a conscious tenant on this planet, paying close attention to what enters my body.
23. One thing people say that gets under my skin is: Just one? How about two. Getting a phone call to let me know that 'Tide' is on sale. Reminding me that my hair is brittle/dry and looks awful, as if I was trying to go for this look.
24. But I love it when people: Make an effort to educate themselves.
25. My favorite motto, scripture, quote that gets me through tough times is: "Keep Calm and Carry On."
26. When someone is diagnosed I’d like to tell them: I wouldn't say anything. This group of sufferer's is a strange one.
27. Something that has surprised me about living with an illness is: No surprises.
28. The nicest thing someone did for me when I wasn’t feeling well was: In terms of going chemical free? No one yet. Sally and Jaime have offered to help though.
29. I’m involved with Invisible Illness Week because: I'm actually not involved, I'm just filling out this questionnaire, and might post an update on Face book.
30. The fact that you read this list makes me feel: Really, really good.
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