1. The illness I live with is: I've had many different diagnoses (RSI, carpal tunnel syndrome, tendonitis, etc.); the bottom line is I have chronic pain in my hands, arms, neck, and back that is made worse by things like computer use and other repetitive hand and arm work. I also am effected by Seasonal Affective Disorder (SAD), though I don't think it's a disorder. I identity as a highly sensitive person which means I am easily overstimulated, so I have to take really good care of myself to prevent intense physical and emotional symptoms of stress like depression, anxiety, GI problems, and pain. (Being an HSP is an asset, too.) My left eye is pretty much blind.
2. I was diagnosed with it in the year: RSI: 2002, SAD: 1999, HSP: 1999, Left eye: 3rd grade
3. But I had symptoms since: RSI: 1999, SAD: adolescence, maybe earlier. HSP: all my life, Left eye: probably all my life... I don't really know. I didn't use to ever use that eye.
4. The biggest adjustment I’ve had to make is: Learning to ask for help. Having patience with my body's needs.
5. Most people assume: I'm young and strong, I guess.
6. The hardest part about mornings are: getting going when it's cloudy or dark.
7. My favorite medical TV show is: House, MD
8. A gadget I couldn’t live without is: er... RSI: my scooter. It carries my groceries so I don't have to. Yay! SAD: dawn simulator! And the hamster wheel at the gym. (aka cardio machines) Eye: glasses or contact lenses
9. The hardest part about nights are: insomnia. sometimes it's due to pain, sometimes over-stimulation, sometimes it is just mysteriously present and won't go away!
10. Each day I take 0-8 types of pills & vitamins. (No comments, please)
11. Regarding alternative treatments: I prefer them for my RSI and SAD. I believe that western medicine is much more effective for acute problems than chronic ones.
12. If I had to choose between an invisible illness or visible I would choose: WTF?
13. Regarding working and career: I've had to make major changes to my work habits. I've chosen a life path that works with my needs for part time work, flexible hours, and less time behind a desk.
14. People would be surprised to know: I dunno. You tell me. Maybe that I am disabled at all?
15. The hardest thing to accept about my new reality has been: There are some things I may never be able to heal enough to do. There are some accommodations I may have to make for myself for my whole life.
16. Something I never thought I could do with my illness that I did was: drive.
17. The commercials about my illness: I don't watch TV.
18. Something I really miss doing since I became disabled is: helping and pleasing others through things like massage that require a lot of my upper body. I sometimes miss crocheting, hand sewing, and other crafts that require small movements. I still draw and write even though it hurts sometimes.
19. It was really hard to have to give up: being able to use my hands without thinking about whether they'll respond or whether my actions will be painful.
20. A new hobby I have taken up since my diagnosis is: It's been 10 years or more. There have been many hobbies that have come and gone during that time.
21. If I could have one day of feeling normal again I would: Hehe. Do things I really enjoy doing that I can't do for long without pain now.
22. My illness has taught me: that my mind, body, and emotions are not separate. I must check in with all the parts of me to find out how to address difficulties. If I take care of my body first, I'll often be fine.
23. One thing people say that gets under my skin is: not really something people say.... I don't like it when people underestimate my abilities because of my RSI. My abilitiy level and pain vary from day to day, so someone's estimate based on past experience with me may not be accurate.
24. But I love it when people: help me while honoring my strength and independence. Allow me to make my own choice to do things that might hurt me sometimes.
25. My favorite motto, scripture, quote that gets me through tough times is: Please be patient. God isn't finished with me yet. (it's usually addressed to myself.)
26. When someone is diagnosed I’d like to tell them: Work with your body's needs. Battling my body's needs and my disabilities hurts me because I am fighting myself. Sometimes you will have to make compromises. With limited physical resources, I rarely regret choosing that which pleases me over that which I think I should do. For example, on a day when I have the energy or ability to either enjoy the company of someone I love or wash the dishes, I often choose the company of someone I love.
27. Something that has surprised me about living with an illness is: how clear it makes it that I cannot use my own ability to judge what someone else may be able to do. It's a good thing, too. That means we are strong in different ways, so we can help each other with the things that are difficult.
28. The nicest thing someone did for me when I wasn’t feeling well was: hold me, feed me, and take me for walks.
29. I’m involved with Invisible Illness Week because: awareness of other's experiences help me empathize and treat them as they wish to be treated.
30. The fact that you read this list makes me feel: like you care to learn about my experience.
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
