30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: multiple endocrine failures along with several other diseases and conditions.
2. I was diagnosed with it in the year: 1986 Addison’s disease
3. But I had symptoms since: 1984
4. The biggest adjustment I’ve had to make is: to pace myself in how I use my energy
5. Most people assume: that I look normal so I must be well
6. The hardest part about mornings are: that I seldom feel rested or have more energy than when I went to bed
7. My favorite medical TV show is: Mystery Diagnosis because it took so long to diagnose me and House because he is so brilliant at diagnosis and so contrary in character.
8. A gadget I couldn’t live without is: my CPAP because it increases the quality of my sleep
9. The hardest part about nights are: Shutting off the worries and chatter in my mind
10. Each day I take _19_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: read and study them and then decide if I should give them a trial
12. If I had to choose between an invisible illness or visible I would choose: invisible because it allows you more privacy about who you share your health issues with
13. Regarding working and career: I truly miss being in the work world and contributing. I miss providing for myself and the independence that gave me.
14. People would be surprised to know: how exhausted I am every day
15. The hardest thing to accept about my new reality has been: that as active as my mind is at times, that my body often just cannot do the things I wish to accomplish
16. Something I never thought I could do with my illness that I did was: go on two hot air balloon rides and they were glorious
17. The commercials about my illness: there are none because it is so rare. The FM is in a commercial for a new US drug that is supposed to take away the pain.
18. Something I really miss doing since I was diagnosed is: waking up just once rested and energized and ready to do anything the day involved.
19. It was really hard to have to give up: working with children
20. A new hobby I have taken up since my diagnosis is: knitting on knitting boards or circles
21. If I could have one day of feeling normal again I would: spend it walking in nature going places that I don’t have energy to go to now or traveling to a distant country and being able to see all the sites.
22. My illness has taught me: to appreciate beauty and nature and my innate worth
23. Want to know a secret? One thing people say that gets under my skin is: that if I just had more faith I would be healed.
24. But I love it when people: accept my limitations and remain my friends
25. My favorite motto, scripture, quote that gets me through tough times is: What doesn’t kill you makes you stronger
26. When someone is diagnosed I’d like to tell them: that there is hope and that your illness may be given to you for a larger purpose than you can comprehend
27. Something that has surprised me about living with an illness is: how lonely it is at times
28. The nicest thing someone did for me when I wasn’t feeling well was: cleaning my home when I was in the hospital, looking after my children when I was too ill to care for them
29. I’m involved with Invisible Illness Week because: I know the stigma of having an invisible illness and having my health needs ignored since they are not obviously physical disabilities
30. The fact that you read this list makes me feel: acknowledged and accepted
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