1. The invisible illness I live with is: ankylosing spondylitis (AS)
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: 2005
4. The biggest adjustment I’ve had to make is: Not being able to hike, cycle, run, garden--be active in all the ways I used to be. And I’ve been unable to work for the past year and a half.
5. Most people assume: That I’m really not that sick because “you look good!”
6. The hardest part about mornings are: EVERYTHING. I’m so stiff in the mornings it’s generally pretty hard for me to move. And no matter how much sleep I get, I’m always tired. After showering, getting dressed, cleaning the cat box and feeding the cats....I’m usually exhausted and often need to lay down for a half hour or hour before the next round begins. This has gotten better since starting Remicade, and I am steadily improving despite the peskiness of anemia which my doctor is trying to uncover the cause of.
7. My favorite medical TV show is: I confess to a Grey’s Anatomy guilty obsession, but other than that I don’t watch medical shows.
8. A gadget I couldn’t live without is: my MacBook....it has music and photos and poems which feed my spirit and soul
9. The hardest part about nights are: Being exhausted and not able to sleep. The night sweats...waking up drenched (and shivering) and having to change clothes and grab some other blankets to sleep on top of the other bedding. Not being able to breathe courtesy of the costochondritis, so having to be propped up. The fire of swollen achilles that hurt even when they are touched by thin bed sheets. Not being able to get comfortable enough, period. Being alone.
10. Each day I take: too damn many pills & vitamins. (No comments, please)
11. Regarding alternative treatments: I’m currently reading about alternative treatments and experimenting with diet changes.
12. If I had to choose between an invisible illness or visible I would choose: Neither. Being sick isn’t fun whether the illness is visible or invisible.
13. Regarding working and career: I’m in the process of reinvention, and start grad school in September. It’s hard starting over at this age, but I’m determined to live a life with Purpose and help others along the way.
14. People would be surprised to know: How physically ugly I feel every day.
15. The hardest thing to accept about my new reality has been: That the AS will be with me forever. Even if I go into remission, the damage is permanent. And I will have to make constant readjustments throughout my life. My old life...the active fitness warrior life I had may be lost forever.
16. Something I never thought I could do with my illness that I did was: thrive.
17. The commercials about my illness: There are no commercials about AS. In fact, most people have not heard of it despite how common it is. "Anka-WHAT!?" Find out more here....
18. Something I really miss doing since I was diagnosed is: cycling and vigorous mountain hiking and trail running....and just being able to go go go!
19. It was really hard to have to give up: the gardening and landscaping
20. A new hobby I have taken up since my diagnosis is: I just continue to work even more deeply with what I have always loved....writing, art, music, books....
21. If I could have one day of feeling normal again I would: run and bike and hike everywhere
22. My illness has taught me: who my true friends are
23. Want to know a secret? One thing people say that gets under my skin is: are you feeling better today?
24. But I love it when people: listen.
25. My favorite motto, scripture, quote that gets me through tough times is: "I am the master of my fate; I am the captain of my soul"
26. When someone is diagnosed I’d like to tell them: it’s not the end....be your own best advocate...you can live and thrive
27. Something that has surprised me about living with an illness is: the assumptions people make
28. The nicest thing someone did for me when I wasn’t feeling well was: just let me be....no chiming in with platitudes
29. I’m involved with making invisible illnesses visible because: sharing one’s story is one of the best ways to effect change
30. The fact that you read this list makes me feel: hopeful that advocacy efforts around invisible illnesses will succeed
Thanks for putting words around all that. Takes courage.
ReplyDelete