Friday, August 24, 2012

30 Things You May Not Know About My Invisible Illness

This is a meme from Rest Ministries for Invisible Illness Week which is coming up in September.  You can go here to read about other people who live with chronic, invisible illnesses, and also get support if YOU have an invisible illness.

1. The[main] illness I live with is:  Myasthenia Gravis
2. I was diagnosed with it in the year:  2003
3. But I had symptoms since:   1995
4. The biggest adjustment I’ve had to make is:  depending on other people for SO much.  I HATE not being independent, and it's really tough to lose that.
5. Most people assume:  I've just lazy because I'm overweight, and if I lost weight I would be healthy.
6. The hardest part about mornings are:  If I have to go anywhere.  It takes me FOREVER to get ready.  I have to do my nebulizer for my trach, clean the trach, (have coffee first, of course!) pack my suction machine, and of course do hair and make-up.  It's usually a 2 hour process. Ug.
7. My favorite medical TV show is:   House.  But it's over. Boo-hoo!
8. A gadget I couldn’t live without is:  My computer!!!!
9. The hardest part about nights are:  Sleeping.  I have a vent now, so I can FINALLY sleep on my back again (still propped up and on a wedge).  But because I don't have a cuffed trach, I have to wear a band around my neck that's not very comfortable.  Otherwise, if I sleep without the vent, I have to sleep on my sides, and I have arthritis in my hips, so it's usually painful.
10. Each day I take FORTY-THREE (43)  pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:  don't have much to say.  I've tried what I've tried and nothing has helped, unless you consider going to the chiropractor "alternative."
12. If I had to choose between an invisible illness or visible I would choose:  Visible.  I'm sick of being judged.  I don't want pity either, but people see me, and because I have my hair not a total mess and I have make-up on, I must be fine.
13. Regarding working and career:  I had to quit the job I loved more than any other job I've ever had because I couldn't speak clearly on the phone, and no one could understand me.  I also wasn't sleeping, and I couldn't hold up head up. I had to prop it up with my chin on my hand, elbow on the table or counter.  I tried going back to work for 12 hours a week (different place), then 8, then 4. Couldn't do it.
14. People would be surprised to know:  how much crap I have to take with me if I go somewhere overnight. Whether I'm going for one night or one month, it's basically the same.
15. The hardest thing to accept about my new reality has been:  Not being able to be spontaneous, to just jump in the car and run to the store, or just grab a toothbrush and change of clothes and go somewhere overnight.  I feel isolated and imprisoned.
16. Something I never thought I could do with my illness that I did was:  Have my beautiful boy!!!
17. The commercials about my illness:  don't exist
18. Something I really miss doing since I was diagnosed is:  Singing.  I miss it every. single. day.
19. It was really hard to have to give up:  My job.
20. A new hobby I have taken up since my diagnosis is: making jewelry.
21. If I could have one day of feeling normal again I would:  get in the car and just GO.  Go shopping, go to a movie (because I wouldn't have to worry about germs), sing my fool head off, go swimming (can't with the trach)....I'd be up 24 hours just being me and doing things I love.
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:  "You look great!"
24. But I love it when people:  Ask me how I'm doing, and REALLY want to know the truth.
25. My favorite motto, scripture, quote that gets me through tough times is: "My flesh and my heart fail; But God is the strength of my heart and my portion forever." Psalm 73:26
26. When someone is diagnosed I’d like to tell them:  It's not a death sentence.  It WILL change your life, but you can still have a GOOD life.  Just a different one.
27. Something that has surprised me about living with an illness is:  How isolating it is.
28. The nicest thing someone did for me when I wasn’t feeling well was:  Came over and cleaned my house, AND brought several meals (thanks Karen and Kerry!)
29. I’m involved with Invisible Illness Week because:  I want people to UNDERSTAND invisible illness, the stigma, the isolation, and the emotional toil having a chronic illness takes on me and my family.
30. The fact that you read this list makes me feel: Like I matter.

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