28 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

  1. The illness(es) I live with is: Interstitial Cystitis (IC), Endometriosis and Pelvic Floor Dysfunction.
  2. I was diagnosed with it in the year: 2012.
  3. I have had symptoms since: 2012.
  4. The biggest adjustment I’ve had to make is: Not being able to eat the things i used to and even that list keeps constantly changing.
  5. Most people assume: I am faking it for attention.
  6. The hardest part about mornings is: Changing my clothes into ‘normal’ clothes. Most days i have things like appointments and as hard as it is, i always try to look half way presentable, which takes a huge amount of energy.
  7. My favorite guilty pleasure is: Kit kats.
  8. A gadget I couldn’t live without is: My computer
  9. The hardest part about nights are: Insomnia due to pain.
  10. Each day I take: 10 medications, every morning, noon and night times.
  11. Regarding alternative treatments I: Have tried almost everything and my pain management doctor is running out of ways to help.
  12. Regarding working and career: I am on disability, therefore unable to work but I did recently sign up for a beginning ASL class at a local college. Just one class, but it’s a start.
  13. People would be surprised to know: I am much sicker than i look.
  14. The hardest thing to accept about my new reality has been: Losing family and friends.
  15. Something I never thought I could do with my illness that I did was: Accept it; although I will never be happy about it.
  16. The commercials about my illness: Not sure actually.
  17. Something I really miss doing since i was diagnosed is: Going on long walks by the Snake River up from my house.
  18. It was really hard to have to give up: Food i love.
  19. A new hobby I have taken up since my diagnosis is: Writing, Jewelry making.
  20. If i could have one day of feeling normal again I would: Go on a long walk, eat my favorite foods and go swimming.
  21. My illness has taught me: To believe in myself when others don’t.
  22. Want to know a secret? My illness is worse than i usually tell people.
  23. But I love it when people: Ask how i am and actually want to talk.
  24. My favorite motto, scripture, quote that gets me through tough times is:Perhaps the butterfly is proof that you can go through a great deal of darkness yet still become something beautiful ❤
  25. When someone is diagnosed I’d like to tell them: They are not alone. Ever.
  26. Something that has surprised me about living with an illness is: I am more confident.
  27. The nicest thing someone did for me when I wasn’t feeling well was: Brought me food and a book to read.
  28. The fact that you read this list makes me feel: Happy that you cared enough to read this all the way to the end.

 

4 thoughts on “28 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

  1. Mazoli - Blog Author says:

    I love your post! I too have IC (diagnosed in 2005). IC is such a challenging disease. Having a great support system is so important. Drop by my blog when you get a chance – https://treatinginterstitialcystitis.com/ – I would love for you to share your experiences with my readers. I am hoping 2019 is a much better year than 2018. Thanks for blogging about IC. People need to know about it and how it affects those who are diagnosed with it.

    Like

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