30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW
1. The illnesses I live with are: Fibromyalgia, CFIDS, Myofascial Pain Syndrome, Celiac Disease, Bipolar II, and potential Narcolepsy, high-functioning Asperger's, and an unknown autoimmune condition.
2. I was diagnosed with it in the year: Ranges from roughly 2000 to 2009.
3. But I had symptoms since: birth and then new illnesses in 1998.
4. The biggest adjustment I’ve had to make is: changing my life to be about coping and staying alive instead of fulfilling my huge dreams.
5. Most people assume: That I am lazy or crazy.
6. The hardest part about mornings are: Trying to get my body to want to move again.
7. My favorite medical TV show is: House, I guess? Not a huge fan of medical TV shows.
8. A gadget I couldn’t live without is: My laptop - my life takes place more on the Internet now than in the real world.
9. The hardest part about nights are: The vast amounts of pain and sometimes inability to sleep because of it.
10. Each day I take __ pills & vitamins. (No comments, please) 35-40 (depending on pain level of the day).
11. Regarding alternative treatments I: Incorporate many of them into my treatment cycle, but do not dismiss Western medicine.
12. If I had to choose between an invisible illness or visible I would choose: I would rather choose healthy, but I think a visible illness would be easier to deal with when it comes to outside society.
13. Regarding working and career: I've never held down a job for more than 2 months in my entire life. My illnesses stole that capability from me.
14. People would be surprised to know: That I am very scared.
15. The hardest thing to accept about my new reality has been: The effects that the illnesses have had on my relationships with other people.
16. Something I never thought I could do with my illness that I did was: Get a Bachelor of Arts in Communication Studies and a college diploma as an Executive Office Assistant (as school is more flexible with absences than work).
17. The commercials about my illness: Make me sick to my stomach with how inaccurately the illnesses are portrayed.
18. Something I really miss doing since I was diagnosed is: Crafting and painting! I still get to do a little, but not nearly as much as I could!
19. It was really hard to have to give up: Driving. That loss of freedom hurts.
20. A new hobby I have taken up since my diagnosis is: Writing this blog!
21. If I could have one day of feeling normal again I would: Ride a horse along the beach with the ones I love!
22. My illness has taught me: To pace myself. To take care of myself as best I can.
23. Want to know a secret? One thing people say that gets under my skin is: "I wish I could have your illness so I could lay around on a couch and not be responsible". That one kills me. Or, "If I were you, I would have killed myself already." Also not a hit.
24. But I love it when people: Go out of their way to try and help me with the simple things that can throw my day off - cooking, dishes, filling pill cases.
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them: Hold on - you are in for a bumpy ride! (Plus, some useful tips in general...).
27. Something that has surprised me about living with an illness is: It never goes away, and if it does, it isn't for long. I always waited for that day. That day has never come. I still wait for that day.
28. The nicest thing someone did for me when I wasn’t feeling well was: Get groceries for me, cook a meal for me, play with my hair when I'm sobbing...
29. I’m involved with Invisible Illness Week because: AWARENESS is key to giving our lives more meaning. When we are belittled for what eats us up our entire lives, we feel heartbroken, betrayed, and a little crazy.
30. The fact that you read this list makes me feel: A little more noticed in the world :) and thankful someone cared to take the time to read it!