It's Invisible Illness Week

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: In order of Severity: Myalgic Encephalomyelitis, Dysautonomia (POTS), IBS, Depression, Interstitial Cystitis, Fibromyalgia, Endometriosis, Degenerative Disc Disease, among others that are not worth mentioning.

2. I was diagnosed with it in the year: 2002 for Fibromyalgia, 2006 Endometriosis, 2008 w/CFS/ME, 2010 for Interstitial Cystitis

3. But I had symptoms since:  2001 is when the pain first started becoming troublesome 2002 when it became a real problem, and constant, for awhile. It's suspected I contracted CFS/ME due to food poisoning in 2002 as well. Depression, since I was 13.

4. The biggest adjustment I’ve had to make is: Learning not to buy into the feeling that I'm worthless in American Society if I don't work, accepting that I can no longer do "anything if I really want to", learning to ask for help. Learning to try and let it roll of me that people might think I'm lazy, a pill popper, prissy, a weakling...It still smarts, no matter how hard I try. And I miss being a bit of a tomboy!

5. Most people assume: I’m healthy and capable of normal activities; they have no idea I can only keep up the facade for a few hours under good circumstances. 

6. The hardest part about mornings are: Waking up and staying that way long enough to prop myself up so I don't drift back off and my heart has time to adjust, and those first steps when my feet hurt.

7. My favorite medical TV show is: House. I wish I had a doctor like him!

8. A gadget I couldn’t live without is: My laptop, cuz between my back/neck problems & POTS, I can no longer sit at a regular computer for long, my laptop lets me lean back, even lie down & helps keep me entertained & informed. :)

9. The hardest part about nights are:  Going to bed when it seemingly took all day to finally feel okay, knowing I have to start all over again the next morning.

10. Each day I take about 6 pills & a host of supplements.

11. Regarding alternative treatments I: have been priceless for getting my FM & DDD pain under control, as well as spiritually; I just wish I could afford them these days!

12. If I had to choose between an invisible illness or visible I would choose: A visible illness, for sure. I'd gladly give an arm or leg if I could feel and function otherwise normally!

13. Regarding working and career: I’ve had to give up on that for now, I wouldn't before and it made me wayyy sicker. It was very frustrating because I had just gotten to the point where I could make a livable wage. I hope someday to get well enough to go back to school, maybe become a librarian, a nice quiet desk job. Giving up my last "real" part-time job though, was one of the most devastating things I've ever had to face.

14. People would be surprised to know: that I'm usually upbeat, in person, lol!

15. The hardest thing to accept about my new reality has been: being broke, learning my limits (still learning) facing my limitations, fighting the feeling that I'm letting people down or not trying hard enough.

16. Something I never thought I could do with my illness that I did was: Accept that so many things are out of my control. (Still working on it!)

17. The commercials about my illness: are misleading, because they seem to give people the impression it works for everyone, doesn't mention all side effects, and will make us all better. They also had a ridiculous amount of trouble pronouncing FIBROMYALGIA.

18. Something I really miss doing since I was diagnosed is: going to concerts, having a normal life, working, having a plan and goals, being able to buy cute clothes!

19. It was really hard to have to give up: having an active social life, going to concerts, partying like a rockstar. My friends when I had to move in with my Dad. Hardest of all was Working!

20. A new hobby I have taken up since my diagnosis is: Blogging.

21. If I could have one day of feeling normal again I would: I really don't know...maybe I'm greedy, but one day just doesn't seem like enough, lol, and for things to be really normal, I'd have to go back in time!

22. My illness has taught me: to ask for help when I need it.  I was never good at that before and I still find it hard now.

23. Want to know a secret? One thing people say that gets under my skin is: When they play the one-up game, or belittle my pain. Or worse, when they try and sell me "miracle cures", especially if they are family and seem more interested in making a sale than in our relationship.

24. But I love it when people: Ask if there's anything they can do to help, or just come visit.

25. My favorite motto, scripture, quote that gets me through tough times is: I should probably get one of those!

26. When someone is diagnosed I’d like to tell them: It's VERY hard work, but you CAN get things under control, or at least improve the pain. For the rest, promising new treatments are on the horizon. Keep your family or friends close, because you will need a support system, but remember that most of all it's up to YOU!

27. Something that has surprised me about living with an illness is: that I've made it through so many seemingly impossible times and can still find rays of hope here & there. And people and their random acts of kindness!

28. The nicest thing someone did for me when I wasn’t feeling well was: My friend came over with her daughter and helped me vaccuum, put away laundry, and do dishes. I was seriously over the moon! It makes life so much easier when you're sick, does wonders for your outlook to not have to look at the mess and feel the despair, and just fills me with awe to feel that people could be so kind.

29. I’m involved with Invisible Illness Week because: I have a host of invisible illnesses, and I hate that I and so many people are suffering and so little is being done to help. I hope that one day many of these under-recognized illnesses will be as well known as Cancer and AIDS, because they cause just as much suffering. At least one doctor has said they would choose AIDS over CFS/ME.

30. The fact that you read this list makes me feel: loved and supported, and like I am succeeding at something. So please feel free to comment so I know you read!

To list your 30 things, click here.