Invisible Illness Questionaire For Invisible Illness Week

1. The illness I live with is: Postural Orthostatic Tachycardia Syndrome (POTS), Inappropriate Sinus Tachycardia, Mitral Valve Prolapse, Fibromyalgia and Crohn’s Disease

Visibility

2. I was diagnosed with it in the year: starting 2002

3. But I had symptoms since: off and on since I was 9

4. The biggest adjustment I’ve had to make is: Pacing myself, not drinking lol and eating properly

5. Many people assume:
I don’t know, possibly that it’s “not that bad” because I look fine

6.The hardest part  about mornings are:
Being really dizzy, weak and nausea while trying to get something to eat

7. My favorite medical TV show is: Grey’s Anatomy

8. A gadget I couldn’t live without is: My comp.

9. The hardest part about nights are: When I lay down my blood pressure goes really low, I get really hot and I feel really sick to my stomach and in a lot of pain making it hard to sleep

10. Each day I take: I take a multi vitamin, an SNRI, and a Beta Blocker

11. Regarding alternative treatments: I’m willing to try any and all after doing some research on it.

12. If I had to choose between an invisible illness or visible I would choose: Well, I met great ppl through both my illnesses being invisible and it’s given me a better sympathy for people, but a visible one… or at least one that’s treatable would be better lol

13. Regarding working and career: I used to work 70 hrs a week and slowly trickled down to not being able to work at all. I want to be a social service worker and am still working on it, so hopefully some day when/if I get better I can have career.

14. People would be surprised to know: That they really have no idea how much energy it takes to do the simplest tasks like getting a drink

15. The hardest thing to accept about my new reality has been: That I can’t be busy and moving around constantly. It drives me nuts! Lol I like to be able to do what I want, and pots doesn’t allow that.

16. Something I never thought I could do with my illness that I did was: haven’t found it yet lol

17. The commercials about my illness: Are non existent! And for crohn’s very little

18. Something I really miss doing since I was diagnosed is: working! working out, going out dancing, going for walks

19. It was really hard to have to give up: work especially and a lot of the things I do socially

20. A new hobby I have taken up since my diagnosis is: videos, helping others with it, site work, painting again

21. If I could have one day of feeling normal again I would: Go to the gym, and have all my friends over for a home cooked meal and then go out dancing and just being hyper and crazy like before

Outside the Doctor’s Office

22. My illness has taught me: who my true friends are, to be appreciative of little things, to be more compassionate… but only sometimes lol jk

23. Want to know a secret? I actually crave good food now! weiiiirrrdd lol

24. But I love it when people: show genuine interest in trying to get me better (dr.s)

25. My favorite motto, scripture, quote that gets me through tough times is: never regret something that made you smile

26. When someone is diagnosed I’d like to tell them: good luck sucka! lol no… I don’t know, that it’s a struggle, but be persistent and don’t give up on fighting to find out how to get better

27. Something that has surprised me about living with an illness is: How much I really was on the go before and not taking care of myself the ways I could have been

28. The nicest thing someone did for me when I wasn’t feeling well was: actually be there for me to let me know they cared

29. I’m involved with Invisible Illness Week because: there’s no reason with illnesses this old to still be invisible after all this time

Would love to see your answers!

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