I found this "invisible illnesses questionnaire" on another POTS sufferer's blog, and I thought it might be interesting to give it a go
1. The illness I live with is:
2. I was diagnosed with it in the year:
2010
3. But I had symptoms since:
severely/constantly starting in 2008
4. The biggest adjustment I’ve had to make is:
learning how to deal with it on my own. Losing my friends, family, school and job almost all at once.
5. Many people assume:
that it’s “not that bad” because I look fine, or that it doesn't exist because they've never heard of it.
that it’s “not that bad” because I look fine, or that it doesn't exist because they've never heard of it.
6.The hardest part about mornings:
trying to eat on top of nausea, choking down pills, being lightheaded, constant exhaustion and taking multiple tries just to get out of bed...even worse when followed by nightmares or insomnia.
7. My favorite medical TV show is:
ER, followed by House and (I guess) Private Practice
8. A gadget I couldn’t live without is:
My computer I suppose. It's my connection to the outside world for the time being.
9. The hardest part about nights:
waking up from sleep apnea caused by my POTS. Or my heart skipping a beat because my blood pressure plummets over night
10. Each day I take:
ranitidine (for GERD), midodrine and Florinef...although that may change in the near future. I also wear compression stockings.
11. Regarding alternative treatments:
I’m willing to try any and all after doing some research on it. I tried the 'natural' route, and it didn't work. I've tried some medications and they've somewhat helped but nowhere near enough.
12. If I had to choose between an invisible illness or visible I would choose:
Part of me likes that I have this particular 'invisible illness' because it's relatively rare and unique. However, I would find it easier to deal with people if I had a visible illness. Or at least a treatable one. Rarely, on my worst days, I have trouble feeling sympathy for people with treatable/visible illnesses. (It's rare but I still feel awful feeling that way.)
13. Regarding working and career:
I was well on my way to being a teacher. I was in the middle of student teaching when my POTS got to be so bad that I could no longer function. I changed my degree to be a pure science because I couldn't finish my student teaching portion. It broke my heart to see my future plans come to a grinding halt. I've been searching for help/ some relief for the last year and a half, so I can have a job, career, and future again.
14. People would be surprised to know:
That they really have no idea how much energy it takes me just to do the simplest tasks. I have to plan days in advance to take a trip to the grocery store. I can't just take off at a moments notice, or even shower when I want to. I've almost passed out trying to use the bathroom! They'd be surprised just how hard life really is.
15. The hardest thing to accept about my new reality has been:
Losing my friends. I don't get to be the average 20-something, and (mostly) the average 20-something doesn't understand/care to deal with someone with this kind of illness. (I have a friend or two who try to understand, but everyone else is gone.) Most people want to party, and go to the movies, and go out to eat whenever they feel like it, and don't understand what my life is like and that there are days, out of nowhere, where I just can't do them.
16. Something I never thought I could do with my illness that I did was:
take a road trip. It went better than I thought, but I got horribly sick after for the stress on my body.
17. The commercials about my illness:
Are non existent! Although, it was (briefly) on an episode of "House, M.D."
18. Something I really miss doing since I was diagnosed is:
walking, exercising, being able to leave the house for more than an hour, getting a good night's sleep, not having intolerances to foods, being outdoors, sunning outside, the list goes on and on...
19. It was really hard to have to give up:
work (I loved my job), being social (I wasn't out all of the time, but now I can't do it at all), certain foods, playing with my dogs, and my entire future (for now.)
20. A new hobby I have taken up since my diagnosis is:
this blog (I guess), participating on a goal-setting website, and Postcrossing. (a website that allows you to send/receive postcards from all over the world.) They help me feel less cut off from the world and alone.
21. If I could have one day of feeling normal again I would:
go for a walk, eat what I want, take a day trip to somewhere fabulous, volunteer. (Seeing as it would only last one day, getting a job would be pointless lol)
Outside the Doctor’s Office
22. My illness has taught me:
who my real friends are, and how lucky I was before I had this condition.
23. Want to know a secret?
I'm terrified that I'll be too sick to even have a wedding, that I'll have a heart attack young, and/or that having kids could be impossible.
24. But I love it when people:
show genuine interest in trying to help me feel better, or when they ask questions and/or at least try to understand my condition.
25. My favorite motto, scripture, quote that gets me through tough times is:
"Damaged people are dangerous; they know they can survive"
26. When someone is diagnosed I’d like to tell them:
we're all in this together, so feel free to call on me anytime.
27. Something that has surprised me about living with an illness is:
How active I really was before I had it. How little some people can care for a suffering human being who is/was active in their lives.
28. The nicest thing someone did for me when I wasn’t feeling well was:
being there for me. Sometimes it helps just to have someone listen, even when they can't help/make it better. My boyfriend/a friend or two have also tried looking on their own for some help/solutions. It means more than they'll ever know.
