Invisible Illness Week- 30 Things About My Invisible Illness

Tuesday, September 09, 2014

 "I am more than what you see." -Unknown

This week- September 8th through 14th, 2014- is Invisible Illness Week (IIWk). It's all about spreading hope for those suffering from invisible illnesses.

I've been trying to do a blog post like this for the past month or so, and could never think of the right words to say. I found this on Invisible Illness Week's website, and decided it was just what I needed. So here ya go- hopefully you learn something new about me. Be sure to visit their website for more information about IIWk and life with invisible illness.

30 Things You Might Not Know About My Invisible Illness

1. The illness(es) I live with are: Ehler's-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS).
2. I was diagnosed with it in the year: 2013 for POTS, and 2014 for EDS.
3. But I had symptoms since: at least 2012 for POTS, and because EDS is a genetic disorder, I've always had it and experienced many of the symptoms of it. (Hypermobility in particular.)
4. The biggest adjustment I’ve had to make is: recognizing that there are things I cannot do anymore, and finding ways to work with my body instead of against it.
5. Most people assume: that I must be very clumsy because I'm always getting hurt due to my EDS.
6. The hardest part about mornings are: just mustering the energy to get going.
7. My favorite medical TV show is: M*A*S*H
8. A gadget I couldn’t live without is: my computer.
9. The hardest part about nights are: the pain that makes it hard to sleep.
10. Each day I take 18 pills & vitamins.

11. Regarding alternative treatments I: am fairly open, though a little skeptical.
12. If I had to choose between an invisible illness or visible I would choose: to stay with what I have now, although I don't think one is better than the other.
13. Regarding working and career: I had to give up my babysitting job because of my lack of energy and patience, but I do hope to look into working somewhere once I turn 16. Eventually, I plan to pursue a degree in Communications.
14. People would be surprised to know: that I can swallow at least eleven pills at one time.
15. The hardest thing to accept about my new reality has been:
accepting that I can't do everything I used to be able to, and that sometimes I do need help.
16. Something I never thought I could do with my illness that I did was: raise $1,000 to fund the building of a well through Gospel for Asia.
17. The commercials about my illness: are fairly nonexistent. I have never seen or heard one.
18. Something I really miss doing since I was diagnosed is: having the ability to be spontaneous. I can't just go out and do something anymore- I need to plan ahead in an attempt to have the energy, make sure I have taken my medication, etc.
19. It was really hard to have to give up: being so active. I used to dance at least three days a week, as well as my normal stuff. I have had to cut back on a lot of that due to my illness taking away so much energy.
20. A new hobby I have taken up since my diagnosis is: writing. It had been a casual hobby for a while, but it was only after I got sick that I really began to see how much it meant to me.
21. If I could have one day of feeling normal again I would: go out someplace with my friends, walk around a lot, and then share a really nice meal. Maybe at a buffet.
22. My illness has taught me: that things happen and plans change, but God is still God, and He is never going to let me down. I just have to take things one day at a time and allow Him to work through me.
23. Want to know a secret? One thing people say that gets under my skin is: "I get that too sometimes." Uh... just no.
24. But I love it when people: allow me to talk about my illness while not pressuring me if I don't want to.
25. My favorite motto, scripture, quote that gets me through tough times is: "
Remember He is the artist and you are only the picture. You can't see it. So quietly submit to be painted... You are in the right way. Walk--don't keep on looking at it.”  -C. S. Lewis 
26. When someone is diagnosed I’d like to tell them: that while things may not "get better", there will be better days.
27. Something that has surprised me about living with an illness is: how much more sensitive I have become to the suffering of others. I am able to pick up very subtle clues as to when a person is feeling unwell that I previously would not have noticed.
28. The nicest thing someone did for me when I wasn’t feeling well was: helping me out while I was on crutches.
29. I’m involved with Invisible Illness Week because: I want other people with an invisible illness to see that they're not alone.
30. The fact that you read this list makes me feel: honored. Thank you!

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  1. I can take about 8 pills at a time, but I have never tried for 11. I can also take pills at a drinking fountain, which some people find challenging. But I cannot take liquid medicine at all. I can take the flavored kind for little kids, sometimes. Anything else makes me gag immediately!

  2. Thank you so much for sharing! #27 is really interesting. I've noticed the same thing in myself too.

  3. You are a brave and courageous girl. My husband's fave show is MASH too!!!