Sunday, September 13, 2009

Happy Invisible Illness Week!

Invisible Illness Week is Monday through Friday of this week!

30 Things About My Invisible Illness You May Not Know

1. The illness(es) I live with is:
Postural Orthostatic Tachycardia Syndrome(POTS), IBS, Anxiety(Panic Disorder) and the doctors are currently trying to diagnose what else is wrong.

2. I was diagnosed with it in the year:
IBS in 2000, Panic Disorder in 2006 (set off by a traumatic hospitalization) and POTS in 2007

3. But I had symptoms since:
Some for as long as I can remember and others, new ones, appear daily.
The most disabling conditions, the ones from the POTS, started around January of 2007.

4. The biggest adjustment I’ve had to make is:
Not being able to be a normal college student and having my independence taken away(living at home, not being able to drive, having to have my parents constantly remind me things).

5. Most people assume:
that I'm healthy, I put a convincing face on.

6. The hardest part about mornings are:
Finding the energy to get out of bed and stay standing.

7. My favorite medical TV show is:
Mystery Diagnosis, partly because my life is just that.

8. A gadget I couldn’t live without is:
My laptop(the bloggy world) and my iPod(I love music)

9. The hardest part about nights are:
Lying in bed, finding a position where I'm not in excruciating pain.
And only getting around 6-7 hours of sleep a night.

10. Each day I take:
No less than 2 pills and that's on a really, really good day. I sometimes take as many as 30.
I also wear a patch and (self-inject) 1 injection weekly.

11. Regarding alternative treatments I:
have tried everything. After so many, "I don't know what to tell you"s, I'm willing to try whatever I can to find relief.

12. If I had to choose between an invisible illness or visible I would choose:
They both are awful and each carry their own hardships and I wouldn't wish either on anyone.
With invisible illnesses it's isolating and tough to get people to believe you, with visible ones, it's hard to be treated differently.
I'd much rather choose to be healthy.

13. Regarding working and career:
I currently work one day a week and go to school full time.
"Sick days" have to leave me completely bedridden to stay home.

14. People would be surprised to know:
How many times a day I get looked at as if I'm lazy because I constantly have to sit down.

15. The hardest thing to accept about my new reality has been:
the isolation and loosing my once amazing memory.
Also, that if the POTS doesn't clear up in my twenties, I'll most likely be stuck living with it for the rest of my life.

16. Something I never thought I could do with my illness that I did was:
Move across the country by myself.

17. The commercials about my illness:
are pretty much non-existent.

18. Something I really miss doing since I was diagnosed is:
Dancing for hours on end and singing without damaged vocal cords(from so many antibiotics) and without running out of breath every 3 words.

19. It was really hard to have to give up:
Friends and being able to live on my own in college.

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:
Dance and sing.

22. My illness has taught me:
My illness is just one part of me and is not how I have to define myself.

23. Want to know a secret? One thing people say that gets under my skin is:
"But you don't look sick." and "You're overreacting."

24. But I love it when people:
Tell me they care.

25. My favorite motto, scripture, quote that gets me through tough times is:
"When the world tells you to give up, Hope whispers...Try it one more time."

26. When someone is diagnosed I’d like to tell them:
Push the limits of what you think you can do. Don't play it too safe and give up your life, secluding yourself from the outside world. Keep living.

27. Something that has surprised me about living with an illness is:
Not having doctors understand. I've only ever come across 3 doctors who've even hear of what I have and none that know enough to help me.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Come up to me and tell me I looked like I needed a hug and comforted me.

29. I’m involved with Invisible Illness Week because:
Too many people feel like they're alone in the struggle with a debilitating illness.

30. The fact that you read this list makes me feel:
Hopeful.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com


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3 comments:

Tricia said...

I like your list. I am sorry that it has to be you list, but I like how you put it together. Sometimes, even with more common illnesses, doctors and people still don't get it.
I wonder if Butterfly's Post Concussion Syndrome is considered an invisible illness. The least favorite response I get in the real world is, "Still?!?" said incredulously.

Too Many Hats said...

Hi Krissy, thanks for visiting my blog. I have never heard of this disease, I'm sure you are not surprised, and I am so sorry you have to deal with it. You sound like you have a great attitude though. Your blog is really beautiful - love the colors.

Megan said...

Thank you for sharing. I saw that you recently visited my blog so I thought I'd check out and see who you are. =) Obviously I didn't know what was going on with the first post I came to so I went scrolling and found this. I'm sorry that there are so many out there that don't understand what you're going through. Many prayers for you!!