30 things...

30 Things About My Invisible Illness You May Not Know


1. The illness I live with is: Dysautonomia

2. I was diagnosed with it in the year: 2004.

3. But I had symptoms since: My symptoms weren't life changing until 2004 but when I look back, I realize that a lot of things I thought were normal actually weren't. As far back as Elementary school I would wake up extremely dizzy to the point where I missed a lot of school because I was so severely dizzy. My mom and I thought all the dizziness was caused by allergies. As I got older I noticed that I had a very hard time memorizing ballet recital pieces and marching band drills. In school, my grades were slipping because I could not remember a single thing that I had just learned.

4. The biggest adjustment I’ve had to make is: I've had to make many adjustments, but I think the biggest adjustment that I've had to make was adapting to a new way of living and doing some things in a new way.

5. Most people assume: Many people assume that Dysautonomic's are lazy and that is SO not true. Believe me, we would rather be up and about doing things, going places, seeing people, not stuck in bed or on the couch.

6. The hardest part about mornings are: Standing up without feeling like you are about to pass out.

7. My favorite medical TV show is: Just about anything on Discovery Health.

8. A gadget I couldn’t live without is: My cell phone and my laptop.

9. The hardest part about nights is: Feeling like there's still more to do and not the energy to do it.

10. Each day I take __ pills & vitamins: Oh, I don't even want to go there because it's pretty many and I don't like thinking about it really.

11. Regarding alternative treatments I: I have been going to acupuncture and find that it helps with my sleeping and some other little things.

12. If I had to choose between an invisible illness or visible I would choose: Neither! But, if I had to choose, it would visible. I say that because especially when I go to the ER, I get looked at with weird looks because I don't look sick. I'm not oozing blood, I don't have a bone popping out....I look fine and doctors and nurses then believe that I'm there just to get attention.

13. Regarding working and career: Right now I am on SSI but my goal is to get a job someday working people either as an medical aide or RN if I would miraculously recover!

14. People would be surprised to know: I have had a lot of people come to me and tell me that they are surprised and glad that I seem to be able to handle everything with maturity and bravery. I feel that I have matured in many ways since being diagnosed but some people would be surprised to know that I do have periods of times where I cry because I am scared. I'm not always as brave as I look!

15. The hardest thing to accept about my new reality has been: Dysautonomia is so unpredictable so often times I back out of plans because I suddenly become sick. This often times upsets or angers friends or family members.

16. Something I never thought I could do with my illness that I did was: Hang out with friends again!

17. The commercials about my illness: The day I see a commercial about Dysautonomia, I will faint. lol. (Sorry Kyli, I had to use your answer...so cute!)

18. Something I really miss doing since I was diagnosed is: Dancing ballet and being in marching band!!

19. It was really hard to have to give up: Physically going to high school. Having tutors in the home is just not the same.

20. A new hobby I have taken up since my diagnosis is: Collecting spoons because of The Spoon Theory

21. If I could have one day of feeling normal again I would: Do chores that need to be done and that require the most energy....if I'm only going to have 1 day of feeling normal, I might as well use it wisely.

22. My illness has taught me: So, so much. It really has. I've learned that even though someone may not look like they are sick or handicapped, they very well could be and we need to respect them and treat them with respect. Loving people for who they are on the inside and not what they look like on the outside. I think the biggest thing that my illness has taught me is to not be selfish-- to be greatful for what you have and not greedy. Life can be so short and it upsets me when I see people abusing their bodies or making themselves sick....if only they could walk in my shoes........

23. Want to know a secret? I wish I could have met Corrie Ten Boom.

24. But I love it when people: Treat you with kindness and respect. This especially goes for all medical staff.

25. My favorite motto, scripture, quote that gets me through tough times is:

"Lord, make me an instrument of your peace,
Where there is hatred, let me sow love;
where there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
where there is sadness, joy;

O Divine Master, grant that I may not so much seek to be consoled as to console;
to be understood as to understand;
to be loved as to love.

For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life."

"Blessed are the peacemakers,
for they will be called sons of God"

26. When someone is diagnosed I’d like to tell them: It WILL get better. You're stronger than you know.

27. Something that has surprised me about living with an illness is: How different life can be.

28. The nicest thing someone did for me when I wasn’t feeling well was: Understood and didn't get mad at me ending our outing.

29. I’m involved with Invisible Illness Week so: Because ironically invisible illness patients often times find themselves feeling invisible!

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