Invisible Illness Awareness Week « Shoot Me Now

Shoot Me NowInvisible Illness Awareness Week

Invisible Illness Awareness Week
Published on Monday, August 31, 2009 by

Invisible Illness Awareness Week runs from September 14 – 20.  I recently found a “30 Things You Didn’t Know” list that is tied to invisible illnesses.  I filled it out in support of the many people who suffer in silence, and dedicate this post to everyone with gastroparesis and Lyme disease.  I hate the fact that I am actually able to fill this out, due to my own invisible illness.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with:  Gastroparesis. My stomach is “paralyzed” and does not digest food on it’s own.

2. I was diagnosed with it in the year: I’m not sure anymore. I believe ’07.

3. But I had symptoms since:  Off and on for a few years. I didn’t know what it was at the time.

4. The biggest adjustment I’ve had to make is:  Changing everything I’ve ever known and loved about food.  It is also hard looking at food and equating it to pain.  You have to eat to live, but you can’t eat, so how do you live?

5. Most people assume:  That since I look fine, I AM fine.

6. The hardest part about mornings are:  The nausea, and the knowledge that breakfast is forever gone from my life.

7. My favorite medical TV show is:  I don’t watch any.

8. A gadget I couldn’t live without is:  On bad days, my Magic Bullet blender.

9. The hardest part about nights are:  Some nights are good, others are very “refluxy.”  But honestly mornings are the bad time.

10. Each day I take __ pills & vitamins: Can only drink liquid vitamins, and can’t pay for that right now. I have to take a pill (motilium) every time I eat a meal or I simply can’t eat.

11. Regarding alternative treatments I: Would love to have enough money to try a chiropractor (some know how to work with stomach problems) and acupuncture. I would also love to try SAFE natural herbs.

12. If I had to choose between an invisible illness or visible I would choose:  What a hard question, if not a moral dilemma. I would not want to show off an illness, however sometimes it would help for people to see how much I am doing while feeling so bad.

13. Regarding working and career:  I thank God I have been able to continue working, since many with GP are unable to.  But it is hard trying to do the whole “food/nausea/pain” thing sometimes.

14. People would be surprised to know:  That half the time I am talking to them and smiling, I am sick to my stomach or in pain and am hiding it.

15. The hardest thing to accept about my new reality has been: That if I am stranded somewhere without motilium, I simply can’t eat. That is scary.  And worrying about who will order it from Brazil for me when I am old an unable to take care of myself.

16. Something I never thought I could do with my illness that I did was:  Figure out ways to work around food so I can function on a day to day basis.

17. The commercials about my illness: Are NON-EXISTENT!!

18. Something I really miss doing since I was diagnosed is:  EAT SALAD AND STEAK AND BREAKFAST!

19. It was really hard to have to give up:  Salad.

20. A new hobby I have taken up since my diagnosis is:  Knitting.

21. If I could have one day of feeling normal again I would:  You can guess. Eat breakfast and then a huge salad after. A Caesar salad.

22. My illness has taught me:  There are people all around you suffering quietly and you have no idea, so never complain.

23. Want to know a secret? One thing people say that gets under my skin is:  “I’m starving!”  OR… just complaining about every little thing when life is truly a blessing.

24. But I love it when people:  Ask questions about my illness because they really REALLY want to understand.

25. My favorite motto, scripture, quote that gets me through tough times is:  Every morning, just like Zig Ziglar, I say to myself BEFORE getting out of bed, “Today is going to be a GREAT DAY!” I also pray a lot and try to thank God for every blessing I have.

26. When someone is diagnosed I’d like to tell them:  Order motilium and join the yahoo gastroparesis group.  Also, there IS life without normal food.  It will be OK, but it takes up to six months to even mentally adjust.

27. Something that has surprised me about living with an illness is:  You never know what will hit you and when. Take joy in every moment you have feeling good – even if it is while sitting at an office desk.

28. The nicest thing someone did for me when I wasn’t feeling well was: Gosh, my Mom  – she does everything she can to prepare meals that are easy on my stomach – to find ways to cook vegetables that my stomach can tolerate – to buy me a special yogurt that enables me to put something in my stomach in the MORNING… she is the bomb!

29. I’m involved with Invisible Illness Week because:  To get the word out  – there are so many people suffering around you that you don’t know – so be more tolerant of others if they seem “grumpy,” and enjoy every healthy moment you have.

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

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