1. The illness I live with is: Mal de Debarquement Syndrome (MdDS)
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: 2012
4. The biggest adjustment I’ve had to make is: I'm no longer completely independent on myself
5. Most people assume: Since I look & sound okay, that I'm okay
6. The hardest part about mornings are: Realizing that nothing has changed and I'm still suffering.
7. My favorite medical TV show is: Medical Mystery, The Doctors, and Dr. Oz
8. A gadget I couldn’t live without is: My cell phone. Its my life link if something were to happen while I'm home alone with my daughter.
9. The hardest part about nights are: Trying to fall asleep. I have insomnia some nights from the motion.
10. Each day I take _0-4 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: I continue to look for new treatments. I've tried a few different things, but they have made no change or made me feel worse.
12. If I had to choose between an invisible illness or visible I would choose: visible.
13. Regarding working and career: non-existent. I haven't been able to work since May. I continue to train myself to be able to get back to work.
14. People would be surprised to know: I have anxiety standing around people, even those I know, even my own family.
15. The hardest thing to accept about my new reality has been: I can't do everything that I want to do.
16. Something I never thought I could do with my illness that I did was: Travel again
17. The commercials about my illness: I haven't seen any.
18. Something I really miss doing since I was diagnosed is: Driving
19. It was really hard to have to give up: My job
20. A new hobby I have taken up since my diagnosis is: Writing this blog :-)
21. If I could have one day of feeling normal again I would: DRIVE!
22. My illness has taught me: Take each day one minute at time.
23. Want to know a secret? One thing people say that gets under my skin is: Are you sure you can't work?
24. But I love it when people: Have an open mind and ask questions without judgement.
25. My favorite motto, scripture, quote that gets me through tough times is: I don't have a quote or motto, but music usually puts me in a better mood. It relaxes me.
26. When someone is diagnosed I’d like to tell them: You are not alone and its not all in your head.
27. Something that has surprised me about living with an illness is: Changing and adjusting how I do things around my house and with my family.
28. The nicest thing someone did for me when I wasn’t feeling well was: My mom and little brother drove across town, bought dinner and brought it to my kids since I couldn't cook.
29. I’m involved with Invisible Illness Week because: I actually just found out about it, but I promote awareness as much as I can to this syndrome.
30. The fact that you read this list makes me feel: Like people are becoming more understanding in what I am dealing with on a day to day basis.
Doing this list made me think a lot about my MdDS, and the thing with filling this out tells you how this affects me. MdDS affects people different ways. It is diagnosed each time by doing different studies and crossing off other diagnoses first. I have learned that people have different symptoms that range on a scale from 0-9. Some people go into a "forever remission," some have a short period of remission, and unfortunately there are those who never do. Certain actions can exacerbate symptoms for some people while for others it makes their symptoms go away. That is the reality of the syndrome. So we need to continue to talk with one another, we need to be open and honest with our doctors and push our doctors to research this syndrome. We need to stand for our own healthcare and not take no for an answer. Invisible illnesses can be very frustrating, but we need to stay positive. We need to support one another and continue to reach out to those who are willing to help us. My goal is to get our information out to the public. It will take time, but we will be recognized and information will get out to those who continue to suffer without a diagnosis.
Questionnaire from: Our 30 Things Meme
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