So my when I opened my Facebook this morning, my memories from previous years popped up. One of those memories was one that was hard for me to read but at the same time it made me smile. It showed me where I've accomplished in the last 5 years, and I continue to keep moving forward. I have any many trials and tribulations during this time. Some failures, but many more successes. So I decided to re-answer the questionnaire. My new answers are in purple. Some answers may stay the same, but many have changed. The first three questions are the same answers.
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 ...Not being too hard on myself when I don't accomplish something the first time around.
5. Most people assume: Since I look & sound okay, that I'm okay same
6. The hardest part about mornings are: Realizing that nothing has changed and I'm still suffering. On my good days, the hardest part is getting everyone out the door on time. On my bad days, not getting sad that I'm not getting up like I hoped.
7. My favorite medical TV show is: Medical Mystery, The Doctors, and Dr. Oz...Grey's Anatomy (lol...seriously, I don't watch the others anymore)
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. Again my phone, especially when I'm home alone, but along with this is my tablet so that I have something to keep me busy when I'm stuck in bed or trying to distract myself.
9. The hardest part about nights are: Trying to fall asleep. I have insomnia some nights from the motion. I'm not having too many more bad nights. I have motion here and there but usually it quiets down when I lay down. Very rarely do I deal with insomnia anymore.
10. Each day I take _0-4 (9) pills & vitamins. (No comments, please) All new meds that I've recently started taking for other issues, such as my more recent diagnosis for bi-polar and anxiety.
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. I actually started all over again with trying new treatments this year, but mostly they made me feel worse.
12. If I had to choose between an invisible illness or visible I would choose: visible. same
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. I'm officially working full-time and I have been for the last couple of years! I still miss some days from work due to major flare-ups but I still try to do what I can to work
14. People would be surprised to know: I have anxiety standing around people, even those I know, even my own family. This is hard because I have become so much more open about what I'm thinking or feeling. I don't hide very much anymore.
15. The hardest thing to accept about my new reality has been: I can't do everything that I want to do. Fully accepting who I am now.
16. Something I never thought I could do with my illness that I did was: Travel again ....Drive, Work, Dance, Laugh even at my own expense.
17. The commercials about my illness: I haven't seen any. same
18. Something I really miss doing since I was diagnosed is: Driving ...I'm driving now! I'd have to say roller coasters. I've ridden them a little bit, but I used to be able to go from one to another and then repeat, but I'm lucky if I can do one.
19. It was really hard to have to give up: My job (have a job now!) but I think that was the hardest part of this since my diagnosis. Just losing different parts of what I thought made me who I was.
20. A new hobby I have taken up since my diagnosis is: Writing this blog :-) ...well, i've slacked on the blog, but I read A LOT, I do a handwritten journal, I paint
21. If I could have one day of feeling normal again I would: DRIVE! go boarding in the ocean!
22. My illness has taught me: Take each day one minute at time. It could be worse, It could be better, but this is what it is today.
23. Want to know a secret? One thing people say that gets under my skin is: Are you sure you can't work? I think the things that have been the worst is when people think it is all in your head or you use it as an excuse. That you're not really dealing with this invisible chaos.
24. But I love it when people: Have an open mind and ask questions without judgement. same
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. "Life isn't about waiting for the storm to pass. It's about learning how to dance in the rain."
26. When someone is diagnosed I’d like to tell them: You are not alone and its not all in your head. same, but to add, how can I help you cope?
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. same, but to add, realizing how much strength and courage I have to keep pushing myself through.
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. This is hard to answer now because it has been 5 years of people doing amazing things for me from driving me to doc appointments, therapies, buying things for me, running errands for me, helping with my kids when I couldn't, listening, making me laugh and the list goes on and on...
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.
I continue to promote exactly what I deal with on a daily basis. I don't hide my struggles. I ask for help, even if I really don't want to. I'm not ashamed of it. This is me and its part of life but it is not my entire life. I will be honest and say that I have had some really dark days, days of just ready to quit, but I didn't. My life isn't perfect, its far from it, but its my life and I'm going to live it to the best of my ability.
