In honor of Invisible Disability Awareness week I have completed "30 things about my invisible disabiltiy you may not know"!! It's lengthy but had some really cool questions! You should fill it out too whether you have an invisible or visible disability! I'd love to read what others have to say.
1. The illness I live with is: An Unknown Progressive Autonomic Disorder, Postural Orostatic Tachycardia Syndrome, Migraines, and Autonomic and Peripheral Sensory Neuropathy
2. I was diagnosed with it in the year: Autonomic Disorder: found in 2007, still working on a diagnosis POTS: found in 2005, diagnosed in 2014 Migraines: diagnosed in 2006 Peripheral Neuropathy: 2007
3. But I had symptoms since: 2005
4. The biggest adjustment I’ve had to make is: learning when to take a day off and rest
5. Most people assume: I'm perfectly "normal" because I don't show symptoms and I'm very mobile and involved.
6. The hardest part about mornings are: aside from hearing that oh so annoying alarm, showers are just a struggle in general. The heat and water and if I dare have to shave and go from standing to bending to standing to bending...it's just a struggle.
7. My favorite medical TV show is: HOUSE!!! I need a House...
8. A gadget I couldn’t live without is: my heart rate monitor on my phone. And very soon my service dog, Zido.
9. The hardest part about nights are: when my toes start to tingle as I'm going to sleep. it's the only time I can feel my feet and it is so annoying!!
10. Each day I take: 2 pills at night, Motrin through out a headache day, and a monthly shot of B12
11. Regarding alternative treatments I: would be a fan if there was ever one that actually worked...
12. If I had to choose between an invisible illness or visible I would choose: Is "neither" an option?
13. Regarding working and career: I love that now that I will have Zido in my life, really anything is an option! I want to work for a company that saves human trafficking victims, and now I have nothing to hold me back!
14. People would be surprised to know: that even though I can't feel my feet, I still know you're touching them under the table because I can see you staring at me to see if you get a reaction from me. It's creepy. Just stop.
15. The hardest thing to accept about my new reality has been: realizing that I can't do everything. I need to rest and I shouldn't feel bad about doing it. Also, the fact that it will never go away and that there is a chance I will never have a name for it...
16. Something I never thought I could do with my illness that I did was: open up about it and be brave enough to apply for a service dog!!
17. The commercials about my illness: just don't exist.
18. Something I really miss doing since I was diagnosed is: running. I just miss running.
19. It was really hard to have to give up: being able to stay up late with my friends or for homework. I take medicine at night for my migraines that completely knocks me out. While I can fight it sometimes, I always wake up feeling like crap the next morning.
20. A new hobby I have taken up since my diagnosis is: blogging!! It's awesome to be able to open up and share what I'm going through to a crowd of people that are so accepting!
21. If I could have one day of feeling normal again I would: run like there was no tomorrow.
22. My illness has taught me: that just because something is wrong with you, it doesn't mean you've done something wrong. I've learned that God has given me this because (for whatever reason) He thinks I'm strong enough to handle it and He wants me to DO something with it.
23. Want to know a secret? One thing people say that gets under my skin is: "at least it's not fatal". Yes I understand it's not fatal, but you know what could be? If I lose consciousness in a street or when I'm alone and I stop breathing (which that whole not breathing thing happens almost every time I go out)
24. But I love it when people: understand. And if they don't understand, they ask INTELLIGENT questions.
25. My favorite motto, scripture, quote that gets me through tough times is: "I have told you these things so that you may have peace. In this world you will have troubles, but take heart! I have overcome the world!" John 16:33 (it's literally tattooed on my wrist)
26. When someone is diagnosed I’d like to tell them: "You too?!! Let's get dinner and chat!!!"
27. Something that has surprised me about living with an illness is: how accepting people are when you're brave enough to open up about it.
28. The nicest thing someone did for me when I wasn’t feeling well was: when my boyfriend and church family talked calmly to me and helped me when I passed out. I can hear when I'm unconscious, and it means so much when people are calm because if YOU sound nervous, my mind tells me that it's not safe to wake up.
29. I’m involved with Invisible Illness Week because: it's part of who I am and I want to spread awareness!
30. The fact that you read this list makes me feel: vulnerable but excited that I could share this part of my life with you :)
