I’ve seen this survey floating around tumblr for Invisible Illness Week and I figured why not!
1. The name of the invisible illness with which I live :
Ehlers Danlos Syndrome, POTS, and I was also born with dextro-Transposition of the Great Arteries, a congenital heart defect.
2. I was diagnosed with it in the year :
POTS - 2006 and EDS - 2007.
3. But I had symptoms since :
I can remember, but they really escalated in 2003, when I was in 10th grade.
4. The biggest adjustment I’ve had to make is :
Slowing down. I used to be extremely active. I barely slowed down. Now I can’t do much. Adjusting mentally has been very difficult too. My sense of self-worth has gone down.
5. Most people assume :
I’m lazy and using excuses. People have told me I take the easy way out by taking so many medications.
6. The hardest part about the mornings are :
Everything haha! I am not a morning person and I love my sleep. Waking up without meds in my system can be hell. My pain is pretty high in the mornings and I wake up with migraines.
7. My favourite medical TV show is :
I really don’t watch fiction medical shows, but I love Mystery Diagnosis.
8. A gadget I couldn’t live without is :
My computer and phone. Texting helps me communicate with my dad and cousin who have EDS too.
9. The hardest part about the nights are :
Falling asleep isn’t too bad. I take some fantastic sleeping and anti muscle spasm meds. Staying awake is another story. I get wicked muscle spasms and my legs hurt so bad. I usually kick my fiance in my sleep at least one a night.
10. Each day I take __ pills and vitamins :
I haven’t counted lately. My records been 27, but that was quite some time ago and I’ve come off a lot. Probably 15.
11. Regarding alternative treatments I :
Have tried some crazy, crazy things in the past, before I was diagnosed. Looking back I have no idea how I was sucked into trying somethings. Now I swear by going to the chiropractor and getting massage. That shit’s magical!
12. If I had to choose between an invisible illness of visible I would choose :
I’m not sure. I wouldn’t switch what I have. I am used to EDS and POTS. I can handle them. But it would be nice to have my illnesses taken more seriously by some.
13. Regarding work and career :
Ugh. I am in school right now for social work and I love it. But I can only handle going part time. I want to be able to work and be a contributing member of society, but I don’t know how my body would handle it. And insurance is a whole other issue. I have SSI insurance I wouldn’t be able to afford any of my meds without it. My meds are what enable me to function. If I would I lose my meds.
14. People would be surprised to know :
How exhausted I am all of the time!
15. The hardest thing I had to accept was :
That this is how it is. Nothing is really going to change.
16. Something I never thought I could do with my illness was :
I’m not really sure. Continue to be in school.
17. The commercials about my illness :
18. Something I really miss doing since I was diagnosed is :
Being so active. Having an active social life. Going to school full time.
19. A new hobby I have taken up since diagnosis :
I read more then ever.
20. My Illness has taught me :
To never give up!
21. One thing people say that gets under my skin :
“But you don’t look sick,” haha.
22. But I love it when people :
Want to learn about the illnesses I have. I also like when people don’t focus on my health or can joke about it with me, in a non rude way
23. My favortie motto is :
I don’t have one really. I love the songs “There, There Katie” and “Swim” by Jack’s Mannequin. I’ve been saying “just keep swimming,” a lot lately.
24. When someone is diagnosed I’d like to tell them :
You’ll be ok. You’ll adjust. It’s scary and confusing but it gets better. Surround yourself with people that love and accept you. Meet people with the same illnesses. The internet is a great place for that. Keep learning. And, most importantly, do not give up! It’s ok to not always be strong, but never fully give up.
25. Something that has surprised me about living with an illness is:
How much you learn to appreciate things.
26. The nicest thing someone did for me when I wasn’t feeling well was:
I’m lucky that I have amazing people in my life that are always willing to help. Matt will clean our apartment or do the dishes. He’s my shoulder to cry on. My mom will cook with me and do my pill box. So many people are willing to listen. I am surrounded by incredible people.
I’m involved with Invisible Illness Week because :
I have invisible illnesses and I know so many that do too. This is who I am.
My Invisible Illness Week survey!
Matt’s sister and brother-in-law just had a baby girl named Danielle Marie. I cannot wait to officially be an Aunt!
For days I’m not too excited to be up and functioning, my spoon necklace. #spoonie (Taken with Instagram)
Having to talk to you geneticist about having kids and being told that they found the genes that caused your heart defect. That you may pass on something deadly. That you may not even have Ehlers Danlos like they thought. It may be something else. What if it’s something worse?
We’re not even ready for kids now, but still…
After a week at Disney and a few days in Baltimore my body’s had enough. I feel like crap. I can’t keep going like this anymore.