My 30 Things Meme

So, over at invisible illness week, the challenge is to do a 30 things meme. In case you are new here, here is a cliff notes version about me:

Image description: A young, female presenting person wearing a purple shirt and a brown hat. She is planting a kiss on a very grumpy golden brown tabby.

Image description: A young, female presenting person wearing a purple shirt and a brown hat. She is planting a kiss on a very grumpy golden brown tabby.

I’m Nora, 28, and I live in Minnesota. I have over two dozen medical disorders and I’m currently on leave from college as a result.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Well, as I said, I have over two dozen medical DXs. But for this purpose, I’m going to write about dysautonomia.
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: 2005
4. The biggest adjustment I’ve had to make is: Learning to understand my limits. I mean, I’ve been disabled since birth but with the dysautonomia stuff started, I had to learn to quickly sit down when I get dizzy, to eat a high salt diet, and to realize that sometimes I just can’t do what I want no matter how careful I am. That’s my life.
5. Most people assume: That I am lazy on days when I use my wheelchair, even though the reality is my heart can’t handle my walking that day.
6. The hardest part about mornings are: Leaving my warm, cozy, blanket/pillow/and stuffed animal nest. It’s really quite impressive how cozy and stuffed full of stuff it is.
7. My favorite medical TV show is: Either House or Scrubs. Depends if I want stuff to be heavier on the comedy side or the serious side.
8. A gadget I couldn’t live without is: My blood pressure cuff. It has saved my butt more than once.
9. The hardest part about nights are: The pain and loneliness.
10. Each day I take __ pills & vitamins. (No comments, please): 30
11. Regarding alternative treatments I: To each their own. For some people, they’re great. For others, they’re hogwash. You do you and what works for you.
12. If I had to choose between an invisible illness or visible I would choose: I have both.  Both have their problems and benefits. I really cannot choose.
13. Regarding working and career: I can’t.
14. People would be surprised to know: That I often cry myself to sleep at night.
15. The hardest thing to accept about my new reality has been: How easy it is to slip into POTS-Y mode and wind up a Nora puddle on the floor.
16. Something I never thought I could do with my illness that I did was: Go to Australia!
17. The commercials about my illness: I don’t have cable. I don’t know.
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up: My dreams and my college goals.
20. A new hobby I have taken up since my diagnosis is: Way more video games.
21. If I could have one day of feeling normal again I would: I don’t know. I’ve never known normal.
22. My illness has taught me: That no cure does not mean no hope.
23. Want to know a secret? One thing people say that gets under my skin is: “I couldn’t do what you do.”
24. But I love it when people: Sit on the floor with me when I’m a Nora-puddle.
25. My favorite motto, scripture, quote that gets me through tough times is: “Strength for today, and bright hope for tomorrow.”
26. When someone is diagnosed I’d like to tell them: “It’s hard. It’s a new reality. But with time, you learn to cope and adjust and accept your new normal.”
27. Something that has surprised me about living with an illness is: Just how resilient I am.
28. The nicest thing someone did for me when I wasn’t feeling well was: Sitting in the ER with me listening to me crack lame jokes.
29. I’m involved with Invisible Illness Week because: Awareness is good.
30. The fact that you read this list makes me feel: Like you must have been hella board with nothing better to do. 😛

Chronic Illness and Invisible Illness

 

Image description: the back of a blue T-shirt with stick figures. Most of them are standing, but Stick Dude in the middle is passed out. Text reads "It's an invisible disease... until you're passed out on the floor."

Image description: the back of a blue T-shirt with stick figures. Most of them are standing, but Stick Dude in the middle is passed out. Text reads “It’s an invisible disease… until you’re passed out on the floor.”

What I was sitting down to write was to share my chicken noodle soup recipe. That’ll come later, don’t worry. But what happened instead was another post. So is the life of a spoonie blogger. Such is the life of ADHD. 😉 Wait, what was I saying?

Anyway. Many of my disabilities are visible. I switch between a walker and crutches, and rarely a wheelchair. But I do have several invisible ones. One of the worst ones, for me, is dysautonomia.

What is dysautonomia, you ask? That’s an awfully big word. Let’s break it down! Upside inside out, living la vita dysautonomia! Yeah. That.  Here’s a helpful link telling what it is in oh so awesome medical terms. Yay!

What does it mean in Nora terms? Well, it means my blood pressure often runs dangerously low.  Numbers like 84/50? Perfectly normal, for me (Note: MAY NOT BE NORMAL FOR YOU. If you do not have a medical care team or a DX, please seek help if your blood pressure drops that low! Dat’s low. Dat’s bad. Any who). My heart rate runs super high – 120 at baseline? Not unheard of (again, please seek medical advice if this is not your norm.) Wanna know what happens when low blood pressure and high heart rate combine? You pass out. It’s happened at home. It’s happened at friend’s homes. It’s happened in the Target check out line. It’s happened many places. It’s part of the reason I use mobility aids, though by far not the only one.

I can’t treat it. In my case, the medications to treat it would not play nice with my asthma meds, so they aren’t an option. I have to have a high salt diet, in a feeble attempt to keep my blood pressure up. It doesn’t work well, but, well, I like salt so at least I don’t have to feel bad for ingesting so much? 😉

This is one of my invisible illnesses. This is one of the ones that gets me called lazy when I take elevators or refuse to take stairs. When I have to suddenly sit down. When I have to use the electric scooter at Target or Walmart. This is the one that gets me stares and judgement. Because, after all, I shouldn’t need those things, right?

It may be invisible. But it doesn’t mean it’s not hurting me and it doesn’t gravely affect my life.