I went to a spin class yesterday.
post workout bubble gum, zengo style
And for all of those who know me and my distaste for intensive exercise, I say to you, RIGHT?
I’m undergoing a bunch of meds changes and I went to a spin class.
And I’ll be feeling the effects for quite some time now.
But it was for several good reasons:
- I got to be surrounded good people
- it was a fundraiser for Dysautonomia International
- I now get to say “yeah, I’ve taken a spin class before”
My current exercise routine is pretty basic: six days a week, I get on my recumbent bicycle and cycle for a designated amount of time while watching late night television. And every week, I up the amount of time by a minute. Yesterday was the 20 minute mark.
The class itself was 45 minutes, so for the half I couldn’t exercise, I was hanging out on the bike, wiping my forehead with the towel, rehydrating, and watching in awe at everyone’s energy. I was also playing the “see if I can balance on this seat without holding on” game—I’m proud to say that I won this round and I don’t know if I should tempt fate ever again. The stakes were too high.
It was a great environment—tons of energy, tons of positive reinforcement, lots of “no one is judging you!” which is one of my favorite types of statements. Normally when I exercise I like to either be alone or I imagine myself in a Harry Potter invisibility cloak. As it turns out, a spin class with the music booming and the lights off offers the same kind of effect.
I never imagined that this type of thing would be possible for me. Again, I completely tailored it to work for me, but that’s really what life with dysautonomia is about—making the things around you work for you because your body can’t do that for you all the time. Mine was such a Spin Class Lite experience, (most everyone else did the real deal), but I STILL DID IT, and I’m still going to be feeling the burn with every step probably for a few more days. (And the burn is so real.)
Huge thanks to Elyse Schwartz for organizing the event (all huge thanks to her for being an all around superstar human being) and a huge thanks to everyone there for being kind and supportive. It’s a good rule of thumb that you’re bound to run into superior humans at dysautonomia events.
Along with it being Dysautonomia Awareness Month, it’s also the middle of Invisible Illness Week.
Invisible Illness Week has a fabulous meme, 30 Things About My Invisible Illness You May Not Know. And because I miss the days of MySpace and Facebook surveys, I filled it out focusing on dysautonomia, despite having what feels like close to 30 of my own Invisible Illnesses.
If you’ve done the 30 Things survey, leave your link in the comments!
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Postural Orthostatic Tachycardia Syndrome (dysautonomia)
2. I was diagnosed with it in the year: 2013
3. But I had symptoms since: 2003
4. The biggest adjustment I’ve had to make is: Totally changing the way I think, approach things… and I EXERCISE NOW!
5. Most people assume: That if I look fine, I feel fine? I don’t actually know. However, when I’m with friends, I often have to ask them to slow down walking and to take breaks with me. I think people also don’t realize that even on my best days, I’m masking a few symptoms.
6. The hardest part about mornings are: Not hitting the snooze button and dealing with dizziness
7. My favorite medical TV show is: The Mindy Project (is that medical enough?)
8. A gadget I couldn’t live without is: Please don’t make me choose between my phone and computer, I love them both so much.
9. The hardest part about nights are: Keeping hopeless thoughts at bay when painsomnia hits
10. Each day I take __ pills & vitamins. 15 mandatory, 3 as needed
11. Regarding alternative treatments: I think people should do what works for them—we’re all experts on our own bodies and on no one else’s.
12. If I had to choose between an invisible illness or visible I would choose: Invisible, what I have now—I don’t know what a visible illness is like, aside from wearing glasses for bad vision which feels pretty normal. I feel like I have more control over my life and my story this way, and people will generally believe you when you say “I’m going to be sick to my stomach,” invisible illness or not. (#protip)
13. Regarding working and career: I really want a career once I figure out what I’m good at. A psychic once told me I’d own my own business or be my own boss and that it’d happen before I’m 30 and then asked me for help with her iPhone. My #1 priority in life is having health care, so we’ll see how that works into my career goals.
14. People would be surprised to know: I tend to tell people everything, there’s not much mystery in my life (case in point this blog). Maybe that I didn’t learn how to take pills until I was prescribed them at age 10/11.
15. The hardest thing to accept about my new reality has been: That there’s no going back now.
16. Something I never thought I could do with my illness that I did was: Force myself to exercise.
17. The commercials about my illness: Don’t exist yet.
18. Something I really miss doing since I was diagnosed is: I miss my old job sometimes–I went on medical leave when I got a series of flareups and decided to officially leave when I was diagnosed and knew that standing all day just wouldn’t be a good health decision for me.
19. It was really hard to have to give up: the idea of missing out on some rites of passage—thankfully I found some ways to work it out. 🙂
20. A new hobby I have taken up since my diagnosis is: Facebook stalking POTS friends, window shopping on Etsy for Awareness jewelry (especially zebra bracelets)
21. If I could have one day of feeling normal again I would: go to a concert and see what it feels like to stand for an extended period of time as a normal person, run as far as I could just to see what it’s like
22. My illness has taught me: how to entertain myself in the waiting room at various doctor’s offices
23. Want to know a secret? One thing people say that gets under my skin is: when people tell me that I’ll like exercise one day and that the endorphins will kick in. I’m never going to like exercise. I have never felt endorphins in my entire life.
24. But I love it when people: validate me. Tell me, “yeah, that sucks!” and send me pictures of koalas, the dreamboat musicians from Jukebox the Ghost, and also remind me that everything’s going to be ok.
25. My favorite motto, scripture, quote that gets me through tough times is: “You got this.”
26. When someone is diagnosed I’d like to tell them: “Oh my gosh this SUCKS but you aren’t alone! You can do this and let me hug you and now you get to eat all the chips you want!”
27. Something that has surprised me about living with an illness is: for me, it became another member of the family. My parents sometimes discuss my doctor’s appointments with each other like I’m not even in the room.
28. The nicest thing someone did for me when I wasn’t feeling well was: bring me food and check up on me. Making meals is so exhausting during a flareup and having meals made for you (or even microwaved for you) when every bone in your body is aching is such a luxury.
29. I’m involved with Invisible Illness Week because: There are SO. MANY. INVISIBLE ILLNESSES. (All of my illnesses are!) Coming forward and saying “I have an invisible illness” can put yourself at the scrutiny of others as they wrinkle their brows and say “prove it.” But there’s safety in numbers. We’re like a giant phalanx of experiences and stories. (Sorry. I just had the phalanx imagery going on in my mind today.)
30. The fact that you read this list makes me feel:
How do you even write the first entry for a blog?
Goals? Mission statement? Two truths and a lie?
I originally wanted to start a blog because a bunch of adults* asked me “so, do you a have a blog?” this summer when I talked about possible future career goals and my experience with dysautonomia/POTS. (*I know that I’m “technically” an adult, but these were real adults, with their own health insurance plans, 401Ks and wills.) The idea resonated with me and I couldn’t shake it.
As far as other goals, they’re pretty standard (and yes, why not share my hopes and dreams with you?)—
- to reaffirm a million times to anyone with dysautonomia that their experiences are real and valid
- to give people without dysautonomia a glimpse into what life is like when their autonomic nervous systems goes haywire
- to give me yet another place to work out some of my feelings because writing is a good time
- to be another voice to raise awareness about dysautonomia
- to share as many cool water bottles, salt shakers, pill containers, and any other cool dysautonomia gear items as I can find
And one day, if I’m lucky, maybe I can make this as powerful and glamorous as Stephen Colbert’s lifestyle brand, Covetton House.
With goals out of the way—you can read my overly comprehensive diagnosis story, see pictures of my dogs on my about me page, and follow me on Twitter for random musings and blog updates.
So let’s get vulnerable! Let’s share stories! Let’s barrel through the stigma, head first, even though it’s scary. Let’s have as much fun as possible. And thanks but no thanks, dysautonomia.
Oh, and most importantly!
Happy Dysautonomia Awareness Month!