I’ve been on some type of daily medication since I was 10 years old. The medicines and dosages have changed over the years, at times I was only on one or two, now I have to take about 18 pills a day. (I’m considering buying stock in CVS just because my family is basically keeping it afloat.)
One of the hardest parts about medicine is going through any type of meds changes. Even if it ends up being the best medication combo of your life, if you have a sensitive body (like mine) the adjustment period can be terrible. The time it takes your body to get used to new levels, new chemicals, is agonizing. And when your body is already in crisis mode and you need to go through a quick, aggressive change, your body responds to the change equally aggressively.
I’m undergoing some adjustments with my mood stabilizers and I’m also starting Midodrine which I’ve learned anecdotally can be like a miracle drug for some POTS patients. I’m learning that it might not be my miracle drug, but it could still be helpful.
This is one of my more frustrating meds changes because I’m getting one of the commonly talked about side effects—a tingling sensation in your head—but way more prominent for me is the fact that I’m cold 80% of the time, I feel like I have to pee every hour, and I get nauseated super easily; all of which were side effects not advertised to me.
I was born to withstand cold. I was conditioned to Chicago and Minneapolis winters in the first five years of my life as well as my mom’s proclivity to keep the thermostat at or below 70 degrees. I thrive on cool temperatures. So when my body starts shivering and saying any chill is uncomfortable, I start to worry.
The first day of Midodrine, I was surprised that I could feel anything at all. I usually chalk up any feelings to a placebo effect—the mind is a very powerful thing—but the side effects have lingered.
Being cold is frustrating (and confusing), but it’s not intolerable. Hot flashes would be intolerable. I probably would’ve stopped taking Midodrine after 72 hours if it was hot flashes. The cold means I get to wear extra layers and burrow into blankets. It means I get to keep my favorite jackets on and wear fuzzy socks. (Leah just got me brand new fuzzy fox socks for my birthday that I can’t wait to rock.)
I’m still optimistic though, because a lot of side effects fade away after the initial meds changing period. After about two weeks, the harshest side effects disappear or at least calm down and in their place are the benefits of the medicine.
So I’ll stay bundled in my blankets, a little more nauseated than normal, and I’ll let you all know how the Midodrine works out. And if it doesn’t work out, we’ll try another.
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.
Birthdays are so tricky. They’re supposed to be the best day of the year—where people celebrate you for just being—and you hopefully get showered with gifts and cakes.
But unfortunately, that means it’s a day filled with expectations that everything has to go well. And with chronic illnesses in play, that’s hard to guarantee.
I finally had the “It’s My Party and I Can Cry If I Want To” Epiphany when I turned 20. I had a ton of great events on the docket—I got to see one of my best friends for lunch in Williamsburg on my to Virginia Beach with my family. Unfortunately, that day I was hit by mood swings which turned into anxiety and I kept panicking, “no! I can’t be sad on my birthday!”
I kept trying the “fake it ’til you make it” approach at having the Best Birthday Ever but once I started getting a tension headache, it got to be too much.
I spent that birthday morose and quiet, upset that I was losing to my body. I was supposed to be happy and perky, but instead I was busy fighting my own feelings and the throbbing in my head.
And then, I finally remembered that I’m the birthday princess, and I get to do whatever I want. I call the shots. This could finally be the year of the grumpy, quiet birthday—something I’d never tried before.
Honestly, it kind of sucked to give in to the mood swings for a while. It sucked to stop fighting to keep them at bay and let them take over for a while. But it saved me a lot of energy. Having bad feelings is exhausting, but battling them when they’re in army gear is so much worse.
Birthdays since the great epiphany have been better informed—for the emotional side, don’t fight your feelings, they’ll probably pass a least a little bit when you have your birthday cake/cookie/brownie/ice cream/whatever. But the physical symptoms are harder to self-talk away, but you can certainly treat them the same way. And on your birthday, no one can truly begrudge you some full-scale drama queen “woe is me! pain on my birthday!” because guess what, you earned it. If that’s your personality, if that’s your style, go for it.
My big day this year started off great—my present to myself was going to be a Treat Yo Self day: sleep in, no exercise, no school work. Mom also surprised me with treats from Mom’s Apple Pie Company. I went through my usual routine but started feeling symptomatic and that led to feeling some heartbreak. I got nervous that it would continue throughout the day—what if I didn’t feel well enough to go out to dinner with my family that night? Thankfully, there’s nothing like fear of feeling unwell to get you to chug water and get your salt.
I rested, got such nice messages from friends (and my mom’s 4 billion Facebook friends), and TWO CAKES!!! And aside from the several pictures my mom insisted we take at dinner, I didn’t force any inauthentic feelings. So yes, I felt bummed and symptomatic for a while. But it was my birthday and tons of people texted and wrote on my wall and liked my mom’s photos of me to tell me they loved me, so there was plenty of time to feel important, too.
This was written last night at 1:30 a.m.
Erin, one of my very best friends in the world, came from Philadelphia to spend my pre-birthday weekend with me. We got breakfast–I had gigantic fluffy pancakes and Erin got a delicious looking omelette. We went shopping and discovered a crazy antique shop. (If you’re in the market for for some old political campaign memorabilia, I’ve got a store for you.) Then, we took on the task of a trip to Target (the seasonal section is having an identity crisis right now–a battle between Halloween and Christmas) and I thought I was going to lean over against a shelf of towels and fall asleep.
Every moment, standing upright, it was like I could feel gravity’s pull on every molecule in my body. -9.8 m/s^2, right? That’s the pull of gravity on Earth? Even though I remember next to nothing from Physics, next to nothing about the practical application of it, all I could think of was, “Yep. -9.8 m/s^2 of gravity is pulling on all of me, but it feels like more.” But at the same time, I was enjoying myself. I loved being out of the house. I loved being with Erin. Maybe I could just ignore the gravity away, because there’s no way I was succumbing to it.
We reenergized with hot chocolate and a break at my house before venturing back out for the main event–seeing Hasan Minhaj (from The Daily Show) do stand-up in Arlington. I laughed loudly and shamelessly. It was absolutely spectacular.
We got home, exhausted and spent. It’s pretty validating seeing a non-POTSie tired from doing the same things you do.
But in the hours since, it feels like every muscle in my limbs has started aching. And not those dull, throbbing aches, it’s the sharp and constant aches. The ones that are loud. The ones that say, “Hey!!! We’re still here! You’ve done all of your easy fixes, but we’re not leaving!” And your only option is to get as comfortable as you can because you just have to ride it out.
These are the ones that make it difficult to sleep. These are the ones that the term “painsomnia” was invented for. (High five to the person who first coined it.) Instead of fighting against gravity like I was this afternoon, I’m fighting against muscles that ache, limbs that are fidgety, a head that hurts, and a heart that feels stressed. And there’s also confusion–because I had such a lovely day with pain that I endured–and now the pain feels like it’s too heavy. Gravity and heaviness wins this time, but at least I made it this long.
I’m going to try to rest now. Because no matter how much my arms and legs hurt, it doesn’t take away how good my pancakes were, how hilarious Hasan Minhaj was, and how good it is to have a friend come visit you for your birthday.
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: