The Journey of 10,000 Steps

You guys.

I got a FitBit.

I know, I know, as per usual, I am 100 years late to this trend. When I try to tell people how awesome it is to be able to track my steps and my sleep and my food and my heart rate all at the same time, they are like, “Yep, yes, uh-huh, welcome to 2013, you are only 4 years late.”


I am very excited.

First of all, I didn’t have to spend a gagillion dollars on the special EKG heart rate monitor for your iPhone something-or-other that my cardiologist wanted me to get because the FitBit Charge 2 that I have shows you your heart rate stats from throughout the day.



Short digression: Um, wow? Hey peaks and valleys and reasons that everything feels screwy right now! I guess I am naturally pre-dispositioned to be in “fat burn” mode for the majority of my day. I should create an infomercial…No exercise required, all you need is a life-consuming chronic illness and you too can burn fat all day long! Or something…

PS: Super nice that my resting heart rate is 81; sucks I am apparently never resting though. #POTSyLife


Back to the story.

I had no idea how much I don’t move.

Like, ok, I had an idea.

Because you know, my futon couch has a permanent impression of where I park myself every day.

But really.

I had no idea.

Once upon a time, a long, long time ago when I was much, much worse (like 2009-ish), I bought a cheap plastic pedometer from Target for $5 and it told me that in the course of my POTSy day, I moved 250 steps. That’s it. I thought it was broken. But really, 250 steps is roughly the equivalent of 2 trips downstairs for food and a half dozen bathroom visits. Which is kind of all I did in 2009.

I figured that by now, in 2017, I am so much better that the 10,000 recommended steps that I, as an American citizen, am strongly urged to get by the Powers That Be and Numerous Celebrity Fitness Trainers, would be No Big Deal.

Um, yes, well, about that.

2015 Me would be all over it. 2015 Me was running all the time and was a mover and a shaker, as the kids say (or did in 1975…).

2017 Me got a bit dejected as my FitBit proudly announced that on an average day without me going out of the way to exercise or move much (so, like every-ish day right now) my grand total of steps was just over 2,000.


Before I had actually used my FitBit to track anything, I had set my goal for steps at 7,500. I figured that was a safe estimate for days when I felt a bit rough and wasn’t up to knocking out those easy 10,000.



Sometimes you just have to laugh at your own very grave miscalculations, you know?

This is my second full week of tracking, and the steps are easier to get because now I am paying So Much Attention to it, which clearly I needed to be doing. I like that my wrist buzzes to remind me to move around if I haven’t made 250 steps in the current hour. Though it does get annoying when it interrupts my daily nap(s), of which I am taking fewer, if only because it is hard to fall asleep when your brain is all, “You could totally be marching in place right now.” I’ve come to find that my brain lights up just as much as my wrist does when I meet my step goal and my FitBit buzzes and throws me a tiny virtual parade, so you know, incentive.

I’ve even made it to 10,000 steps. Twice.

*Hey Chronic Friends, do you know me in real life? Be my FitBit friend! You know, if that’s still a thing…



Spring Break

Chronic readers, I have not been feeling well. I didn’t post on Thursday, but I figured I’d feel better by today, Tuesday, and I’d make up for it.

But I really don’t feel better.

Ok, so yeah, what else is new, right?

It’s a tricky thing to try and determine if this particular I don’t feel well is different than your average, everyday, run-of-the-mill I don’t feel well. So my body is trying to be helpful and let me know the difference, mostly by multiplying the yuck times 100 so it’s super obvious that this is most definitely a flare-up.

I haven’t been sleeping. In its quest to adjust to the Springtime change in temperature, my body has decided that extremes are the best way to go. I go to bed at a relatively normal temperature, only to wake up a few hours later so hot my brain feels like it’s boiling, and my skin is covered in an itchy red heat rash. I have a fan, have given up on blankets and sheets, and our house is a normal temperature. But, I have to get up, run washcloths under the cold tap, and put them all over me when I go back to bed. My feet are red and swollen, so I stand for an extra minute on the tile bathroom floor, moving from space to space as the heat transfers from me to the floor, in an effort to find a cool spot. All that standing added to the fact that I don’t take meds every 3 hours at night the way I do during the day means that my heart will start to pound, and so I go back to bed, stare at the ceiling, biofeedback breathing and covered in wet, now lukewarm washcloths, for an hour or so before I can fall fitfully to sleep.

Because of this, I’ve been having trouble getting up in the morning. I have alarms set so that I can get up and eat breakfast and start medicating (every 3 hours with occasional additions, 8am to 9pm, my phone rings every. single. day.) I have medical transcriptionist training and exercise to be doing; projects like transferring home movies to DVD and keeping up with my sewing and blogging all wait for my attention. Suki really, really wants to go out. Like now.

But I don’t want to do any of it. When I tell myself it’s time to sit, my body wants to move around. When I tell myself it’s time to run, my body just wants to crawl back into bed.

All of my days are running into each other, and while I know today is Tuesday, I can’t believe that it is already the 21st of April. I was going to send my friends Easter cards. I have the package on my desk next to my computer with a sticky note that says “WRITE AND SEND THESE” but I never followed my own instructions.


If I usually send you cards, this was supposed to be in your mailbox 2 weeks ago. Happy Easter!


This past weekend, my stomach symptoms were so severe that I lost 3 pounds. I still tried to get to Target in time to buy a $40 Lilly Pulitzer dress, but they were all sold out even though I got there super early. I felt like the universe should have given me that one. I mean, I’m trying to function through the pain and all. #GimmeAChronicBreak


I should be so Resort Ready.


When I am lying in bed staring at my ceiling (#ChronicConfinement), I think a lot. I think how weird it is to be able to feel your own heart, to be able to feel where in your body your blood is moving and where it is not. I think about how I hate that this keeps happening, where I lose chunks of time, days-weeks-months, because of “flare-ups” or symptomatic times. I try to remind myself that it is not as bad as it used to be, that I am still managing to get dressed every day and keep working on my transcribing course even though I now move at a glacial pace. I even managed to keep running, until this weekend when those epic stomach symptoms took over.

Then I think about how I really cannot think about this one more second, and so I think about Val Chmerkovskiy and Dancing with the Stars instead.


“Of course I’d love to dance with you once you feel up to it!”



I feel like it would be really easy to swap my face with Rumer Willis in this photo…if only I knew how to Photoshop…


There is no good way to deal with a flare-up. In the past, I have tried fighting it (bad idea-it always wins), have tried changing all my medications and my whole daytime routine in effort to find the tiny thing that set me off, and so on. None of that is beneficial, which is a HUGE BUMMER.

No, the best thing to do is Nothing. Which is way harder than you think it is.

I’m doing my best to go about my business, and keep on keeping on like everything is normal, and will pick up my pieces as needed as they fall around me. It kind of sucks.

Because of this, I’ve decided to go on Spring Break from blogging. I’ll be back in May, but I’m calling it and taking the end of April off. The hope is that 2 weeks will be enough for my system to regulate and find its new normal.