I haven’t done a post about POTS (postural orthostatic tachycardia syndrome) in awhile, and this post has been sitting in my drafts folder for a few weeks, so I thought I’d post it today!
As I type this I’m in the middle of a rough POTS moment, and while I’ve written some about POTS, it’s rarely in the middle of rough times… so here it goes:
One thing I haven’t really talked about with POTS is the extreme loss of energy that those with the diagnosis can suffer. It’s crazy, it’s unpredictable, and it can switch in an instant… and it just happened to me two hours ago.
Earlier today it started with my eyes struggling to focus at moments, which lead to a migraine an hour later. By the time dinner hit (I had a picnic at work) I was feeling a little sick and my heart rate had picked up. By the time I got home from work, I was feeling weak, and all I wanted to do was be on the couch. It’s frustrating how quickly things can change when I felt just fine this morning.
There are two ways I know to describe what this loss of energy is like: imagine with me for a minute that someone has attached something to you that sucks away every ounce of energy from you, leaving you feeling limp. Then imagine that someone has strapped on weights to all your appendages, and is expecting you to carry on with life. Does that feel impossible, because it certainly does if you have POTS. Add some aching that feels worse than the flu, and that’s the best way I know to describe how I feel.
All I want to do is lay motionless (right now I am on my back with my computer on my lap and barely moving to type, and even that feels overwhelming. Even just laying completely still I’m in pain, aching. It all happens so quickly. It may be over in half an hour, it may be over tomorrow, or it may take a few days. That’s life with POTS. And it’s frustrating.
Moments like this feel almost impossible. I want to cry because the pain gets to be so great- it hurts to have such little energy. In panicky moments I worry that it will be this way always- and then of course I remember that these moments pass.
I post a little about my diagnosis, but I think what people see is someone who lives a very busy life, bikes a lot, runs races, etc… and it looks like POTS doesn’t impact my life too much. I try to keep things upbeat around here. But in reality these moments also happen on a regular basis- I just don’t share them, but they deeply impact my life.
So I thought it would be honest- that in my vulnerability those of you with POTS might find connection- to know that you aren’t alone in these feelings, and that those of you who have never had a chronic or invisible illness might have a better way to understand. From the outside it’s easy to look like I’m exaggerating or making something up- no one can see how I feel. All I know is that it’s my reality.
For more information on POTS, check out my POTS page.