One Spoon at a Time: My POTS Journal

I’ve been meaning to do this for a while–to start a blog about having dysautonomia (or more specifically, the form I have, known as POTS). But you know how anxiety is; it keeps us from doing what we want sometimes. What exactly am I anxious about? Maybe it’s the idea of people reading about what I have to say about my chronic illness. Maybe it’s the idea of people not reading it. Maybe it’s the discomfort I feel about having to face these things in the moments that I write. Honestly, it’s probably a bit of all of those things, rolled so tightly together that it’s tough to unwind them. So I’ll just do my best to dive right in; like swimming, this may be easier than working my way up to it slowly.

My name is Angela. If you were to see me on the street, I’d look just like a regular, healthy 28-year old to you. The thing is, I don’t look sick–many of us with dysautonomia don’t. Aside from being perpetually on the pale side, I appear perfectly normal. I can walk unassisted and do most of the things that healthy people can–at least for a while, on good days. But what you won’t see when you look at me is the war that is constantly raging in my body. To do these “normal” things like driving, grocery shopping, taking a walk, or even eating, my body has to put in a lot of extra effort. My heart has to work four times harder than that of someone without this condition.

So that must mean that I have a weak heart, right? Actually, it’s the opposite. My doctors have even compared it to the heart of a marathon runner. It’s strong and is capable of almost making up for what is wrong with my body. That brings me to this: what is dysautonomia? Let’s take the word apart for a minute. You pronounce it like “dis-auto-gnome-ee-uh,” but it has nothing to do with cars or small garden fellows. It is a dysfunction of the autonomous nervous system. This means that my autonomous nervous system–the thing that is supposed to handle all the little unconscious tasks your body carries out–like regulating temperature, circulation, breathing, and digestion–doesn’t exactly work right. This leads to a myriad of issues that manifest at somewhat random: nausea, dizziness, fatigue, lightheadedness, brainfog, leg cramps, bowel issues, overheating, and exercise intolerance, to name a few. I say they are somewhat random because what can cause a bad day one day may not bother me the next. All I can do is try to get enough sleep, eat enough salt (to elevate my blood pressure and help with circulation), get a moderate amount of exercise without overdoing it, and try to live a flexible life. Oh, and take a LOT of medications. Since I was diagnosed in 2011, I’ve taken 10-15ish pills a day to help me manage my illness. My doctor and I are always altering the cocktail somewhat to try new things and adapt to life, but it tends to linger in that range.

So why am I sharing all this? Well, for one thing I want to educate people. There are plenty of people out there who seem to think that having an invisible illness means that you are perfectly healthy and that it’s all in your head, or that because you look fine you aren’t entitled to all of the aid that a more visibly disabled person is (like handicapped parking or motorized scooters in grocery stores). I want to kindly inform those people, because I know they really do mean well. I also want to teach friends and family who love someone with dysautonomia (or any chronic illness) a little about what they are going through. Perhaps one of the biggest reasons I’m writing this is to educate others with this condition–those who are diagnosed and undiagnosed. I want to let those who have their diagnosis know they are not alone in this, and I want those who are seeking a diagnosis to have a little insight into the condition. I went over a decade before I was diagnosed, and I never want anyone else to suffer through that. Knowledge is power–a cliche, but true. Last, I think I want to use this blog to remind myself that it’s okay to experience things a little differently than a perfectly healthy person would. Sometimes we all need a little self-validation. Snuggles with my fiance and cat can only do so much, after all.

So, before I give my fingers (and your eyes) a little rest, let me say a couple of quick things about this blog. I don’t plan to use this as a daily journal, so my writing may be sporadic. Sometimes I may write a few entries at once or skip a large period of time. But I want to keep writing, about whatever seems important to me at the time. I want to share my struggles and triumphs with anyone who will listen and to my future self when I look back at all this. To those who choose to join me on this journey, thank you!