The Mental Exhaustion of Chronic Illness

I’ve found that there are a lot of things that I have to keep track of every day that a healthy person does not usually think about at all. Constantly monitoring all these things can be mentally exhausting. One of my primary diagnoses is Postural Orthostatic Tachycardia Syndrome or POTS for short. POTS is an autonomic nervous system disorder. Your autonomic nervous system controls all the things you don’t normally have to think about, so when it malfunctions some of those things don’t work right.

One thing I am always thinking about is my blood pressure. Due to my POTS I have to make sure to flex my leg muscles for 5-10 seconds before I stand up in order to pump the blood up to my brain so I don’t get light headed or pass out. I also sometimes start to feel weird or light headed when I am sitting up for a long time so I’m always pumping and flexing my leg muscles to counteract that. For instance when I’m driving I’m always dancing to music because the movement keeps the blood flowing better than sitting still. When I was first diagnosed I wore a chest strap heart monitor often and when driving my resting heart rate would be around 90 bpm. When I started dancing to the music it actually dropped to around 80 bpm. So weirdly I can actually conserve energy while driving by dancing or fidgeting rather than sitting still.

I have to constantly be monitoring my heart rate, partly as a clue to my blood pressure and partly to keep my asthma under control. In regards to the blood pressure, my heart rate increases when my blood pressure drops. In this way I can get clues about what my blood pressure is doing without having to carry around a BP cuff (been there, done that). The asthma only really kicks in when I’m exercising or if I’m walking up a large hill but it is still helpful to keep in mind. If I can keep my heart rate below about 150 or so I usually don’t have many asthma symptoms.

Also posture. Using good posture does not feel natural to me but if I don’t maintain good posture at least most of the time I will have significant neck and back pain. I am also always aware of my range of motion so as to stay in my mid range. My joints are hypermobile so it’s very easy to exceed safe ranges of motion without even noticing. I am constantly assessing my movements to make sure I move in ways that won’t hurt any joints. At times I find myself getting jealous of people who can slouch, especially on car rides. For me the cost is just too high.

Another thing I am constantly thinking about is triaging abdominal pain. I have had abdominal pain of some sort every day for the last 8 years. I have to assess this to figure out if I can help the situation and to keep an eye out for anything more severe that might need medical attention. I’ve heard too many horror stories of people with chronic symptoms ignoring a new pain and then ending up in emergency surgery for some crazy problem. So whenever I have pain I am thinking about which organs are near that place and checking myself for any other symptoms that could be related to a more serious problem. Most of the time it has to do with gas pain. Even that I have to take care of manually most of the time by using a special belly rub that a doctor at the Cleveland Clinic taught me to get the farts out.

I’m always thinking about thermal regulation. I don’t do this well on my own so I have to use outside things to help. The most obvious way to do this is to dress for the weather/activity. I often have several layers with me. There is always an extra sweater in my car just in case. I am always aware of the nearest air conditioned building in the summertime and the nearest heated building in winter. In winter I make sure to wrap up any joints that have been recently injured.

I am also always keeping track of where the nearest place I can sit down is. In an emergency situation I will just sit myself down wherever I am regardless but it’s much easier to know right where the benches and chairs are. If you ever see me at a party looking around, I’m probably looking for a chair.

I am prone to skin infections (abscesses) so I’m always on the lookout for those. Any red or inflamed spots are on my radar. This happens on at least a weekly basis. More often in hot weather, mostly due to shaving and sweating. I make sure to look over my body for irritated spots at least once a day. This has come in handy with the recent upswing in tick-borne illnesses. Since I am already looking over my body daily I can also check for ticks while I am at it. If I do find irritated spots I monitor them, wash them with probiotic soap and/or put probiotic ointment on them. After the digestive track the skin is the second largest microbiome in the human body. Since using probiotic soap and ointment (since 2015 when I had C Diff) I haven’t had any abscesses that needed antibiotic intervention, so that’s a win.

This is common among women but I am always keeping track of where I am in my cycle. What is somewhat less common (though still pretty prevalent) is that depending on where I am in my cycle I have to change my eating habits to reduce my risk of getting a migraine. Whenever my hormones are dipping (ovulation and PMSing) I need to avoid all chocolate, alcohol, and processed meats. I also need to be doubly sure I’m keeping myself well hydrated.

When taken all at once like this, it feels like a lot-even to me. It’s no wonder I get mentally exhausted. And I didn’t even get into the attention I pay to my mental health each day. It’s helpful to remember that I learned to monitor each of those things one at a time. Some, like flexing my legs, I have been doing for nearly 2 decades. Monitoring my abdominal pain I have been doing for about 8 years. Keeping track of what I eat as it relates to my hormonal fluctuations I only figured out about a year ago.

For the healthy folks out there this may demonstrate why some things are so much harder for me, as I’m constantly thinking about many different things at once. Don’t take it personally if I look a bit distracted, I’m probably just noting where my abdominal pain is or checking my pulse.

For the chronically ill folks please remember that we take these things one at a time. You got this, and it does get easier over time to keep track of all the things you need to. Some of it eventually becomes second nature and requires less brain power. Sometimes it feels overwhelming but we can learn to keep track of everything and still interact with the world.