Extreme Lifestyle Adjustments For POTS Flares

I’ve spent the better part of the last 4 months in the worst POTS flare I’ve ever had. Because of that I’ve had to find a lot of new and different ways to do things. Some things I’ve just needed to ask for help with, but others I’ve been able to figure out workarounds for. I wanted to share some of the more extreme ways I’ve made adjustments lately to make things work.

One of the hardest things for POTS patients is showering. It’s typically done standing up, in a warm environment, basically all the things our POTSie bodies hate. Once I wore a chest strap heart rate monitor in the shower and my heart rate got all the way up to 192. It’s no wonder I’ve always been tired after showers. My body must think I’m running sprints. Then I get out of the shower and have to dry my hair, or risk some very unpleasant chronic pain symptoms in my neck. Hair drying is again typically done standing up and involves heat.

Even before this flare I had made some adjustments to showering. I had a shower chair that I used if I was tired or felt like my symptoms weren’t in a good place. I’ve never been a person who showers every day, mostly because I’ve always found it exhausting. And I recently created a set up that allows me to sit while drying my hair. I even have an arm that holds the hair dryer in place at head level. All I have to do is turn my head from time to time.

Lately though, even those adjustments have not been enough. For the past month or so the best I can manage is a bath in lukewarm water, followed by my husband drying my hair while I lay on our bed with my hair dangling off the side. It’s honestly kind of romantic in a weird chronic illness sort of way.

For the first 2-3 months of this flare I was able to cook a bit, just not in long chunks of time. During that time I would often prep things ahead of time. If I had a lot of veggies to cut I would set myself up on the living room floor with bowls and a cutting board. Or I would cut up one or two things in a go. By doing that several times a day I could get a whole meal prepped before it was time to start cooking dinner. Then I would position a chair in the kitchen so I could stir while sitting. I had to get up occasionally to get more ingredients or a kitchen gadget but I was able to spend most of the time seated.

This past month things gotten even worse and I haven’t been able to really cook at all. On good days I can make myself oatmeal for breakfast or warm up some leftovers, but on bad days I can’t even do that. There’s no trick to this one. I’ve just had to ask for help. My husband has been learning to cook and many of our friends have been helping out with food. I miss cooking but I’m so grateful to our community for all the ways they’ve helped us out in this time.

Due to some digestive issues I’ve found I need to drink hot water pretty regularly. That was a challenge for a while, trying to get up to go to the kitchen every time I needed a fresh cup. I don’t know why it took me so long to figure out I could use a thermos, but that has been a game changer. Sometimes I even keep some tea bags by the couch in case I’m feeling sassy and want to mix things up a bit.

I’ve also made adjustments to my morning routine. I keep my morning meds next to my bed so I can take them first thing. I am intentional about drinking a significant amount of water in the morning when I first wake up. And I have started keeping my change of clothes next to the bed so I can change horizontally before I have to stand up. This way I have some water, my meds, and compression socks on before facing the day. It’s made my mornings feel a lot less awful.

Springtime is my favorite time of year to be outside. Admittedly the weather is still pretty hit and miss this time of year, but getting up and going outside has been a lot more challenging lately. I need to be sure I’m only upright for a few minutes at a time and then I need to rest in a somewhat horizontal position for at least an hour usually. To make it possible to spend time outside I got a special camp chair that has a foot rest and reclines. It doesn’t get me totally flat but it’s enough that I can sit comfortably in it for an hour on a nice day.

Traveling has required some significant adjustments as well. One basic change has been to recline the seat in the car. It’ll go to almost flat if I need it to. And I’ve created what I call my traveling nest. It’s a rectangular case with handles that can hold my meds, books, notebooks, puzzles, finger nail clippers, chapstick, pens, extra salt and pepper, a little reading lamp. Basically anything I might need. It really helps to minimize the number of times I need to stand up.

The traveling nest leads me right into my horizontal entertainment options. It turns out being stuck on the couch for over a month can get pretty boring. I try not to spend all day, every day, staring at my phone or the TV. It’s much better for my mental health if I have a variety of things to do. I keep all manner of books within easy reach, including fiction, nonfiction, coloring books, and puzzle books. I have paper and clip boards so I can draw or write. Some friends put us onto a board game that I can play while laying down on the couch called Railroad Ink. I have a lap desk that I am using right now for the computer, but it is also very helpful at holding up heavy books so I don’t hurt myself while reading. And I have a phone arm that clamps to the coffee table and can be adjusted as needed. That has been great for virtual doctors appointments, zooming with friends and family, and generally just not having to hold my phone up in a position that will inevitably involve bad posture.

Throughout all of this our friends have been incredibly supportive and helpful. Some have come over and hung out with me so I don’t become isolated despite not being able to do any of the normal activities I would typically do with friends. Some have done dishes or picked up groceries. Many have given me rides to appointments since I haven’t been able to drive myself lately. And I’ve gotten so many pep talks from friends and family. There’s no getting around that this is a hard time in Eric and my life, but we have felt extremely well supported by our community throughout this. I can’t thank you all enough for your help!