A day in the life of a potsie can range drastically depending on so many variables. On a good day, I can go without feeling any real symptoms. My heart rate on those good day typically range 50 beats per minute to 115 beats per minute. On those days, I try to get all of my high energy tasks done and catch up on the tasks I was not able to complete on my bad days. These tasks include “everything showers”, going to events with friends, going out in public to shop instead of ordering everything online, dying my hair, and other things of the sorts. It is kind of rare that I wake up feeling amazing with little to no symptoms. This only happens when everything lines up perfectly. I get enough sleep, I’m adequately hydrated, I hadn’t overexerted myself on previous day, I have eaten enough nutritious food, and the weather isn’t acting crazy.
Mediocre to bad days are what I am most frequently met with. Often when the weather changes at all, especially when it rains, I start getting super potsie. What seems like the littlest things, like getting one less hour of sleep or doing one too many school assignments in a night, can set off my symptoms. These less than perfect days cause me to put a bigger emphasis on rest, which often causes me to fall behind at work, school, or in my personal lives. I recently posted a video to all of my socials that follows me through one of my worse days. On that day in particular, I was feeling very symptomy because I had worked all weekend at my job and on homework, along with not taking the best care of myself in terms of hydrating or resting. All of that caught up to me to the point where I had to call out of all of my classes for the day and spent about ninety percent of my day laying in bed, trying to muster up enough energy to do the smallest of things like shower or post on my social media pages. Salt pills, compression clothing, ice packs, hydration packets, and my bed are my best friends on those bad days.
On those less than ideal days it is hard not to let it affect mental health as it affects physical health. I often find myself thinking “why can’t I just get up and shower or get a glass of water on my own”, “my friends must hate me because I cancel on them so much”, or “I am such a burden to those around me who have to help me do the smallest things”. These feeling get elevated as people at school, work, or in my personal life say things like “you are just being lazy”, “you are too young to actually be feeling that bad everyday”, or “why do you make being disabled your entire personality”. On my Instagram and Facebook I covered ways to re frame these phrases so potsies feel supported instead of feeling judged or criticized for what we can’t help. I luckily have a very supportive boyfriend, family members, and friends who remind me that I am not a burden and that they choose to be there for me and help me out in any way that I need. It has also been incredibly helpful meeting all of the amazing potsies that have followed me along with this Power in POTS journey, some sharing their stories with me, making me feel less alone in my struggles. Finding your village and prioritizing rest and all the other things you need make the bad days not as miserable.
Don’t hesitate to contact me if you need a little potsie support or if you just want to trade low energy tips. We are all in this together < 3
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