Woke up this morning thinking about specific activities that are really challenging for me right now. For context, I’m 25 and have been pretty debilitated since I was 22. Some of the things I miss most about my pre-POTS life are:

• taking a shower without needing to rest
• having sex without pain
• playing tennis
• going for long walks
• sitting at my desk for hours, working on a painting
• wasting an afternoon roaming around the grocery store
• organizing my closet/ doing domestic labor
• cooking
• hiking
• traveling
• never thinking about fainting ever lmao
• getting around my college campus/ being a student
• Being able to socialize without being anxious
• being able to style my hair without my arms feeling like they’re gonna fall off
• This one might be unrelated, but having a full head of hair rip

In college, I used to be someone who loved adventure. Never struggled to connect with new people, and never said no to a spontaneous experience. It was this spirit that allowed me to do things that my childhood self would marvel at. I sky-dove off Maui, swam with sharks off Oahu. Hiked Yosemite and Zion. Since I got sick, I feel like I’m living the same day over and over again. I cannot push myself out of my comfort zone. I feel panicked even when I try small things like sitting at a coffee shop. Most of my energy goes towards staying on top of doctors appointments. Sometimes I feel like a caged animal.

I’m grateful that I can still read, and get lost in a book. I’m grateful I can still eat some of my favorite foods. I’m grateful I can still get around, albeit there is always pain in the background for me now. I’m grateful I can go to the gym to row and swim, and even lift a little. I’m grateful that my parents can help take care of me financially, and have invited me back into their home. I know it’s a huge privilege. I could not devote energy to trying to get better if I had to work full-time.

I don’t know many people who relate with this experience, but I know that if anyone might, it’s y’all.

Tell me what you miss. From the mundane things to the more exciting. Tell me your dreams. Tell me what you feel you took for granted — and may we all have the opportunity to enjoy these things again in our lives❤️