Day 15 of #MyEDSChallenge … staying home (isolation)


I’ve always been a homebody; my home is my sanctuary from a world I often find overwhelming and physically uncomfortable. I always carefully curate each place I’ve lived so that my home has basically everything I need! This usually means a comfortable sideways couch (i.e., one I can lay down on) or recliner, a fussy coffee setup, a functional kitchen, endless tubs of wool and yarn, and preferably a cat.

My furniture is chosen to minimize pain and discomfort, so leaving home *always* means I’m going to be in more pain or possibly even injure myself, so I tend to feel a strong gravitational pull to be at home. It’s also exhausting to mask what’s going on with my body, so I tend to have limited capacity for social gatherings. 

COVID has been such a strange opportunity. On the one hand it’s been so nice to be at home as much as I want and not have to feel weird or ashamed that I don’t want to go out, or feeling like I’m either disappointing friends and family that I don’t want to go, or going and having to fight my own internal resistance and growing fatigue. In that sense it’s been very freeing to just do my own thing to my heart’s content. On the other hand, it’s been challenging because it meant a shift to 100% computer work for my job for about 6 months, and sitting in front of a computer all day every day is a terrible activity for my body. Too much sitting in one posture, and not being able to find a balance of movement and rest. 

I’ve always struggled to “exercise”, and what I’ve found to be most successful is to incorporate movement into tasks I already need to do. When I lived in Zurich, Switzerland, I would walk to campus every day in the morning and take the tram home in the afternoon. At my current job, I have a huge mix of tasks and in a typical day will clock 8,000-10,000 steps just making laps around the building I work in during the course of my normal activities. So when we were sent home, I suddenly had no “excuse” to move and found it very difficult to artificially structure movement into my day. It’s a great example of executive dysfunction, and no amount of internal or external browbeating, pleading, coercing, rewarding, or anything could get me to get up and take a few 10-minute walks each day. So, that part of COVID was really hard for me, and I’m both grateful to be back at work (where I can move around without having to work at it, and I don’t get stuck in one posture all day), and exhausted from it (since I tend to just go-go-go all day without stopping to rest, because if I stop I’ll realize how absolutely wiped out I am).

I know that most people experienced a tremendous amount of loneliness and isolation during COVID, and I have been hesitant to admit I really didn’t. It’s really been my preferred lifestyle and “social pace”. I do enjoy seeing friends and family, but just less often than more extroverted types! One aspect that I did struggle with is that to socialize during COVID, I either had to zoom (which drives me nuts for many reasons—more computer, awkward posture, can’t see the screen unless I do that old-person-head-tilt thing to look through my bifocals and show off my nose hairs, and auditory delays/weird clipping), hang out on the porch or a park bench (wow-wow-wow uncomfortable seating that is so painful after about 20 minutes), or go for a walk with friends (which is fun, but I never know I’ve overdone it until it’s too late).

Traveling is like all the bad stuff of leaving home, but times 1000. I am never comfortable, usually carrying too heavy of a backpack, eating foods that I digest “unpredictably”, etc. I think the worst part is really not being able to relax physically—I’m either walking, sitting in cafe chairs or park benches, or trying to make a nest of pillows on my hotel bed (or worse, on a miserable hostel mattress with just a travel pillow). By the time I get up in the morning I’m beyond sick of being in bed (laying down causes a lot of pressure point pain in some postures, and back pain and airway problems in other postures), so when I’m at a hotel I get trapped between various uncomfortable alternatives. 

So, I love being at home the most, and I’m an incognito introvert (I like to talk at length, and I mimic an extrovert at work sometimes, but I’m the most introverted person I know in the sense of “do people energize or drain me” and “how much alone time do I need to recover from interacting with people, even ones I love?”), so home really is my happy place!

@ehlers.danlos

#MyEDSChallenge

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