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Disability and Productivity

We’ve had a week of productivity and now the body is done.


I have to admit, I’m not the best housekeeper. None of us are, except for maybe Veronica. (She can at least make sure the sink stays empty.) I spent my entire childhood thinking I was just lazy, until I got diagnosed with ADHD and learned about executive dysfunction. Since then, I’ve been trying to give myself a bit more grace and learn how to work within the limited ability of my mind and body.


Because it’s not just the executive dysfunction that gets in the way. It’s also the depressive episodes. It’s the days where we’re rapid switching, or we’re so dissociated we can’t function. It’s the chronic fatigue. It’s the post-exercise malaise. It’s the pain. As I’ve gotten older I’ve had to admit to the fact that my body can no longer do what it did when I was a young adult.


With the executive dysfunction, I’ve learned to try to force myself to do the little “daily” chores, and wait for the “good days” to work on bigger projects. The “good days” are the days I wake up with little pain, a bit of energy, and a hyperfixation on whatever project my brain decides on. These are the days where I can really do some major cleaning. Or I can work on procrastinated projects. A lot of the time, the “daily” chores get completely abandoned for the bigger activity. For example, one Sunday I decided to clean the bathroom. I had a week’s worth of dishes in my sink, but I could only focus on the bathroom.


I always try to take advantage of the “good days”, but it comes with consequences. I almost never pay attention to my body, so I don’t listen when it tells me to stop. It takes me a few days to physically recover from the “good days”, and then I get frustrated with myself.


Again, I try to give myself grace. I realize that my body has limitiations it didn’t used to have. I’ve always been chronically tired, but when I was younger I could push through it, and eventually some adrenaline or dopamine hit would get me energized for a bit. I’ve also had joint pain since high school, the result of running track on less than ideal materials. Even in college I would easily twist an ankle, or my knees would give out. I also dealt with what my coach called dead-leg syndrome, where my entire leg would have a dull ache and it wouldn’t bear weight. Luckily this only happened one leg at a time.


My real physical decline began during my pregnancy. I had terrible sciatica, and it never got better. I’ve had to deal with sciatic nerve pain ever since. I never know when it’s going to flare up. It could be because I slept on one side all night, I might bend the wrong way, or I might be on my feet for too long. Some days I can push through the sciatica, but sometimes I’m in tears. Later I developed back and hip pain that I dealt with by taking some Advil and ignoring the pain. I blame Covid for making the back pain worse. I went from having a job where I was running around on my feet all day, to a job where I had to sit at a desk for 8 hours. And then I would sit and watch TV or work on crafts, because I couldn’t leave the house to go anywhere. After Covid I maintained my work from home position, so I still sit for 8 hours–although now I will get up and walk around every hour or so.


I’m not sure when the post-exercise malaise started. I think it crept up slowly without my noticing until suddenly I couldn’t exercise anymore. Even 20 minutes on the treadmill will make me incredibly sick. I become extremely fatigued and get nauseous. I get so dizzy that I can’t do anything. After exerting myself for even a short amount of time, I have to sit down and recover. Without trying to exaggerate, it really does feel like I might die.


And any psychiatric patient knows about the side-effects of medication. Between the mood stabilizers, the anti-depressants, and the anxiety meds, I never know which is causing what problem. They have definitely made me less tolerant of the heat, so it’s really hard for me to do things during the summer. Just doing laundry (I live on the 3rd floor of my building and there is no elevator) will have me oversweating and feeling like I’m going to pass out. I never realized how bad heat sensitivity was until I experienced it myself.


I don’t say all this to complain. I know I have it easy compared to what others go through. I am still able to work and I can still function. I can participate in activities, I just have to recover afterwards. I’m hesitant to say I have chronic fatigue syndrome, because I am able to do things, I just have a very limited amount of energy. So I’ve had to admit I experience chronic fatigue, but maybe not enough to have any kind of diagnosis.


I do say this to paint a picture of my daily life. If I stand at the sink and do dishes, I will have back pain. If I have to go up and down the stairs too many times, I will probably have to lay down. I have to pick and choose what chores to do, because I don’t have the spoons to do them all. It’s also hard for me to do too much after a full day of work. And this is all before the executive function and depression.


So why am I discussing any of this? Well, I’ve had a week of extreme productivity. How? Well, not everyone in the system understands the limitations of the body. At the beginning of the week I finally decided to put together the bed I bought 2 months ago. Now in order to put this bed together, I also had to take a bed apart. Enter Anthony, who is the builder of our system. Nine times out of ten, if we have to put something together, Anthony has a hand in it. Anthony does not front very much, and therefore Anthony hasn’t ever had to sit with the fatigue and malaise that comes after doing too much work. So he doesn’t know when to stop.


We did get the bed put together, which I’m so thankful for his help. But he didn’t stop there. As soon as the bed was put together, he started taking apart the other bed. My original plan was to put the bed together one night, and take the other one apart the next night. That wasn’t good enough for Anthony. He doesn’t like to leave things unfinished. So one bed was built and another taken apart in the same afternoon. On top of that we had to get rid of a queen-sized mattress. So after taking the bed apart he dragged this queen mattress–by ourselves!--down two flights of stairs. Thankfully I convinced him that taking everything to storage could wait. That evening I could barely move.


Throughout the rest of the week we were a little bit better about working within our body’s limits, although we still did more than we usually do. On one particularly exhausting day, I cleaned out my email of the almost two thousand messages I had. As the next weekend approached, I spent the evening doing multiple loads of laundry and taking the old bed to storage. We didn’t realize we had a heat advisory, and our storage facility is not climate controlled. So needless to say, after the storage trip, we came home and dealt with our heat sickness. The next day we put a second bed together. The day after that we put up some shelves and organized our bookcase.


Now I am sitting here, reflecting on the past week. We got a lot done. We’ve also paid the price. We’ve had back pain all week, and we’ve definitely been struggling with the heat. The heat also makes the post-exercise malaise so much worse. So every day this week we would work until our body gave out. Our body is tired. And it probably deserves a week of rest after a week of work.


Despite it all, I don’t regret the past week. A lot of things got taken care of that should have been done a long time ago. I ride the waves of my hyperfixations because I never know when the stars will next align. All of the pain and fatigue is just what I have to deal with. And this will probably be the pattern I continue, unless my brain and body decide to make friends.


-Shell


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