Let’s talk about usable hours. A healthy adult should have around fourteen usable hours in their day to get shit done. Fourteen hours to eat, practice good personal hygiene, work, have hobbies, maintain personal relationships, stay physically fit, etc.
Right now, I wake up at 8am to take my morning meds and start my day. I average between 30 and 45 minutes before my first crash of the day hits and I am down for a two to three hour nap. I take my next round of meds at 11am and then again at 12:30. The second full on crash comes between 1pm and 2pm, lasting until around 5pm when I’m woken up for dinner. After dinner, I have a minute of good before I’m down again. Bedtime is never later than 9pm as of late.
These crashes are non-negotiable. My body tells me that I must lay down somewhere in the fetal position with the covers pulled over my head. I hit a brick wall with the words “This is where you die” graffitied on them.
What really sucks? The clinicians and research scientists want to make us feel extra sucky about ourselves in that they say we can’t count sitting staring off into space or pretending we’re watching Netflix or scrolling through social media or resting with our eyes open in our usable hours. This means that when you break down my day, I average three to four usable hours. For a few more hours than that, I may be semi-conscious, but being alive is fucking exhausting. Holding my head up takes more energy than I have to offer. Carrying on an intelligent conversation isn’t possible through the confusion and the fog. So I lay there–awake–but kind of a shell of a person, occasionally shuddering or moaning, until I feel like I won’t die if I get up long enough to do a passion project just to feel like I participated in my life today.
That’s why I love baking. In baking, it takes maybe ten or fifteen minutes to measure out ingredients and put them in the mixer together (30 minutes if it involves melting sugar or chocolate on the stove because I’m having a good day), and then I get to sit perfectly still in my chair in front of the warm oven and stare at my creation growing into something delicious. And my dirty little secret? My mom does all the heavy lifting in the kitchen. She stirs the thick batters. She pours everything into the baking pans. She does everything I can’t because I’m not giving up the parts of baking that I love just because there are parts I physically can’t make happen due to weakness or fatigue. She’s my favorite.
So all my friends on social media see posts all the time of me cooking and baking but in real talk conversations the word is I am dying. Both are true. Because I choose to use my few usable hours doing something I love and that I can manage with a little help. And I want to share my creations with people because I am proud of them.
Also LuLaRoe modeling. I have a lot of fun doing that. I only wear LuLaRoe anyway because it’s the only clothing that doesn’t hurt my skin or my abdomen. Plus every outfit is so stinking cute that taking thirty seconds to snap a cute photo is a fun way to brighten my day. It makes me feel more like a normal twenty year old girl.
Should I also be sharing the hours of my day that I’m shivering in bed, crying that I feel like I’m going to die? Maybe. I’ll think about it. But I think it would be hurtful to a lot of people. It’s hard to see someone you care about go through life the way I do. Cakes and cookies and cute clothes are a lot prettier.
How do y’all spend your usable hours?