Usable Hours

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?

4 thoughts on “Usable Hours

  1. So beautifully written. So honest. So painful! So resilient. It breaks my heart to know your your life. It makes me know that I can be strong, because you can find a way to face forward. Don’t stop, my darling girl. Keep showing us all your pain and your heart so we know just which boat we are floating. Know I’m with you, as best I can be. I love you so much! Grandma Etta

    Sent from my iPhone

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  2. I love your posts because they are so transparent! Don’t stop! You are so brave to let us into your real life and I love seeing your baking creations and modeling your adorable outfits (I have lots of LuLaRoe too!). I share your lack of usable hours but not to your extent. I like knitting! It gives me joy to make things for my great nieces and nephews. I rarely knit for myself, but this year I have a few garments I want to make just for me. Right now I have a friend staying with us while she is in the middle of a big move. She arrived Wednesday evening and Thursday I had a big crash and stayed in bed most of the day, but she knows my deal and my husband and she had a nice time porch sitting (at a social distance, of course). But yesterday we were able to knit and watch movies and it was super fun. I treasure my true friends who understand when I can’t be social – even if they have come a distance to visit – and know that I can’t participate in their travel adventures. I continue to strive to enjoy and be grateful for the hours I have in the day that are usable and I can see that you do that too. Love you, Emma, and am so thankful that Cabbage brought us together.

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  3. I read your blog with a mixture of pride and tears. You write so well, but so truthful. This is a great way to teach those of us who have watched you from your birth to now. We knew something wrong and we couldn’t fix it. Nothing stopped our love and pride in all you were able to accomplish. You make us proud everyday. I love you so very much. Your other Grandma!

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