When Cooking One Meal Takes All Day

Posted: August 1, 2016 in Disability
Tags: , , , ,

AKA a day in the life of a spoonie.


I wrote this last night but then wasn’t sure about posting it or not. I’ve been debating if I should post this or not. But I kind of think it’s an important post in the way of recognizing what low spoon days can look like. For me, my “spoons” or what can I manage, will vary day to day. Some days are better and those are the days I work, get school stuff done, workout, et cetera. And it’s easier to talk about those times, and the struggles I have during those times. It’s hard to talk about the bad days. The days I get nothing or almost done and little acts leave me crumpled on the floor in tears from exhaustion and pain. I still struggle with feeling embarrassed and ashamed of these days. Internalizing the message that this is a reflection on me as a person, the idea that if I was a better person I would be strong enough to overcome it. Even though I know logically that is not how this works. 

I really wanted some mashed potatoes for dinner today, and did end up making them, but it took all day to accomplish.

A run down of my day:

Woke up late in the afternoon (spent most of my weekend just sleeping. After work Friday I came home and slept for 24 hours straight. I’ve been completely exhausted.)

I was awake but still incredibly exhausted, and so dizzy I couldn’t stand for awhile.

After a bit I started feeling better- better enough to take a shower. So I decided I would try to go to the grocery store to get some food. Which meant first taking a shower.

After the shower I needed to sit and rest a bit before getting dressed to leave. After a bit of rest I got dressed in jeans, a tank top, a zip up hoodie, and slip on shoes- a very simple outfit that didn’t cost many spoons. Then I headed out to the grocery store.

I managed to get to the store just before closing to get some groceries.

Came home,  brought my groceries into my house, and then immediately collapsed in a pile of grocery bags right at my front door where I lied crying, completely drained, in pain, and frustrated that something as simple as going shopping for some groceries left me so completely drained.

Rested there a little bit before I was able to get up and put away groceries.

Ate some raw veggies while resting more.

After awhile I was able to get up and put food on the stove and in the oven to cook.

Then rested while it cooked.

After awhile I had cooked potatoes, peas, and some turkey. A very good dinner.

That was around about 2am. Finally, by 2 am, I had dinner.

And that’s basically all I managed to accomplish today (well, that and managing to get some programs reinstalled on my computer because on top of my body not working, my computer is giving me shit too).

Welcome to a day in my life.

Thought I would post this because it reminds me of the things people often take for granted, like being to go grocery shopping or cook dinner and not have that take up all your energy for a day. To have that be just one small part of the day.

And now I am off to bed, hoping I have more spoons tomorrow because I obviously wouldn’t have been able to manage a full day of work on what I had available this weekend.

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