Cards showing the cost in spoons of everyday activities

Managing Everyday Tasks with AxSpa

As many of you already know, AS makes our lives a lot more difficult. Simple everyday tasks, that we once took for granted, become things that exhaust us.

Since you are part of this community, I have presumed that you know the term spoonie. If not, a spoonie is a person with a chronic illness who has a specific amount energy each day. Spoons equal a unit of energy. You may start each morning with a different number of spoons. This varies depending on how you are feeling, how you slept and on what you have been doing the previous day. Each task takes up certain number of spoons.

I have to plan my day around my fatigue levels and spoon usage

I wake up in the morning, and even after sleeping, I need a little rest before I begin my day. I normally sit in bed with my hot water bottles and drink a cup of tea. Hoping to earn a few extra spoons.

Normally, I make a quick breakfast, so I don’t tire myself out too much. Usually, I have a bowl of cereal or scrambled eggs and toast, with another cup of tea. This may take up 2 spoons.

Next it's shower time

Before I got sick, I used to find going for a shower relaxing. A place to have completely to yourself, no people, and no phone. A time to think in peace. Now it is like a game of trying not to pass out. My biggest fear is fainting in the shower, it has nearly happened a few times. On a low spoons day this may take up 4 or 5 spoons. On a good day it will take less spoons.

Washing and conditioning my hair really tires me out and causes more pains in my shoulders and neck. Do not get me started on brushing and drying my hair. Luckily, more often than not my mom dries my hair for me.

I always need a lie down after a shower. It takes up so much of my energy, between the standing, washing, and hot water. Although, the hot water helps loosen out my joints.

Another daily task that tires me out is cooking

This may take 2 to 4 spoons. Since being sick I have been spending a lot more time at home. I have really started to enjoy cooking and experimenting with new meals. Chopping the vegetables really hurts my shoulders and zaps my energy. If there is no one home to help me I will always end up lying down for a short while before I start cooking.

I love going for walks. I live in the countryside, so I love finding new spots and going on a little adventure. On bad fatigue days I cannot do this, or I will feel like I will faint on my walk.

I live at home with my parents. So, luckily, I do not have to do all the housework. I like to keep my room tidy. Sometimes I get in the mood where I want to tidy or rearrange my room. A lot of the time I do not have the energy to do this. If I do, I will be left with no energy.

Rest is best

I will rest in between these tasks to try and save as many spoons as possible. I took for granted being able to do everyday tasks without it zapping my energy. On days where I have a small number of spoons, I will try to do the least amount of tasks I can and save what spoons I have.

I always incorporate rest into my day, it is so important. I find when I don’t rest my fatigue causes me to feel nauseous and dizzy. Does this happen to you?

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