Dealing With Chronic Fatigue

Being tired all the time is pretty horrible. And I don’t mean your average student ‘tired all the time’. I mean the fatigue associated with chronic health conditions, in my case mainly stemming from a mixture of depression and anxiety. Depression makes you tired because it, well, depresses everything in your body. Anxiety itself doesn’t make you tired, but for those of us who suffer with acute anxiety/panic for large stretches of the time, this means our heart and mind is working overtime in these periods, and adrenaline is pumping around our body akin to a fight or flight response. The human body is not really cut out to be on this much of a high alert for such large stretches of time, so once things have calmed down, it is exHAUSTED.

I am often so tired I can’t do anything but sleep or lay about in bed. I’m very caffeine intolerant – it will keep me awake when I’m exhausted, but it won’t still give me the energy that I need to actually DO anything once I’m in that state. I often physically (and mentally) cannot get out of bed in the morning even with 8-10 hours sleep. I fall asleep in lectures even when I’ve had enough sleep the night before. I can struggle to concentrate when I’m reading, or on the telly, as my eyes just start closing of their own accord. I am so tired I can’t walk properly; my motor co-ordination becomes even worse than usual, so I bang myself on things, trip, slip, and fall. I get so exhausted that I can’t speak properly. My words come out in a funny order and sometimes my speech slurs or the words won’t come out at all, which is very frustrating, losing the ability to communicate effectively.

I often miss things I want to do because I’m just too goddamn exhausted. For example, this evening I was supposed to go to a pole fitness class, but I had to go for a nap instead, and even after the 2hr nap, I am very, very tired. My whole body feels heavy and achy and my head feels tired and my eyes are drooping. When this happens I have learnt that thre is nothing I can do except ride it out, and get lots and lots of rest. It’s frustrating. I’m young, I want to be out having fun and doing as much as I can at what is supposed to be the most energetic time of my life, yet I spend huge quantities of my time in bed.

Spoon Theory

Spoon theory was created by Christine Miserandino, a blogger with a disability, and first posted here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ as she recounts trying to explain the extreme, chronic fatigue that comes with her illness to a friend. It’s well worth a read and I find it very useful at explaining to people my limited ability to do things because of the tiredness.

A summary: Christine was in a cafe with her friend at the time and wanted a visual aid to help explain how it felt to experience this debilitating tiredness so often. She saw some spoons so she used them, and that’s why it’s called spoon theory! Basically, the idea is that spoons represent energy. Everyone has a finite amount of them, and if you have chronic fatigue as a symptom or result of your disability you will have less spoons than healthy people, and it will also take a smaller activity to use of an entire spoon. For example, having a shower and washing my hair will use up one of my spoons, whereas most people would see this as a small, inconsequential action that doesn’t result in feeling tired afterwards.

If you use up all your spoons, well, that’s it. You’ve basically used up your battery and you can’t do anything but rest. For people who are chronically ill, it might take longer to recharge than for a healthy person, so for example if I have a busy day, it usually takes me about two days after that to full recuperate to my base amount of spoons. If my partner has a busy day, he just needs a good long night’s sleep and then he’ll be fine the next day.

Christine also came up with the concept of ‘borrowing’ spoons. So, if you know you need to be particularly active one day, you can borrow some of tomorrows spoons for today, but you do that knowing that tomorrow you will have less and will spend most of the time sleeping/laying about to recover.

Spoon theory is useful at explaining in a simple way the lived reality of those of us who have disabilities or chronic health conditions that result in this enduring fatigue. It is also useful for me as a sufferer to get to grips with my fatigue and how to manage it as best I can. It helps me think about planning my energy use, something quite depressing for a 21 year old to think about but nevertheless important if I want to achieve as much as I can. I have to priortise using my spoons on the most important activities, and where I have enough left over, the ones I most want to do. I have a pole fitness class booked for tomorrow evening too, which is the first session of a new 6-week course, which I figured was more important to attend than tonight’s (the last class of a previous course). So, I decided not to go tonight, to save some spoons in the hope that i will have enough spare for tomorrow’s class. It is a delicate balancing act where we are always thinking about what we have to do each day, what we can actually do each day, and how we pick what we are going to do and what we are going to essentially forfeit in favour of other things.

Hopefully this will provide some insight into living with chronic fatigue (and by that I mean the symptom not the standalone condition alone).

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