BA Chat: Reading as a Spoonie

Recently I was having some difficulty with my mental acuity while reading The Iron King. Mentioning being a spoonie and reading isn’t something I usually come across in my Internet travels, but I’m aware there are plenty of book loving spoonies out there, and I feel compelled to share something about it. I should probably start with what a spoonie is. At times I will put it out there, that I have an illness affecting my energy levels, and that’s pretty much what a spoonie is. It’s having a condition that limits your energy, your physical, mental, and emotional abilities, and can have a big impact on your day-to-day life. To better explain the life of a spoonie and where the term comes from I recommend reading The Spoon Theory. It’s a little on the long side, but it has everything you need to know when it comes to low energy and activities exacerbating symptoms.

I myself have a neuroimmune illness known as Myalgic Encephalomyelitis (M.E.), or commonly and unfortunately known as Chronic Fatigue Syndrome (C.F.S.). This impacts my energy levels, creating physical, mental, and emotional fatigue. Amongst a long list of symptoms there’s also muscle pain and cognitive dysfunction. The cognitive dysfunction is really what I’m going to be addressing today when it comes to reading. Of course pain and energy levels change how and when I read, but on those days when it’s bad enough where I can’t read, I will accept it and take a pass. I’ll do something else, even if it’s limited to lying there and talking deliriously, it doesn’t mean it will last (fortunately for me). What really bothers me is my brain and my cognition.

During the majority of reading with The Iron King I was fairly low on spoons, but felt I had enough mental ability to read. Well, that, and I am also quite stubborn. I just really wanted to read even though I knew the story might not make much of an impression on me. Sometimes you have to tell your brain to suck it.

If I had not told my brain to suck it several years ago I know I wouldn’t have been able to begin reading again for quite some time. When I became ill, like the majority of activities in my life, I had to give up reading. I couldn’t do it for two years. The range of symptoms presenting themselves when it comes to cognitive dysfunction is ridiculous. Difficulty creating new memories and recalling memories are two of the ones I have to put up with on a regular basis. Imagine having those problems when you’re attempting to read. It has not been uncommon for me to have to check back repeatedly as I can forget as soon as I’ve read something. It can happen within a page, a paragraph, a sentence, or even a few words. You don’t realise it when your brain is functioning normally, can produce and recall memories, how much effort and energy it can take to imagine something. Not only imagine one scene, but having to hold onto those images while you form new ones to accommodate the new scenes, and then string them all together. These days it’s not as bad as it once was, but even now on the more trying of days I can read with great concentration and still forget what happened.

What makes it worse is another common symptom I have and that’s the incomprehension of words and sentences, even when I’ve previously known and understood what those words have meant. Naturally this is not a symptom that plays nice with memory problems.

It’s not the end to what messes up my reading time either, these cognitive problems add to my energy depletion. Energy depletion takes away from my enjoyment. We all experience the latter on a regular basis; feeling exhausted to the point of apathy or wanting to do something very simplistic. When you’re a spoonie it is a constant problem to juggle and struggle with. You’re not able to recoup your energy levels with food, a quick nap, or a good night’s sleep. I find my lack of energy can greatly affect how I judge and enjoy something.

So while I can still have problems remembering something and while I can find my experience is lacklustre, I refuse to give up on trying. I love stories, whether it’s reading, watching, playing, or writing them. They’re enriching and I believe stories can help a person to grow, to understand more, and to become more open-minded.

I’ve found ways around these setbacks. From taking notes, reading as much as I can in one sitting, writing reviews, taking breaks both with other activities and with resting, only reading when I feel my brain is at a certain level (not when I can’t hold a conversation, that’s for sure), and not attempting to read when I’m having a ‘rest day’ (in other words, I’m wiped out). All of these methods coupled with sheer determination. I was unable to read for two years of my life, I refuse to go back to that. Now I just have to work on being able to listen to music on a regular basis…

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Image by Scataudo and can be found here.
Word on the street is I love guest posters. It’s true! If you’re interested in guest posting on BA, whether it’s book reviews or something else book related, drop me a line. I’d love to hear from you.

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