Challenges of a disability (or two)

It’s no secret that I live with two debilitating conditions, both of which are currently without a cure and have very little medical understanding for cause. M.E. and Fibromyalgia are difficult to manage because they are so fluctuating. I consider myself lucky enough to be able to work part-time and still enjoy many activities that others with the same diseases cannot. Yet, there are still limitations I have to consider; some of which impact both my motivation and ability to write.

What are they?
M.E is also known as ‘chronic fatigue syndrome’, although fatigue is not the only symptom it is usually the most persistent. If you’re healthy, the best way to empathise is to recall a particularly busy couple of days – when you’ve barely had chance to sit, eat or think properly; you go home, exhausted, and then to bed. The next day you wake up feeling refreshed and go about your day as usual. But, imagine waking up as exhausted as you went to bed. Not, just the next day, but the one after that and again after that. That’s pretty much how M.E can feel: relentless.
Fibromyalgia is just as bad, if not worse, as it is a chronic pain condition. That deep, uncomfortable ache you get when you have flu – the real flu, not just a terrible cold – that’s as close as I can get to describing it. Everything hurts, all of the time. If I stay in one position for too long, I get stiff and find it difficult to get going again yet if I move too much the pain worsens. It’s a careful balancing act as to managing the symptoms.
Of course, there are many more symptoms of both conditions – headaches, dizziness, blurred vision, nausea, mind fog…the list can be endless, and so each day is potentially a mine-field of side-stepping the symptoms to try and live as much life as is possible without waking the ‘beasts’.

If you want to understand how this impacts on my daily life read ‘The Spoon Theory’; this is a simple analogy based on a physical number of spoons that someone is given (let’s say you have 12), and then you talk through your day, and each time a unit of energy is used (to brush your teeth, make breakfast etc.) a spoon is taken away. Most people never get to the part where they leave the house for work – which is why so many sufferers of M.E. and Fibromyalgia are either house-bound, or even bed-bound. We get a set amount of energy per day, and once it’s gone our choices are limited to borrowing from the next day (but leaving us with less choice tomorrow) or to stop and rest. Sometimes, not the easiest decision to make when people around you have expectations.

spoon-theory

The Consequences of Daily Life
I feel lucky – because I’ve managed to get to a point in both illnesses where I am pretty good at listening to my body and balancing my life with my conditions. It’s not luck, really, it’s been mostly trial and error; sometimes it still is. I have a job where I work Mondays, Wednesdays, and Fridays so that I can have rest days in between. Sometimes I push myself when perhaps I have to go in on a different day – and end up working Wednesday and Thursday. I pay for it, though. Usually by being forced to stay in bed, or on the sofa, with the option to do very little, if anything. It’s not relaxing, it is being sick – though they seem to look the same to most people when you have to do it every other day. Rest is pretty much the only thing that I can do on these days; and sometimes it takes longer than I anticipate to recover. There is no normal. One day I could push myself and the payment could be an extra day resting, but there is an equal risk that the payment could be a week’s worth of rest. It’s like living with a vicious debt-collector who is never satisfied with what you have.

Being a Writer
So, how does this impact on my writing? Well, for a start it’s difficult to feel motivated when your body is screaming out in pain and in desperate need of sleep – even when it is unrefreshing. I have problems concentrating, especially for long periods of time – so gone are the days when I could sit at my computer and write for hours on end. The most I can manage now is about an hour before the words on the screen start to jump about, my hands get unbearably sore and the headache sets in.

One of the other challenges is that I can’t really write to a set routine. It all depends on how I feel on any given day. Sometimes I can manage a couple of 45m-1hr stints, other times I can barely use a keyboard or hold a pen. I tend to know I’m struggling when I start to lose the thread of what I’m trying to write. I start sentences, and don’t know how I was going to end them.

Possibly the worst symptom, from a writer’s point of view, is the mind fog. This means I often lose words; I have to stop writing and google the word I want. I know that I know the word, but my brain just won’t access it. (I had to do it with debt-collector in the previous section). Sometimes I get the wrong word, so I have to remember to edit particularly carefully. And, the one that drives me insane, is that I’ve lost my ability to be a grammar-Nazi. I am one of those people who hates seeing ‘there’, when someone should have written ‘their’, or ‘your’ instead of ‘you’re’. But now I do this regularly, and it drives me up the wall to find such mistakes in my writing when I know the difference and never used to make these mistakes.

It’s not easy to be a writer. It’s also not easy to have one, never mind two, chronic conditions that fluctuate on a daily, weekly and seasonal basis. Trying to be a writer AND live with these conditions is particularly difficult. I tend not to remember this. This is my life and I go about living it the best way I can given that circumstances that I’m in. Yet, sometimes, it’s worth it to stop and take stock of the individual challenges we all have to face, because we are following our dreams in spite of these circumstances, and we should be applauded for this.


Want to help me achieve my dream? Consider supporting me by buying my short story collection, The Memorial Tree, only £1.99 for seven short stories.


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