Me and ME

Leah Martindale, Third Year Film & Television

Leah Martindale discusses the impact that her diagnosis of Myalgic Encephalomyelitis (ME) has had on her life.

When I was twelve, I broke my arm. Easily the most painful experience of my life, it was a complex fracture-break that took pins in the bone and months of my life to heal. In its bright yellow cast, and long fat scar, it was a clear indicator that something was wrong.

When I was fifteen, I broke my nose. A three-minute surgery and attractive facial plaster later and all was sorted, and I managed quite literally to save face. With a lovely fat lump and a skewie septum, it was a clear display that something was wrong.

When I was twenty, I fractured my ankle. A stupid accident in SWX of all places that resulted in me sporting a fashionable pair of dull grey crutches. Hopping up stairs and dragging myself around lectures, it was a clear sign that something was wrong.

Image by Epigram / Luke Unger

In second year, I received confirmation of my formal diagnosis of Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). An invisible illness that saps my youthful energy and leaves me as spritely as your average sixty-year-old. CFS is defined by the NHS as ‘a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness.’

It is theorised that CFS is sparked in many of us by a spate of illness, after which the body does not know to get rid of its symptoms. Imagine a house being broken into, and the alarm going off; but then, every time anyone opens the front door, the alarm goes off again. That is the simplest way I can describe my life with CFS.

Simple acts set off the body's alarms: tiredness, muscle pain, 'brain fog', memory loss, difficulty concentrating, sore throats, back ache, and all the joys in between.

I’ve always brought electricity to a group. Insufferably loud, scatter-brained, and constantly quipping, people find it completely inconsistent for me to be paralysed by fatigue in my day-to-day life. When I am at a peak of my energy I have worked as a walking tour guide, completed eight-hour essay writing stints, and gone on week long benders without a breather. When I am in a trough it is too exhausting to stand. To speak. To cook.

It would take a better man than me to have CFS and not manage, at times, to be desperately depressed. When the world is going at a thousand miles an hour and your body is so achy from the previous day's activities that you cannot stand long enough to shower, you do not have the mental energy to process simple maths like telling the time, or cannot remember what you have heard moments before, it is easy to feel like the world is ending.

There was a time at which it was truly overwhelming. The prospect of facing this every day for the rest of my life felt like a death sentence. The fact that I may wake up one day with muscles too fatigued to stand, and no sure-fire way of staving it off, scares me still. As someone aiming to pursue a career in academia, it is hardly promising that I cannot read more than a few hundred words off a screen before my cognitive processing gives up. As someone with a desperate wanderlust, it is worrying to know I cannot carry a backpack more than a few minutes without exhaustion, or on bad days walk more than ten minutes without crippling backpain.

The main reason for my worries, however, is not the illness itself. I have my own methods of avoiding the boom-and-bust phenomenon familiar to all fellow CFS-ers. The most difficult part, for me, is the lack of understanding.

My fear of seeming lazy is overriding. I worry that I appear lazy when I am too tired to cook and have to order food, cannot face the walk to University and have to get an uber or cannot physically process a reading and have to wing it in a seminar. I am not a lazy girl. I would argue that I am the most painstakingly active person I know. We just work on different scales.

I worry that I appear lazy when I am too tired to cook and have to order food or cannot face the walk to University and have to get an uber.

The best analogy that my chronic fatigue cognitive behavioural therapist gave me was this: If we all have dials in our bodies of how strongly we feel something, healthy people are at about a 2. I am cranked up to a 5. When you are tired, you may dial it up to a 5. Your body starts to feel aches and pains more acutely than before. By that point, I am at an 8.

As someone who exudes energy from every orifice, it is understandably confusing to my friends and peers that I have such illogical struggles. Jokes about constant naps became a worrying reality of a crippling crutch I’d stuck myself with. That someone with a mouth that runs a mile a minute and a penchant for running off in clubs for hours on end cannot, at times, stand long enough to put toast on, or think quickly enough to force a sentence out, is baffling. In truth, it baffles me. I wish there were a battery bar shining out of my face, so people could see the bright red sliver of a bar when I am trying my damnedest to pretend to be all green.

If I could impart one piece of wisdom from my life with CFS it is this: it is invisible. It follows me like a shadow and sometimes the sun is low and my shadow is taller than I am. All I ask is that people try their hardest to know that I am not just me when I am in the light, I am me in the shadows as well. That pretentious metaphor is the best I can do.

Featured Image: Epigram / Marina Afzal-Khan