2 Dec 2018

How it feels to... be exhausted 24 hours a day

The Sunday Times Article

Two years ago, Joseph Luke went from healthy to housebound when he was struck down by ME. He describes the debilitating condition and asks why so little is being done to fund research.

For the past few months, I’ve had a recurring dream. I run and run, and eventually stretch out my arms either side of me, then a gust of wind picks me up and pulls me into the air. I’m above the pocket of south London where I was born, flying effortlessly. The sun is shining. Then the wind drops. I begin to fall. I am awake.

What I find most arresting about the dream is not so much the flying, it’s the running. It’s something I’ve been unable to do in more than two years. I became disabled overnight after I came down in November 2016 with a fever and viral symptoms from which I’ve never recovered.

I tried to drag myself into work, noticing small but telling signs that indicated something was wrong. Stairs required a concerted effort and it felt as though the world around my desk was moving more slowly than it did before.

I developed a permanent sore throat and an overwhelming need to sit down on the train during my morning commute.

Soon I was collecting new symptoms every week, and was unable to leave my bed. I could have understood if this was somehow self-inflicted, but I’d embodied medicine’s prescriptions for a healthy life: I barely drank, I went to the gym three times a week, I willingly ate kale.

Eventually I was diagnosed with myalgic encephalomyelitis (ME), or chronic fatigue syndrome (CFS), as it’s also known. The illness affects about 250,000 people in the UK, millions worldwide, and has seen patients report a lower quality of life than patients with some forms of cancer. It has no known cure.

To have ME is like flu taking up permanent residence inside your body. Patients are crippled by a complete lack of energy, by muscle pain and weakness. Their cognitive abilities decrease; they can suffer from insomnia and sensitivity to light and sound. Symptoms are shared between patients, but also have different manifestations. For as long as I can remember, I’ve been a morning person, but now my body seems crushed by the weight of waking. I’ve also been plagued by constant sinus pain, tinnitus, wheezing and dry eyes. My skin has taken on a strange new texture.

The defining symptom of ME is “post-exertional malaise”: a worsening of all symptoms when the patient reaches a level of activity above their threshold. For some, this threshold could be having a day out with no rest breaks. For others, it could be raising their arm to brush their teeth. I am closer to the latter.

My body is ruled by an invisible dictator that deems quotidian things such as having a phone conversation too draining. Push my luck and it repays me by amplifying my symptoms. When I’ve overdone it with something trivial, like having a friend round to visit, I’ve felt too weak to sit upright, think straight or even talk.

I wake up around 8.30, and it takes me an hour or so to feel human enough to have breakfast. I “get up” at around 11 to brush my teeth, before getting dressed and then flopping on the bed all day. I mainly listen to podcasts and audiobooks, often with my eyes shut. I have to watch what I eat lest it provokes a reaction, and I have to ration every ounce of my energy to get through the day.

I’m generally dealing with more than a dozen symptoms at any given time, though they fluctuate in severity. My mum or dad will bring me lunch at 2pm and I sit up to eat, then it’s back to the same, lying down. If I’m having a better day I might be able to watch half an hour of television during the afternoon, but it’s not something I can consistently do. In the evenings I generally feel a little more stable and I’m able to watch a couple of hours of TV before bed.

That’s basically it. It’s odd to realise I’m at the level of illness that would cause most people to go to A&E, except it’s every day and has gone on for more than two years. It’s been very difficult for my family. My mum and dad are the most generous and loving people I know, and I dread to think how I’d have to deal with this level of disability without their help. That said, it’s often upsetting to acknowledge how much they’re looking after me. I feel that, at their age, I should be looking after them. The natural order of things has been reversed.

Christopher Hitchens once said that instead of battling cancer, it felt much more like it was battling him, and that his experience of illness was much closer to merely resisting while an unstoppable foe went to work on his body. Similarly, ME is not an illness you can push your way out of, and to gain any level of stability requires putting the unhelpful trope of “fighting” illness to one side.

When newly diagnosed and searching for answers, I was surprised to discover that we have known about this illness for almost a century. The first observed case of ME was recorded in Los Angeles, in 1934. Many patients are still not taken seriously by their doctors, who offer the only treatment options available via the NHS: cognitive behavioural therapy and graded exercise therapy. Neither of these are decisively proven to help, while many patients report a significant deterioration in their health after undertaking exercise therapy.

ME is not a rare disease. Its prevalence and the level of disability it causes make a mockery of how little money is dedicated to research. I have spoken to dozens of patients for whom ME has had the same impact that it has on my life. It has stripped me of my career and my independence, and dampened the part of my soul that thrives on spontaneity and activity. I have often wondered how it is possible to be this ill and still be alive, with no more medical assistance than a prescription to buck up and get out more.

To be severely ill every second of every day is difficult. Sometimes I feel like I’ve made peace with it, only for my sense of self to be eroded just a little more after a particularly bad day, week or month. You see your previous self as a ghost and memories are imbued with a dreamlike strangeness, since they seem so distant from your new reality. The grand narrative of your life in which you played the all-conquering hero begins to fade, and the script for the next act remains unread.

Before I became ill, I defined myself by my job at The Times and The Sunday Times, by the things I bought and the places I travelled. This disease ripped those things from me and, with them, it stole who I was. I’ve since attempted to build a new identity, one that doesn’t rely on external things and is instead based on who I actually am. But how do you define who you are when you can’t create or contribute as you did when you were healthy?

It has been sobering to see how quickly I have been erased from other people’s lives, just by not being present. I have lost many friends because I’m not well enough to meet them in person, and it’s tough for them to understand what someone with a severe disease is going through and how to help them. I try not to think too much about the future because it can be upsetting to realise how much you’ve lost and how much you’ll possibly never get back. Relationships, jobs, the ability to tut at your train being late — these are all problems it would be nice to have, but without a body that’s healthy enough to function beyond a basic level, it’s not something I really concern myself with. It’s strange being on the edge of things, as if I’m looking at a shop window while the display is constantly in flux, except you can never go inside and touch the goods. If I ever return to that world, I imagine it will be with a feeling of bliss coupled with uncanniness.

Being this unwell would be more manageable if I felt proper help was on the way. Unfortunately, ME/CFS has had only about £10m in research funding in the UK since 2007, with just a fraction invested in biomedical research. As a comparison, multiple sclerosis has received seven times that amount, yet it affects fewer than half as many people (100,000 in the UK). We need to fund biomedical research, believe patients when they say they are sick, and develop effective treatment options. After decades of knowing about this illness, we have nearly nothing meaningful to show for it. Not because we’ve investigated it thoroughly and come up short, but because we haven’t really begun to try.

It has taken me several months to write this, on and off. Cognitive difficulties and general illness have meant I could only ever chip out a paragraph at a time. I felt it was important not just to put my own experience into writing, but to highlight the experience of so many others who suffer with conditions that are not well understood by medicine. I hope my story has a happier ending than the chapters that have been written thus far, and that other patients and I can return to good health. I hope that one day I’ll hear the sound of the bullet train again as it comes rushing down from Kyoto into Osaka station, or simply go for a walk outside in the quiet corner of London that I call home. I hope that the next time I go for a run it won’t be in my dreams.

Often the language used around illness is binary — you either fight illness, or you’re defeated by it. I object to the idea that if someone is overwhelmed by their illness, it’s because they didn’t fight hard enough. Modern medicine is fantastic, but it gives rise to the illusion of control — almost all of our stories about sick or disabled people are those who succeed “in spite of” their disability. We rarely tell the stories of those who don’t.

The writer’s name has been changed. For support and information on ME/CFS, visit meassociation.org.uk

250,000 The estimated number of people who suffer from ME in the UK. It affects four times as many women as men (ME Association 2018; ME Research UK 2015)


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