The Invisible Man:
M.E. from the Male Perspective
Living with Myalgic Encephalomyelitis is something very personal and specific to each of us; hence, to write about it is equally difficult, having to convey what it means such that others can begin to understand, if not entirely fully relate.
One thing that many of us can relate to, however, is living through life’s stages. We may have different life stages we’ve already been through with M.E., and may be planning, contemplating and often worrying about what the future will hold, or regretting/hurting for what might have been, or the illness may be relatively new to our lives, or those in our lives, and we’re wondering what it all means.
In my case, having contracted the illness in my late twenties, I’d already been through some interesting bits of life, but many of the things we imagine form our lives in entirety were yet to happen.
My adventure in the land of M.E. started in early 1998: having moved to a new job a few years earlier, I’d been enjoying those early years of travelling the world, seeing new places and new social, work and relationship experiences.
I’d been living in a hotel in the Netherlands for a few months whilst working with a client in a large city there, but having tired of hotel existence, moved to the coast to live (a 20-minute tram ride away). There I found a beautiful glass-fronted 2-bedroom apartment overlooking the beach, and having recently come out of a relationship, was living the singleton good-life with all my food, drink and travel paid for; with friends around, work going well, and a couple of great cars in the garage, life couldn’t have been better.
Having met a friend in Prague for a weekend of culture and fun the previous weekend, I found myself sitting at my desk in the office on a dreary Saturday in mid-February coordinating the move of some equipment from Paris to The Hague. A couple of other members of my team were with me, and by lunchtime the job was largely complete, so I took them for a Chinese meal and told them to take the rest of the weekend off. All was going well, but I received a phone call containing an extra request, so something else had to be completed on the Sunday – I went out for a drink with friends Saturday night, and then went into work on Sunday to complete the job. It was a long stressful day with only limited success and I started to feel unwell and a little feverish around 3 pm, but continued working later into the night. By midnight I was in bed at home feeling extremely unwell; especially concerning was the fever in combination with a bad headache and very stiff and painful neck. The next day I went into work thinking I had a bit of flu, but nothing I couldn’t work through with. Unfortunately, after an hour in the office, I felt as if I lost consciousness for a few milliseconds – like a quick blackout. It was enough for me to request assistance, and the client kindly arranged for a doctor to see me; I was then sent home after the doctor told me I was suffering from a cold and to rest. My then-girlfriend accompanied me home and looked after me for a few days, at which point I still wasn’t feeling any better – an intense pressure headache, tinnitus, zero energy, lack of mental focus and agonisingly aching joints and muscles.
In short, I’d shared a taxi with a close colleague a few days earlier. He’d been complaining of the worst headache he’d ever had; I must have contracted whatever he was suffering from, and my body reacted very badly to it.
Stupidly, the following week, with all these debilitating symptoms, I somehow managed another few days at work before finally returning to the UK for two weeks’ sick-leave to be looked after by my parents – my then-girlfriend had a life in the Netherlands and I didn’t want to adversely interfere with that. I visited the doctor, who gave me paracetamol and antibiotics.
Halfway through the second week, my boss and I discussed me visiting a client in Scotland before heading back to the Netherlands, so whilst still feeling really awful, I decided it was time to try and get back to work; I’d never had a week off sick in my life before this period, so assumed it would just pass with time – I basically tried to ignore the obvious, that my body was failing and I should help it recover, or at least not make it worse.
Off I flew to Edinburgh, popping the many tablets I’d been prescribed, still oblivious to the damage I was continuing to inflict. The brainfog was there, but I somehow made it through the two days there, before flying back to the Netherlands for another week of work. Again, after dragging my pathetic body through another week of hell at work, I was a complete mess. The dilemma I had was that at the end of that week I was due to travel to the United States to give away my best friend at her wedding, as her father couldn’t travel to do that – having been through a lot with this friend, it was something I felt I had to do, whatever the consequences. So once more, stupidly, I flew from Amsterdam to the North-West coast of America, having consumed two hot-dogs and two beers for breakfast at the airport in a vain attempt at fending off all the weird, scary and debilitating symptoms I was existing through. The transatlantic flight was horrendous, then I had to get an internal flight to my end destination – upon arrival I remember just asking for the biggest, most comfortable, fastest car the company had, and lurched my way driving to the hotel. I spent almost three weeks sick in the hotel room, in bed, with only around twelve hours outside: a few hours buying a suit, and half a day at the wedding and reception (adrenaline got me through, I guess).
Upon arrival back in Amsterdam, I took a car back to my apartment and packed a few clothes. I put the key in the ignition of my car and drove back to the UK via the Channel Tunnel. At my home, I then put the car away, went to bed, and seemed to stay there for months, again being looked after by my parents. A couple of months later, a friend helped me by bringing most of my gear back to the UK; I gave up the apartment in the Netherlands, brought my sports car back to the UK, and sold it.
I saw my GP and a couple of consultants a few times, but they couldn’t determine anything physically wrong, so just sent me away. My employer, however, was becoming concerned at my extended absence and assumed I was suffering from depression, which is sadly general consensus when the medical profession finds no other empirical evidence of illness. After another few months of debilitating pressure headaches, brainfog, tinnitus, aching everything and zero energy, I decided I had to enable my recovery in any way I could – so I started looking for a place to achieve that, and having been single and in a good job for a while, I could afford somewhere decent; I eventually bought a house on the North Yorkshire coast, with fresh sea air and new vistas. I still needed regular care, as getting out of bed was a challenge, as was eating. It seemed as though everything my body previously did autonomously and without complaint was now a serious chore for it to deliver – even eating and digesting food left me even more exhausted. I found that any kind of external stimulation caused more fatigue and nasty symptoms. Ultimately, I couldn’t read a newspaper or book or watch TV; music was out, as was conversation. The TV, switched off before me, often became like a painting against the wall – I was seeing in 2D rather than the usual 3 dimensions, quite a freaky symptom until you understand it’s happening. Any form of light became an enemy, and any type of external temperature fluctuation was agony having to adjust to – I spent lots of time shivering whilst trying in vain to keep my head cool. I found my body feeling so cold due to presumably reduced blood circulation, hence my head felt as if it was constantly burning up.
The days, weeks and months passed, with my new GP stating that M.E. didn’t exist, and that I should seek further counselling and take antidepressants; I refused the antidepressants as I knew I wasn’t depressed, but agreed to counselling as we all need to try and have a chat every so often.
I was now a year into the illness, and found that spending extended periods resting, doing nothing, would help provide a little more capability to achieve things. I still wasn’t experiencing restful sleep; in fact, it felt as if I’d had no more than a couple of hours of continuous sleep over the past 12 months. Trying to sleep with M.E. is a constant challenge: you don’t so much sleep and rest, as have brief moments of unconsciousness throughout 15-17 hours or so of agonising continual pain (headaches, joint/muscle pain, ringing in the ears and any other of a hundred and one random symptoms).
So in the hours when I felt capable of doing something other than simply existing with the curtains closed, the windows shut, and silence all around me (sometimes putting headphones on and listening to extremely low-volume undemanding music to drown out the tinnitus), I would drag myself out of bed and walk a few metres along the cliff path next to the sea. Eventually, over the next six months, these small steps, punctuated by weeks of continual stimulus-deprived bed-rest, turned into me being able to walk 200 metres from the house and back.
As an aside, as a man, contemporary life is confusing enough at the best of times, with wildly varying cultural and other nuances of what is expected of us, hence what we expect of ourselves; in conjunction with a debilitating outwardly invisible illness, the world becomes an even stranger place. With this in mind, it’s important to remember that others will judge us no matter what we do – so the best course of action is the one which protects and nurtures ourselves, in order that we may start to support ourselves. Without doing this, we’re doing a disservice to those who may rely on us, including ourselves! This doesn’t mean abandoning all others in our lives until a point where we’re 100% fit (if ever), but just that we should bring balance and be less concerned about the opinions of others who are not living our lives in our shoes, bodies and minds. For example, many of us functioning well enough to travel will have been through the struggle of negotiating a packed bus or train. When we finally find a seat, elderly or [visibly] physically less able members of the public also board the carriage – it’s often expected that as adults, we should vacate our seat and give it up to the ‘less able’. In this case, it’s best to work out what’s best for you; if you need to remain seated, then do so – social norms do not apply to us with outwardly invisible illnesses. Perhaps work out a simple sentence to roll out if any of the public decide that you should move, simply stating that for health reasons you need to sit. Otherwise, just learn to enjoy the angry, frustrated stares, the tuts and sighs; sit and get through the pain of everyday life knowing you’re surviving and sometimes thriving in spite of this.
Continuing the story, it’s now 18 months after illness onset and I discover I can safely drive short distances again; however, much rest between attempts at exertion is required (a week or two in bed doing absolutely nothing) to achieve this. I receive an ultimatum from my employer, that to continue to receive sick pay I must meet with a consultant psychiatrist to determine my situation. The day comes, I drive to see the consultant, and I’m asked all the usual questions, from symptoms and habits to how I manage states of sexual arousal etc. After almost two hours of exhausting questions and answers, the consultant gives me a straight but cautious diagnosis on the spot: I’m suffering from Post Viral Fatigue Syndrome and I should focus on rebuilding my immune system and regaining my concentration to get me back to work. I drive back from the consultation with not just a name to my illness, but something of a statement of why I’ve become as I have; that I’m not depressed, and need to further help my body to recover from the viral damage. This was a wonderful moment, delivering both vindication of my thoughts, and something with which to approach further recovery.
The consultant calls me at 6:30 am the following day to confirm his diagnosis – he understands precisely what it means to me.
Over the next six months I begin to regain more function, purely by a process of pacing, which meant again spending a lot of time devoid of any external stimulus, and limiting my actions so as to not completely break me again.
What followed these two years of initial agony and small recovery steps is 17 years containing several redundancies, many months of searching for new work, two serious relationships (one of which I’m still in after 12 years), four children, and living in five or six different countries. My career and life are still largely unsettled, in a constant state of flux, but I run a company which provides intercultural consulting, business and life coaching and mindfulness knowledge, experiences and training, as well as IT work. I drive a few hours a day to meet clients, do my work, and then drive back, in addition to the demands of family life.
The only thing that makes this possible is listening to my body and proactively managing where I expend both mental and physical effort. After 19 years I’m still in recovery, and I still feel robbed of many possibilities (driving through the night, or staying up late are a couple of small such things!), but I am equally inherently thankful that my body wasn’t irretrievably damaged and some management of my situation led to me recovering enough to have a fairly normal life.
- Normal means many things to each of us, and especially those of us feeling we just exist with a serious and debilitating illness, rather than living as such – however, what living through this has taught me is:
Listen to your body, try to casually track what makes you worse, what helps; vitamin supplements helped me – I avoided the Ritalin as it made me feel even more like a zombie, which was what I was trying to get away from.
- Rest: which means avoid any stimulation which drains you (internal or external).
- Exercise if you can, this brings all kinds of energy; but likewise, don’t exercise so much, or even walk so far if it means you crash for a month afterwards. Take small steps towards recovery, and don’t beat yourself up about it if you can’t do anything, as in my experience, that means your body needs more / different kinds of rest and more aids to recovery.
Having said all this, I don’t subscribe to the usual cliché of living mindful of your body and everything around you – I guess I’m just that way inclined that I don’t overthink things and live somewhat naively anyway! Overthinking became an enemy for me, it caused my body to close down even more – hence my statement of living simply and listening to what works for you. There are a thousand crackpot money-making schemes out there and they all offer hope to those of us who are desperate, they often come wrapped up in a ‘time-limited offer’, or with false assertions that by talking to someone over the phone, or via email, or even metaphysical methods, you’ll be cured of your ills. We somehow know these things are largely untrue, but are still drawn to them. Listen to yourself and seek good verified sources before jumping into things which can only waste precious time and resources.
In closing, there may not be massive hope out there for all of us living with this hideous condition, but we can each bring our own hope and positives to bear by achieving all we can for ourselves; whether that means making it to the toilet unaided, running a business, or learning to enjoy that beautiful pain-free millisecond moment between unconscious sleep and waking agony, which brings us that sensation of a less painful future to aim for. Above all else, we should only judge ourselves relative to our own situation – judging by any other is a way unto madness and more pain. There are few easy answers, and lots of difficult situations, but these difficult situations are our own and we should seek fulfilment relative to each of these.