M.E. from the Male Perspective

Thursday 31 October 2019

I have noticed an increase in enquiries from male M.E. sufferers, therefore I’d like to discuss chronic illness from the male perspective. Statistically, M.E. affects more women than men, and in addition, men are more reluctant to talk about their health. Two years ago, an anonymous friend of mine agreed to share his experience with us. His open and honest article is entitled The Invisible Man, and you can read an extract of it in this month’s blog post. I encourage male M.E. sufferers to share their experiences with each other, or to get in touch with organisations if they need support and guidance.

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.

 

Please continue to The Invisible Man: M.E. from the Male Perspectivefor part two of this article.

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News

15 Nov 2019
New Articles Published
13 Nov 2019
Griffith University Research
7 Nov 2019
ME/CFS Biomedical Partnership
3 Nov 2019
M.E. Organisations
1 Nov 2019
Nicolette Keates & Yvonne Pace
1 Nov 2019
Badges Back In Stock
14 Sep 2019
Forward-ME
20 Jul 2019
CMRC Meeting Summary

 
 
 

News

15 Nov 2019
New Articles Published
13 Nov 2019
Griffith University Research
7 Nov 2019
ME/CFS Biomedical Partnership
3 Nov 2019
M.E. Organisations
1 Nov 2019
Nicolette Keates & Yvonne Pace
1 Nov 2019
Badges Back In Stock
14 Sep 2019
Forward-ME
20 Jul 2019
CMRC Meeting Summary