All about ME

Something I've meant to do for ages is to write up what it's like to have ME, mostly so that when I look back and don't remember all the detail, hopefully when I'm finally clear of this thing, then I don't feel that I've missed out, or was complaining unnecessarily.

It's ironic in some ways that I've got this thing, mostly because I've never really believed in it.

Tom was just another kid at school. Smarter than most, and not particularly athletic, but more than happy to dig in to the sports he enjoyed. One year, he got hepatitis. He took an age off school, though not as much as he should've, because I remember seeing him quite ill for a long time. After recovering, he disappeared again. It turned out he now had ME.

To us, it seemed like a great wheeze. The chance to pick and choose what to do, and for how long! I remember that after a while, he came to play badminton, and played like a demon, until after 30-40 minutes, he said he was "too tired". I couldn't see it myself. He looked fine.

So really, it was clear to me that this was just a matter of the kind of tiredness we all experience when returning to work from holiday, or on a Monday morning after a sleepy weekend. I know what that is - it's not a disease, it doesn't need a name; you're just tired and you need to get on with it.

Or maybe it was the kind of tired you get sometimes. You know, in those dark depressing months, when it's hard to get out of bed, or see the need. We all have those times.

But I now understand much better. It is not that.

In January 2007, I got Glandular Fever (I think yanks call this 'mono'? or 'epstein barr' if they're being clever). This is usually something teenagers get, and is not pleasant at all. Your throat is on fire, for about two weeks. The doctor recommends taking the maximum doses of both paracetamol and ibuprofen, yet it's still not really enough. I remember my mum told me afterwards that she could smell the rotting flesh in half the house. Like chicken pox, this is something you want to get out of the way young. Ninety percent of the population carries it, most catching it as a teenager, and some show no symptoms. I was twenty-nine.

Upon recovery, which was a great relief, I felt much better. The following month, I spent two weeks in New Zealand, and I remember running along the top of the beach nearly every day. I came home, and carried on with runs.

I have always liked running, mostly sprinting from place to place, but while travelling in Australia in 2004, I tried my first real jog. At a slow pace, on a warm beach, I found I could run a mile, and planned to keep it up. It's harder in England because of the weather, but sometimes even that can be a bonus. Halfway through a day of code, it's wonderful to throw your body into a chilly hill run, with the sun breaking out as you cross the park.

In 2006, I'd signed up for the 2007 London Marathon, and had won a place in the ballot. This was great, as it's something like a 1 in 5 chance each time. After getting Glandular Fever, I deferred. It was only a month out, but quite a crucial month. You can only defer once for illness, but I knew I'd be fighting fit next year.

I can't remember whether it was June or July that I felt my throat swelling again. I had some swollen glands, felt a bit crappy, and had some ulcers in my mouth. I went to the doctor, who diagnosed Glandular Fever, something you don't get twice. I have realized that my doctors are utterly useless.

I also found through the summer that I was having problems, mostly with my legs. I attributed this to running. Maybe I'd overstretched myself, maybe I'd been running on a bit of a hangover, something like that.

It got quite bad. I remember waking up at nights with my legs hurting, and needing to stand up and shake them off. They felt cramped, like your muscles get before pins and needles kick in.

It then got worse. I stopped the running, or at least reduced the runs (bear in mind that I'm no great runner anyway - I'm a 3 to 4 miler, not Paula Radcliffe). But my legs would tire after a day's walking and shopping. I'd come home, utterly knackered, and beginning to get irritable, and just fall face-down onto the bed and just lie there.

You don't sleep. You just lie there, resting. Your muscles burn, and you can bearly lift your arms.

One weekend I remember. It was Saturday morning, and we walked from my girlfriend's flat in Camden to get coffee in Camden. That was it - I was done. We spent the rest of the day just lying in bed. I was too tired to even watch TV.

The irritation is bad as well. As you walk, your legs tire, but nobody can see it. My mind is crying out "WHY can you not SEE my legs are not WORKING!". You have to think about. Every. Single. Step. The destination.

On my way home from work, I've just had to stop. My legs wouldn't carry me any further and I just gradually come to a halt. I'll sit on the kerb or a ledge, but even bending down is painful. And you wonder. "How will I get home?" "Who can I call?". What do you do if you're three street from home, and for whatever reason you just can't keep going?

So you get up and carry on. Mind over matter.

So we turn, as is natural now, to the god of all things knowing, to the Internet. There are lots of varying reports of ME and Glandular Fever. There are believers and non-believers. I read a scary report saying that Glandular Fever was a mild illness, which is completely over in three weeks, and school children should be able to return to all functions straight after. My theory is that this was written by a gym teacher.

There are mentions of connections. It seems to be well known that one disease can lead to the other. This is not universally agreed. There is no treatment. One common piece of advice is to program the speed dial on your phone so you don't need to type in the whole number. Ye gods, this is the best you can offer???

So here I am, stuck with something that cannot be properly diagnosed, cannot be treated at all, and something which a large number of people don't really believe in.

It's been two years now.

It is something that comes and goes, and when it's gone it's great. Sometimes I even believe I could be free. It returns. It becomes something you think about every single day.

The most noticable areas are walking and standing. I can't handle it any more. I won't walk in the park with my girlfriend, or shop for more than an hour. I can't stand in line. I can't stand around with a beer after work, because my legs quickly feel worse and worse. You'll see me shifting my weight around nervously, and the next day I'll be shattered.

When a really bad flare-up occurs, there are always mouth ulcers, which seem to have a connection to the glands under my jaw, which swell up too. I can feel that. The ulcers and glands aren't a problem, or particularly horrific, but I do notice that they accompany a week or two of exhaustion.

There have been occasions when I beat this thing. I know I can't stand still for long, but jogging on a "good" day is fine. So I ran the marathon last year. I didn't get many practise runs in, but I'd done a few. We had a plan - while everyone else is standing around and warming up, I would turn up at the last minute and sit down until the off. I finished in five hours: a good time for a first time. A bloody brilliant time for someone with ME.

There are social awkwardnesses. The underground is a tricky one. I need a seat. I really do. But without a noticeable pregnancy, a colostomy bag or a stick, you feel somewhat silly asking for a seat, or jumping in without waiting in turn. Equally, I sometimes take the lift at work. Yes, for one floor.

I walk through the office as if the weight of the world is on my shoulders. Guys, it is.

"How was your weekend?". Well, I probably did one thing and then struggled through the rest in pain. I don't feel great about it. I'm sorry I couldn't go to your drinks/party/event. Truth is, I couldn't move.

But I'm a fighter. I've never taken a day off for it. Last year, I bought a house, finished a marathon and a degree. This year, I'll get married.

So this isn't a bid for sympathy. Like I say, it's just a record. Kenneth of the future, take note.

Some quick notes:

It's worth noting that I'm no athlete, and I've never been an early riser. I probably drink too much, and I whinge about colds and hayfever. I have weird wisdom teeth which can trigger ulcers on their own. I'm not a good patient. I am aware of all these things.

I'd say thanks to Agnieszka for helping me through everything, except that she's, er, right here, so I can do that anyway and don't really need to write it down. Love you. xxx ;)

I don't really understand the category of ME. I know it make sense to empirically group diseases by symptom, but surely one might get closer to a cure by actually examining a specific causal relation? If Glandular Fever causes ME, then let's have a look at the action of the virus in their glands and muscles during flare-ups? That's what House would do. It's not in the mind, my legs are physically burning like I've been swimming for ten miles. Surely that's observable?
Grouping people as "ME" is a bit like medically grouping everyone over 60 as "old".

Thanks for reading! I guess you could now share this post on TikTok or something. That'd be cool.
Or if you had any comments, you could find me on Threads.

Published 28 March 2009