Living with CFS/ME: A day with a hidden illness

Living with CFS/ME: A day with a hidden illness

Back in 2000, I came down with an acute case of CFS/ME, commonly known by dickheads as "Yuppie Flu". I was housebound for a year, constantly on painkillers which didn't work, and often unable to get out of bed. The kicker here is that my case was comparatively mild - friends of mine have been wheelchair-bound, or even completely bedbound, for even longer periods of time.

The wonderful thing about ME is that it's a gift that keeps on giving. Generally, a sufferer will pick up an annoying viral illness (often infectious mononucleosis, known as 'glandular fever' in the UK, or 'Mono' in the States). That will clear up, but for reasons unknown the body will experience a postviral syndrome. The first time it hits you, it's like having all of your energy taken away from you, and you feel like every organ in your body is shutting down. It left me with IBS, an embarrassing, unpredictable and sometimes surprisingly crippling condition. It also left me depressed.

When I first came down with it all, my parents ended up calling my GP for a home visit. He poked and prodded me for a few minutes before declaring that I was faking it, loudly and in front of me. I didn't have the energy to argue. Fortunately, my parents believed me - but if they had trusted the person with medical training over the crying child, as people are generally taught to, my life could have quickly become unliveable.

So, here we are, eleven years later and I'm still not the person that I was in 1999. Chances are that I never will be. Fortunately, leaps and strides have been made in convincing people, especially GPs, that CFS/ME exists. The EU have ratified it as a disability. I'm lucky enough that, due to the comparative severity of my condition and the thoughtful people that I'm lucky enough to work with, I can scrape by and hold a job without having to get myself certified as disabled and rely on the state - but others aren't.

I want to take you through a normal day. CFS/ME sufferers have good days and bad days like any other condition, but I'll try to average things out. Also, bear in mind that this is a normal day for me, and should not be considered to override anyone else's statements about how they are affected by CFS/ME.

I'm not going to let TMI get in the way. In particular, this is going to involve my IBS and my sex life. If you're going to be squicked, don't read on - or, if you do, skip the bit headed "The bedroom".

Waking up

One of the diagnostic conditions for CFS/ME is fatigue that is not improved by rest - no matter how well I sleep, there is always a baseline of exhaustion. For extra hilarity, CFS/ME often brings insomnia with it.

I set my alarm well in advance of the time that I need to get up, because I know that my body simply will not get involved until my sleep phase allows it. Even when that happens, I'll be drowsy and confused, and not necessarily understand that the alarm is going off. It's like being the drunkest that you've ever been. If I've got someone sharing my bed, I'll have asked them the previous night to do what they can to wake me up when the alarm fires. If I'm on my own, I'll have to hope that one of the five different alarms that I have, staggered by a few minutes each, wakes me up.

When I'm conscious, I will have a headache and it won't be a trivial one. It will either settle down after a couple of hours or drop to a low hum. What it won't do is go away; I have had a low-grade headache for eleven years.

About ten minutes later, my IBS will begin to flare as my body resumes normal operations. I'll generally need to spend anything between 30 minutes and two hours on the toilet as my intestines cramp up and decide whether they want to get rid of anything.

After this, I'll throw on my clothes and get ready to head out to work. Frequently, I'll be running late. As I said, I'm lucky enough to work with sympathetic people; others aren't, and end up losing their job and finding themselves with no alternative but to go on the dole.

At work

My IBS will be at a relatively low level for the rest of the day. I'll have to disappear to the loo a few times for an hour or so, but otherwise it's manageable. The real issue during working hours is the fatigue.

I drink coffee and energy drinks not because I like the idea of constantly consuming stimulants, but because I have to if I want to stay able to do my job.

Come about 3pm, I'll be practically dozing off at my desk. My employer allows me to take 20-minute naps when necessary on the understanding that I don't take the piss. Without them, and at previous employment when this hasn't been an option, I've had to literally prop my eyes open with my fingers. My cognitive skills disappear. My coffee consumption goes up.

Getting home

I will fall asleep on the bus home - which is why I've found a bus that terminates in proximity to my flat. Going out is not an option. Perhaps someone will come round. Quite often, I'll have to cancel on them because I don't have the energy to be social.

If someone does come round, I'll keep my energy demands low and manage to get by. If someone visits that I'm involved with, and we end up in the bedroom, things start to get interesting.

The bedroom (aka, The Bit With Too Much Information)

One of the symptoms of CFS/ME is depression. Whether this is directly chemical or induced by the fact that every day is an uphill struggle I don't know, but I am depressed like many other sufferers. I take an SSRI to help with this. It has side-effects, of course, but it lets me control my mental state a bit.

Two of those side-effects, that I do experience, are anorgasmia and occasional impotence. I've always had quite a large libido, and while the SSRI hurts it, it's still there. I'm not too bothered by the fact that my ability to maintain an erection is variable - there are other ways for a guy to enjoy themselves sexually with a partner than with their penis, and it's not a constant state so sometimes everything works as intended.

The anorgasmia, however, really bugs me.

I can reach orgasm by myself, though it takes a long time. I can't through stimulation by a partner at all. My own orgasm isn't a huge deal to me during sex, but I can see it in my partners' eyes that if they're unable to bring me to orgasm it makes them feel somehow unsuccessful, and that hurts.

Sleep

Before bed, I'll take some painkillers to dull the headache a bit and let me get to sleep. I'll open all my windows because CFS/ME almost obliterates the human body's ability to regulate its own temperature, and I tend to run hot.

It'll take me about two hours to get to sleep, unless the insomnia kicks in.

Rinse and repeat

And then it all starts again. Over and over. Every day is the same.

I look forward to the weekend. Not because I get to go out and have fun, but because I don't have to head to work and I can conserve my energy. Once every couple of months, I'll go out to a club with some friends. I'll pay for it with a worsening of all of my symptoms for a couple of weeks, but it's worth it because otherwise I'd go stir-crazy.

I don't want to whine and play for sympathy. That's not what I'm trying to do here. I want people reading this to understand that for a CFS/ME sufferer, every day is a new fight, and I wanted to give my own personal experience along with the caveat that I have it comparatively mildly. It is a real illness and it's a life-changer.

To say that CFS/ME is 'just being a bit tired' is akin to saying that kidney failure is 'just having to pee a lot'.

Dave Williams

Dave Williams

https://dave.io

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