Well fancy seeing you here...

Hello and welcome to the rambling rollercoaster of useless ponderings, strung together in what the internet calls a "blog," and the voices call a waste of everyone elses time.

Please check your sanity at the door (along with your dignity, logic, principles, good taste and prejudices against daftness.)

"I am here to seduce you into a love of life; to help you to become a little more poetic; to help you die to the mundane and to the ordinary so that the extraordinary explodes in your life." -Bhagwan Shree Rajneesh

Friday, 14 May 2010

The Importance Of Being Idle

It’s M.E Awareness Week, and one group of sufferers is organising a march to highlight their campaign for more research into the illness. While I support the cause, I can’t help but think they’ve failed to fully consider the implications of their chosen fundraising method. With a strategy straight off’ve The Apprentice, they’re urging sufferers of M.E/Chronic Fatigue Syndrome to join their mini-marathon, to draw attention to the difficulties faced by people who are often so tired their mobility is restricted. Next week I hear they’re helping out with the sponsored Archery at the local School for the Blind…

The Guardian has attempted to do their bit by publishing two articles about M.E/CFS. The first flits between being so incomprehensibly scientific that the majority of their readership wouldn’t bother to look past the first paragraph, to denouncing M.E campaigners as radical nutcases. There’s very little worthwhile information in the article, which basically tells people that an American charitable trust believes M.E/CFS is caused by a retrovirus, but that independent and governmental scientists have failed to replicate their findings. It’s amazing just how much they managed to write about the fact that they’re still none the wiser – but following the assisted suicide of Lynn Gilderdale by her mother Kay, Chronic Fatigue Syndrome is still a hot-topic.

During the trial and the accompanying peak in media-interest, I was infuriated by the ignorant and incredibly biased coverage, which presented it as a terminal illness, or disease with no hope or potential for management. This is, of course, ridiculous. I’m a living testament to the fact that it is entirely possible to be certifiably-knackered and yet still make enough of a nuisance of myself in the world for my life to have some meaning. Lynn Gilderdale’s case was extreme, but her desire to end her life stemmed from a terrible depression, which was influenced by – not the sole result of – her M.E. Since her tragic case (extremely rare in terms of severity) hit the news earlier this year, I had yet to hear a medical or media professional make any of those points clear. In the first of the guardian articles “The Trouble With ME”, amidst the irrelevant information and radical opinion, one consultant does offer some sensible thoughts:

“Alastair Santhouse, consultant in psychological medicine at the South London and Maudsley NHS Foundation Trust, was deeply concerned by much of the press coverage, which depicted ME/CFS as a terminal illness and wrote to say so in the British Medical Journal. "It was being talked about in terms of the euthanasia/assisted suicide debate," he said. "It is an awful illness – chronic, unpleasant and very isolating – but it is not a terminal illness. There are treatments available and they are not perfect but we as a profession should not be giving up on people.”

The second of their articles is billed as a “first person account of living with Chronic Fatigue Syndrome” but is misleading for its brevity, though with the best of intentions.

The truth about life with M.E/CFS is a little more balanced – which of course is often far too dull for the British media! Yes, there are dramatic lows, which would probably elicit a couple of hundred pounds from Take A Break magazine if every desolate detail were exploited in full. It just wouldn’t be a very fair picture of life with M.E/CFS, which is the thing sadly lacking from the illnesses recent surge in popularity.

I began having clear problems with fatigue ten years ago when I was just 14, and failed to recover as expected from the serious illness which had blighted the previous two years of my life. No one could understand why I wasn’t showing signs of improvement when I should have been, and it became clear that the fatigue wasn’t simply a symptom of medical-malaise, but was a distinct issue in-and-of itself. M.E/CFS is more than just fatigue, it is a collection of rather nondescript symptoms which vary from person to person, but are very much centred around being incredibly tired.

The fatigue is a soul-crushing exhaustion, the like of which I have never experienced as the result of a long, hard day. It isn’t the sort of tiredness you get after a terrible day at work, or even after an extra-tough slog in the gym. It’s a mental and physical weariness more akin to the debilitating weakness you feel when you have a really bad case of the flu, or the worst hangover you can imagine – only without any of the fun the night before! The fatigue is complicated by severe aches and pains, which make muscles tremble and bones feel like they burn alternately with fire and ice. Also headaches, confusion, inability to concentrate, nausea, sensitivity to light, dizziness, lack of apatite, poor memory, and a raft of other issues mean that to some extent every day has to be negotiated through that fluey-fog. What marks out a good day is the ability to do normal things in spite of it, because it fades enough to be manageable after a few hours of being awake. On a very bad day, it doesn’t fade at all. Next time you wake up on a cold day, feeling rough, and you are so desperate to go back to sleep that – for a few seconds – you honestly can’t envision how you will drag yourself out of bed, imagine what it would feel like if that desperation lingered all day. If there was no way to shake it off with a shower, or a bit of willpower. How would your life change, if that overwhelming need for slumber was the overriding feeling for more than a few minutes, and you couldn’t muster the physical or mental energy to move yourself out of bed even if it were on fire around you?

That’s what most M.E/CFS sufferers have to contend with every day, some for a few minutes, and some for weeks or months at a time. I consider myself lucky that, in general, only the first hour or two of every day is like that for me. On a bad day when it doesn’t recede, I’ve known it take half an hour before I can force myself out of bed – which might not sound like much, but trust me, it’s really annoying on a day when you wake up needing a wee!

All that, when viewed on its own, quite obviously makes life incredibly difficult, but that’s not the whole story. Yes, it certainly makes even the most mundane day-to-day living more of a challenge, but does not make everything impossible. People are adaptable creatures, it’s what has helped us colonise the planet and remain at the top of the food chain for millennia; growing and expanding as we develop new skills and behaviours. Such is life for someone with M.E. For every symptom that creates issues, there’s a creative solution being implemented by somebody. Plenty of people manage a variety of incapacities without allowing their lives to grind to an agonizing halt. Amputees use wheelchairs or prosthetic limbs, ugly people get jobs on the nightshift, and those with M.E/CFS find ways to work around their constant fatigue. Tiredness this severe is a disability, but not a hopeless one. Admittedly, at its worst there is nothing to be done but surrender to it and rest – but at other times a moderate approach allows for far more normality than many people would envisage. Many sufferers have families, many others manage to hold down jobs - they just do it all with that fluey-fog lingering overhead, finding ways to get around the difficulties they face when their illness clashes with their aspirations or responsibilities.

The best explanation for the energy-compromise we all make is “The Spoon Theory” – written in the early part of the century by Lupus sufferer Christine Miserandino. (It can be read online here, and I really, really recommend it.) The condition she has is different, but the management is the same. People with M.E/CFS have a limited number of units of energy per day, and even the smallest tasks cost units. Getting out of bed? 1 unit. Showering? Another unit. Getting dressed, hair and makeup, making breakfast, eating breakfast, watching morning telly… All individual units expended before you’ve even left the house in the morning. Once you’ve used up your full reserve of energy, that’s it. You’re exhausted and couldn’t do anything else even if you had the mental energy to want to - which, if you’ve run out of units, you simply don’t. Most people begin each day without knowing exactly what they’re going to do, open to the possibility of spontaneous ideas or activities. Those with M.E/CFS don’t have that luxury, or at least not without having to trade off on the other things we might have planned to do.

I manage my fatigue by working from home, having a laptop not a PC, being incredibly anti-social when going through a bad patch, and taking to my bed to rest whenever possible like a spoilt Victorian aristocrat. I know that if I have a busy day ahead, I have to rest up the day before, and write off the day after, in much the same way others would prepare for a marathon drinking session to celebrate a birthday. You know you’ll pay for it after, but that’s a compromise you decide you’re willing to make.

All of that adds to the complexities we are all faced with when going about our lives, but it certainly doesn’t mean life is in any way “over”. Unfortunate as it is that there are people like Lynn Gilderdale who never find a way to live with their symptoms, they are in the minority, and the message that it is possible to have a life and a disability is one that needs better representation in contemporary media. Until we understand the causes of M.E/CFS, the least we should do is report a balanced take on the consequences faced by the people living with it.

Now I’m off to lie down, because I used up a unit writing this blog post, and have to have a rest before I can get my lazy backside downstairs to make the cup of tea I am yearning for. (Yes, this was as much of an endurance-test to write as it was to read). On second thoughts, as you'll be needing tea of your own, you can make mine too. Go on! It’s M.E Week! I’m the centre of attention here. Me, Me, Me, Me, Me.