Hello! My name’s Barnaby Eaton-Jones, but that’s my problem.
I’ve had M.E. since 1991, so that means I’ve been unwell for longer than I’ve been well. This, as you may imagine, is described by me as ‘a bit of an arse’. Which is somewhat of an understatement.
So, picture the scene – a young, lithe, handsome man, with the intellect of a Greek philosopher and the physique of a Greek God. Then, look just behind him and there’s me pulling faces behind his back. Yes, I don’t think I took anything seriously until this nasty illness grabbed me by the lapels and pinned me up against a wall, like a school bully. I had just finished my GCSE’s and was excited at the prospect of Sixth Form (no uniform, woo-hoo!) and A-levels. By 1992, when I sat my exams, I was lethargic, suffering from severe anxiety brought on by not knowing why I was so run down, and had gone from being an energetic Tigger to a shuffling Eeyore. It was all a big Pooh. If you’ll pardon the analogy.
My Mum remembers the moment when she realised quite how unwell I was, when she argued that my 17-year old self should pull myself together a bit and get to the bus-stop and catch my morning bus to my Saturday job. Half an hour later, my Dad drove off to do some work and he saw me fast asleep in the bus-stop. Some people might have called that ‘lazy’ but luckily I had parents who were incredibly supportive, as well as a sister who took time off school and then work to regularly be with me back when I struggled to do more than lie in a bed or on a sofa.
But, you know, I paint this picture with the full knowledge that there are many who are so much worse of than I am. I regained some sort of normality and, though I have never recovered, I’ve managed to push myself to my limits to do things that ‘normal’ people would take for granted. So, I’m always aware how ‘lucky’ I am.
I would often channel any spare energy I had into creative outputs, two of which I’d just like to boast about now. I mean ‘boast’ in the most modest of terms as both of them have evolved into something that – if you fancy buying one or the other – benefits the charity Invest In ME. The first is the most recent. It’s a book of black humour/horror, in the style of the adult Roald Dahl, which many authors have kindly contributed to for free. If your brain is wired towards the darker side of life, then ‘Tales Of The Female Perspective’ might be the perfect anthology for you. You can grab a copy from www.chinbeardbooks.com. Whereas the second thing I’d just like to cheekily advertise (and I used the word ‘advertise’ in the Invest In ME sense, as I don’t make a penny off either of these – all the money goes to the charity) is the musical play I wrote way back when I was trying to fathom out why this illness was so misunderstood and misrepresented, ‘Running To Stand Still’. It’s a sort of compressed morality tale with a bit of humour and a lot of original songs. I wanted to show how this illness affected those around the sufferer as much as it affected (and often changed) the sufferer. It toured schools and colleges, to try and raise awareness, before being the very first play ever to be broadcast on BBC Radio Gloucestershire and won Best Original Play in a county Theatre Festival. On the twentieth anniversary of the first performance, I released a new adaptation on CD, with a new and professional cast, which is something you can still buy and is – again – in aid of Invest In ME. You can grab a copy from the Shop section of www.barnabyeatonjones.com.
So, there we go. That’s where I am. Not recovered but coping as best as I can. I’ve made friends with sufferers who are worse than me and better than I am. It’s been a long, arduous road and I’m still walking it as best I can. The recent advancements in research and the sloooow realisation by governments, scientists and doctors that this is a real illness is encouraging, though the media are always quick to label us all as lazy layabouts that can’t pull ourselves together or offer some miracle story of a person curing themselves by running marathons or bungee jumping or the power of prayer. Sadly, this is where the grey area in the illness takes hold, as those people surely never had this in the first place. There’s a difference between post-viral fatigue and the horrific array of symptoms that go far behind that with M.E. – so, their struggle was just as real and horrific but their bodies have managed to recover. Sadly, M.E. patients rarely get that release and it’s a life sentence.
So, do your bit. Fight the cause. Raise awareness. Donate to research. Those that are too unwell to be heard use their energy to be heard, which is a horrible irony but – in this day and age – is the only way to stand up and be counted. We’re all together. We are legion. We are the foot soldiers and, in the future, we’ll be respected for the fight we fought and, hopefully, the war will be won. One day.
Barnaby Eaton-Jones
Aged 42
A Walking Chinbeard
*HAPPY BIRTHDAY BARNABY FROM YOUR FRIENDS AT LET’S DO IT FOR ME!*
‘Tales of the Female Perspective’ –
http://www.chinbeardbooks.com/charity-beard
Tales of the Female Perspective also features on our fundraising bookshelf here.
‘Running To Stand Still’ –
http://www.barnabyeatonjones.com/apps/webstore/
Our Running To Stand Still page here. RTSS can also be found in the Music and Audio section of our fundraising shop here.
Let’s Do It for ME Movember Awareness of Men’s Health –
https://ldifme.org/nomenbar-for-m-e/