MElvin and me

Hell(o)

One night in October 2013, I went to sleep and didn’t wake up. Obviously I did eventually, or I wouldn’t be here to tell the tale, but I slept past my natural waking hour, right through two hours of shouty arguing on the Today programme, stayed sound as local kids squeaked and squealed outside my bedroom window on their way to school. I slept through their playtime. I woke, heavy, syrup-soaked, aching, at 11am.  I had been asleep for 12 hours.  This didn’t unduly concern me – bit of a bugger to be that late for work, but hey, time to make up in the evening. I got up, had a shower and walked the three miles to my office along a magnificently autumnal Great Western Road. The following Monday night, I slept for 14 hours. On the Tuesday, sixteen. My son failed to wake me, shaking my shoulders as I ragdolled.  In January, after three months of intermittent sick leave, loss of muscle tension in my legs, pain that had started in my left shoulder radiating down my arm and across my collarbones, throbbing, making it painful to breath, a mind that had become tortuously claggy, my GP suggested I might be suffering from CFS (as GPs like to term it). I am an academic. I went back to University as a lone parent in my 30s, loved it so much I never left. I got a degree, a Masters, and completed a PhD six months early – the first to do so in my School at the time. I taught at both Glasgow and Edinburgh universities. I gave lectures, wrote papers, attended learned conferences where I felt a total fraud, but hey, they let me in so I went along with it. I loved it. I went out with friends; lunches, dinners, the cinema, exhibitions, the gym, late nights that featured a lot of alcohol, a lot of laughs. I moved house four times in six years as my children grew up, flew the nest, flew back again for temporary relief, went off once more. I got the life I wanted, I had the title, the job, and most importantly I had recovered and repaired from a toxic marriage. I was flying. I’m telling you this not to brag, but to show you who I used to be. Fit, energetic, keen, normal (ish), and really very happy. I became very, very sick. I got even sicker. I was advised this is not a disease you fight, not in the normal sense, for if you do, it will consume and destroy you. This didn’t fit with the ‘plucky Ellie raging against the world’ process I’d used to survive and thrive during a dreadful decade. This required….surrender. I don’t do surrender very well. Today, I live in relative peace with my disease – he’s called MElvin. He’s ugly-beautiful. He takes so much of my daily energy and minute-by-minute effort that I can’t work full time any more. I now spend my time determinedly working twenty hours a week in my dream job (my thesis is on domestic abuse and policy making, this is my first post-doc job directly related to it), crashing, then recovering. It’s a cycle I’m familiar with. My social life has contracted, but not disappeared. It’s mostly lunches, coffees, perhaps a drink after work. Sometimes there’s a little flash of Old Ellie, and the rage and frustration and sadness at things I have lost turns into ‘have at ye, ya bass’ and I go to the pub with friends and drink myself horizontal. MElvin extracts three bed-ridden days in payback. Serves me right, really. But I said he was ugly-beautiful. Some of that frustrated fury has translated into a swell of creativity, and I have begun to bake, to knit, to write – none to any great standard, but still, the things I produce from the tins, the needles, the words that spill out over the page, they say I’m still here. I’m still here. This blog is a record of my journey, now I have some equilibrium, and some understanding of the severity of my condition. I accept. That’s all I can do. But I’d like to remind myself of that, to have somewhere I can go and see the record of my existence. Look, yes, I’m still here. There will be socks. Buns. A little bit of political ranting. Actually probably quite a lot of that. There may also be cats. After much deliberation, I chose to call this place Somebody’s Empire, a modification of the title of a Belle and Sebastian song, Nobody’s Empire, written in direct reference to Stuart Murdoch’s own tussle with this illness. It’s optimistic triumphalism comforts and inspires me. I’ll putting it here once I work out how to do that, if you’d like to listen. This is my empire. You’re very welcome to explore it alongside me.

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My dark companion

I’m currently transitioning from one pain medication to another. It’s been challenging, to put it mildly. I’m now on the top whack of the new drug, and it’s proving to be useless. That’s six painful weeks of my life I will never get back. Which brings me to the first type of barrier to writing I, and many others, experience: physical.

Physically, I’m a bit of a mess. My left hand side of my body, from my nose to my toes, is affected by pain. And not just one type of pain, oh no! A whole symphony. My shoulder, from the back blade curving around to my collar bone, has a resident bone-crunching ache that veers from dull throb to scorch. What feels like lightening frequently strikes my upper arm, and the odd zap zips down to my elbow and wrist bones, making my arm jerk and me wince. I get pins and needles in my lower arm, so severe that I think I’ve inadvertently set fire to myself. This riot of nerve activity culminates in tingling fingertips. For me, thankfully, this is my main seat of pain. Understandably, this makes my left arm feel considerably weak, and my leg behaves sympathetically, with a dicky knee that threatens to give out on me without warning and muscles that feel like overcooked spaghetti. My feet – not wishing to feel left out of all the fun – burn like the fire of hell, but only when they are not experiencing an Arctic ache, deep and solid and beyond relief.

***There has been a four day pause here because I had to stop typing due to the pain.***

I’m tempted to end this post here. It sort of made its point when my collarbones flared. However, things in the last couple of days have been better, presumably due to the new meds (the jury remains hung – these powerful drugs don’t come without a price tag, a check and balance of relief versus persistent side effects).

There are options for those in chronic pain with a bit of cash: a voice recorder, for example, to dictate what they want to say; voice recognition software is (I believe) improving all the time. I find the voice recorder great for capturing a fleeting idea or phrase, but not so much for whole pieces of writing – but I am practising with it. These sorts of workarounds can work for some, and they do overcome the critical issue of physical positioning. Sitting at a desk, or even upright in a chair with a laptop open in front of you is frequently impossible for those with a fluctuating condition, or for those who are bed bound. I am often physically positioned flat on my back in bed, which isn’t much good for using a keyboard.

Finally, there is an existential component of pain that is hard to describe to anyone who doesn’t live with it. Discomfort might fluctuate, as mine does, in which case ‘good days’ become high day and holidays, woo hoo, check me out with the functioning arm and steady leg, pale pink tootsies and normal breath rate! But it’s always there, in the background, lurking. Chronic pain lives like a worm in the brain, reminding you, even when you are full of child-like agoggery at your ability to indulge in the mundane normality of washing dishes without wincing, that it will return. It might be in an hour, it might in a day, but it will be back. I co-exist with pain, whether or not I am actively experiencing it. It’s there, even when it’s not. It colours my days and nights, casting a permanent shade over life. Everything, every activity or decision, is calculated in this light. It’s this pall, this veil that clouds my view, which often informs my ability to write more so than physical restrictions – like I say, there are workarounds for those. But there are a clutch of cognitive, psychological, much more ephemeral issues like the companionship of pain that I can’t find workarounds for… more on this later. I need a tramadol.

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How time flies

Well, hello, here I am again. It’s been a while, that’s for sure. I know I set up another blog to follow on from this one as my diagnosis (and prognosis) changed, but I can’t remember its name, and I can’t be bothered searching. I’ve decided to come back to this one since what I want to do is write a bit about writing.

First, a quick catch up: since last we met, I’ve experienced several major life changes that had the potential to drive me potty, and indeed they did send me round the bend and up the wall. My diagnosis has changed to one that predicts a more permanent state of affairs in terms of my physical condition (I now use a stick when I can manage to walk, wheelchair ‘occasionally’, but not as much as I should, and a mobility scooter to get around) and there has been some marked degeneration in my condition, meaning I can’t lift, carry, hold and manipulate things with my left hand as well as I used to. I’ve got a couple of new symptoms, but one or two others have graciously faded into the background.

Then I moved house. A  physically, mentally, psychologically bruising process that landed me in hospital the day after the move with an unidentified but massive allergic reaction to something or other. I was sick for a further two weeks. This was followed, after a month or two of tootling, by a friendly chat with the GP who felt it was wheelchair time, and – in quick succession – a nasty bout of trigeminal neuralgia and a vicious bowel infection that floored me for almost five months and from which I am continuing a struggling recovery.

But to the purpose of my visit here….I’m back to writing. It’s been a very long time, and it’s a very cumbersome and clumsy process, but I’m attending a creative writing class weekly, and I feel my imaginative output can only be helped by writing the occasional blog. Here’s the thing though. Writing is hard for me. I have tried and tried to find the right words in the last few years that might explain to anyone not inside my head *why* it is so hard. “Oh you can write instead”, people say, “you must write”. But the process of writing extracts so much juice, every tiny last drop, till my pips squeak surrender.  So I started there. I sat down to write a piece on why I find writing difficult. Being a pesky academic, I began slotting my jottings under headings, and before I knew it, I had four pages of notes – on the first of a list of obstacles. So I’ve decided to do a series of blogposts on the difficulties of writing – from my own perspective but they might chime with other chronic lads and lasses experiences. Understanding is, maybe, the first step to overcoming. [I wrote this on the Glasgow to Edinburgh bus – the return journey – could this be part of the answer?]

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On resting…and not resting

So here I am, many months after starting out on my blogging journey, and many, many days of failing to post, finally doing so. I am finding that ability to write rests on the serendipitous convergence of three resources: time, energy, and motivation. For the healthy, these convergences happen often, frequently; for the Meep, they are a rare and precious occurrence.

One of my big observations from the last few months of holistic navel gazing is that I am doing resting all wrong. In short, I am doing it like a healthy person. I am doing it in response to activity expended. I am doing it in order to recuperate or to bank energy. I am doing it because I think if I do enough of it, my old self will magically appear – I am doing it because I think it will cure me. This is entirely wrong headed. One of the diagnostic touchstones of M.E is exhaustion unrelieved by rest. This sets it apart from episodes of mere fatigue among Peeps, however debilitating that might be (and, when coupled with a staggered activity=payback relationship, from Chronic Fatigue Syndrome, if one wishes to split categorisational hairs). Those words are critical. Those words should have jumped off the page and slapped me across the cheeks long before now, but they haven’t. Unrelieved. By. Rest.

I have been working hard on redefining ‘activity’ to include such mundane, everyday stuff as washing my hair or writing an email, and ‘healthy’ in my personal context to encompass an overarching  sense of general wellbeing and sustainable contentment. This is good stuff, good *work*. I have also been struggling to view my energy contained as it is now, in a new, considerably tinier pot, and to use less of it accordingly. But resting? It’s been left entirely out of my equation. Resting is the after-activity, resting is what you do to revive and reinvigorate. Well, not any more it’s not. If I am to survive, to thrive even, resting – proper physical and mental shut down resting – has to become the prologue not just the epilogue of my days, as well as regular footnotes punctuating them all the way through.

So I write this from my bed, propped up on pillows, electronica, paper and piles of wool around me. I probably won’t do any less than I do on a couch-day, but the very act of lying here grants me the grace to say to myself, with peace and non judgement, ‘I am sick. And I am resting’.

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Fanny-ing about in the kitchen

Blazin’ beaters

I was hacked off in the extreme today, as anyone who encountered my expletive splattered Facebook can confirm. MElvin shot toys out his pram and dummies out of his mouth like machine gun bullets, most of which I seem to have caught on my left shoulder and collarbone. Blimey, I hurt. My plans and intentions lay ruined at my thermal-socked feet.  So I decided to bake my bitterness.  Not literally, you understand, and I meditated first, naturally, describing my troublesome emotions to the nifty little app that tailors my meditative needs to my contemporary emotional state; very in-the-moment.

My original plan was to do a test batch of a rather odd recipe I’m preparing as a gift to a couple of lovelies who have saved my smouldering bacon on several occasions in recent weeks.  As a result of their gentle virtual head-slapping and bootstrap-grabbing I remain at liberty in the community. However, I lacked a vital ingredient for said recipe and three hours of trying to will strength into my limbs, stamina into my muscles, and conjure up the cognitive wherewithal to organise and execute a four-bus round trip (of what is a twenty minute walk) failed. I compromised. I got clever. I opted for a fifteen minute hobble via the local shop to pick up a low-running mundane baking necessity (daily mobilisation therefore not becoming deconditioned: TICK; feeling like I’d not only run but won a full marathon for an hour after getting back home: DOUBLE TICK). Then I googled all-in-one bakes. That is, chuck everything in a bowl, batter it all together with an electric whisk, bung it a tin, stick it in the oven. Result: date and walnut honey cake. It is delish. Though you’ll just have to take my word for it.

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Hate speech is not knowledge

Utting-Wolff Spouts

One of my special interests is knowledge production: how do we create knowledge and how is that knowledge then perceived and received? Bear with me, this is not empty waffle, I assure you. Think about it for a moment, how do we know what we know? We can only know what we know when others validate that knowledge in some way. It is in the application of knowledge and in our actions knowledge will reveal itself. Of course I am biased, I have an epistemological standpoint that can roughly be explained thusly: knowledge has to be meaningful in order to make sense. Without sense, there is no genuine knowledge.

Upon reading through Professor Shorter’s work[1] (Shorter’s original, vitriolic, article in Psychology Today had been removed) it becomes obvious to me that he is a privileged man who speaks from a privileged position of power. The bias shines through via the…

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