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How To Be Interesting

At the weekend, I was blessed with an unexpectedly ‘good’ day. What that means in practice is that I woke up feeling as sludgy, stiff and achey as usual, drank my coffee, piddled around on FB, writing websites (I read a lot more about writing than I ever spend doing it) and daily dharma posts for an hour or so till my stomach felt ready for food. I ate a tasty breakfast prepared by The Boy, and took my morning meds. There followed a further hour as I rested in bed, doing much the same as already described, while the painkillers settled in, and by that time I have gleaned enough information about my unholy trinity of currently-most-debilitating symptoms – pain, fatigue, and noisy, discombobulating head zaps – to work out what level of activity I might aspire to.

So, after two hours, toast, tea and tramadol, I surmised this was a day that I could feasibly get up. After washing without feeling the all too familiar lurch of nausea that accompanies the zaps, I decided it was also a day I could safely put clothes on. Success! On such days, from thence forward, anything I do/achieve is a bonus, so rare have been days when I’m not wearing a duvet and bedsocks combo. The Boy came through looking glum.  He had one of his headaches.

I am a person with a chronic illness living with a person who has a chronic conditions. The Boy has asthma, bad enough to require daily puffs on two different inhalers. To make matters worse, he also suffers from what is unfortunately a familial trait of cracking headaches (actually, we have all suffered from migraine – my genes apologise, kids). He gets a few every month, and they knock him off his feet, requiring regular paracetamol and a restful day lying in his darkened bedroom, dozing away the pain. That’s ok, I said, it’s coincided with a decent day for me, so get some paracetamol down and pop off back to bed. I’ll do the dishes.

I did the dishes. I decided to tidy up the kitchen too. So I emptied the house bins, took them outside, sorted the recycling, dumped it into the correct buckets, then thought wait, I must pace. Sat down, had a cup of soup and some crackers, did a ten minute guided meditation and thought, gosh, this room hasn’t been hoovered since the tree came down… I’m not going to detail every bit of everything I did on Saturday. Because although for me this constituted a day to be starred in the diary, I’m acutely aware of what a drag it is for people to read what is essentially a description of very mundane, routine, household tasks. Things healthy people do every day, without a second thought. Unless the second thought is ‘God, I hate housework’.

So that got me thinking about one of the major obstacles to building a sustainable, rewarding life when one’s world consists, more or less, of a few rooms and small garden. How can I hold onto friends, relationships, when my daily life largely revolves around me, me, me: eating, drinking, meditating, stretching, resting, all solo and with my own health in mind.  How do I offer an equal friendship when I have so little to talk about? Never mind that I’m hobbled by the inability to participate in things that create shared memories – going to the cinema or theatre, exhibitions, out for birthday meals, going to dinner parties, even staying awake for the New Year Bells – or to do the little favours that cement connections, like getting joyfully hammered when someone gets a new job, or staying up all night with a pal to diss mankind when her partner misbehaves. When friends call me or come to visit, the most obvious second question after ‘how have you been’ is ‘what have you been up to’. I do like the suggestion of subversive mischief in that second query. Unfortunately, the answer is becoming a bit of a broken record. I’ve been in bed. I’ve been on FB. I’ve watched a lot of telly on every terrestrial channel, plus Netflix, Amazon, Now… I’ve listened to audiobooks. Drama and documentaries on the radio. Podcasts. I’ve probably knitted something new since last I saw them. If it’s been a good week, I’ve managed not one, but two showers and washed my hair. If it’s been a great month, I have hoovered.

Obviously I’ve been feeling the absence of a big, spiky stick to beat myself with recently, because this has been on my mind for a while now. The worry that I’ll be bored by a life limited to the size of a mattress has tilted a full 180 degrees and I find myself worrying that I myself will become the bore. The things I valued about myself have evidently diminished, I feel the effects every day. I can’t think acrobatically at all, I need a good ten minutes to write some stuff down and let it percolate, painfully, drop by drop, through claggy mental filters. My wit has dulled. There is nothing worse than starting what I think is a hilarious riposte, to find that I’ve lost the second half of the sentence and am reduced to muttering, pink-cheeked and foolish. I forget important dates my own, never mind other people’s – so key events in their lives drift by, and the most common opening in my text messages is ‘I’m so sorry!’.

This isn’t a cry of anguish at all. I really do appreciate how lucky I am, not only to have a close and loving relationship with my adult children and to live with my very caring son, but to have good friends who remember me as I was and appear to be handling (and excusing) my verbal and mental regression a lot better than I am. Basically, despite the changes in my body, to my mind, the fundamental fear we almost all share remains. That is, I don’t want to die alone. And if I am unable to sustain friendships (or even, beyond my wildest fantasies, a loving relationship), that is what I dread I am destined to do. So, as if I haven’t enough in my knapsack to weigh me down already, I’ve added a bit more. Not just how can I prevent myself from becoming bored (and lonely), but how do I prevent myself becoming boring … and lonely.

I have no easy answers, says the Universe. Well cheers, say I.

 

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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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Becoming ‘disabled’

Recently, I discovered that what I’ve been ascribing to personal failure (laziness) or a compounded consequence of my symptoms (fatigue+pain+brain fog) actually has its own name. It’s a discrete and commonly reported symptom that afflicts people like me with neuroimmune illnesses and disorders. It’s called lack of initiative, or lack of impetus. This is not initiative in the sense of having an idea to do something – those I have aplenty – but in terms of being able to instigate, to make a start, and then to persist at something, and (this is the crucial bit) this is irrespective of whether an activity is enjoyable and rewarding. My particular frustration is with writing. What used to be a hoot and a skoosh, with a solid day of writing being healthy-me’s idea of heaven, has become a source of self-criticism and punishment. Being unable to describe to my healthy pals the process by which I have been repeatedly failing to write consistently is horribly frustrating. I don’t have the words to describe how it feels to want to do something, but the messages being fired out from the brain just wither and fade before my hand can reach for a pencil. The very act of picking up that pencil takes on huge significance, absorbs my focus and attention, and subtly, slyly, energy leaks out of my battery as I try, by iron will alone, to make myself do it. Just pick the pencil up. Just pick up the pencil. Write a sentence down. Just one sentence. Then another one will come along. Just one sentence for today. Go on, you’ll be able to tick the ‘writing’ box in your bullet journal. People will stop nagging you. One sentence. OK, look, if that’s too much, just write down a word or two, just to capture what’s sitting perkily right smack bang in the middle of  your mind’s eye. That phrase, that clever little bit of linguistic acrobatics. Go ooooon. You don’t need to do lots, no need to build a whole wall – just one brick. Hey, let’s call it a pebble, and tomorrow there will be another one. Tiny pebble. A totie, tiny, speck of a pebble. Reach over and pick up the pencil. And thus, an hour, then two can evaporate, and still the page stays blank. At least now I have a name for it, and I can feel less alone, knowing that this is symptom as solid and serious as the pain, the numbness, the muscles flickers.

So I’ve been thinking about writing this post for months, ever since I took the decision to use a wheelchair for purposes of perambulation (wait, is that an oxymoron?). In the first heady days after getting the NHS-prescribed electric wheelchair, I thought I really ought to record my initial thoughts, because becoming a wheelchair-user is surely one of life’s momentous tipping points, a transition has occurred, an identity transformed. This momentous moment ought to be analysed, recorded and shared with the world. Except I haven’t been able to so much as reach out for that pencil. Today, I have managed.

What’s it like to use a wheelchair? Completely terrifying for the first few days, then great fun. There it is in a nutshell. Well, that’s what it felt like the first week I used it… Starting from square one, as it were, people tended to respond to the news with worried sympathy. I had to explain that my decision to use the wheelchair was not due to a deterioration in my ability to walk; the fact is, that’s been consistently rubbish for almost five years now. My muscles feel weak and watery, my legs tire out within a few minutes, I suffer from dizziness when I move my head around in order to map my location on the street, and for a reason I don’t fully understand, walking and standing combined seems to consume vast quantities of energy. I frequently got home in a semi collapsed state, needing assistance to get onto the bed to rest. It wasn’t great, as ways of living go. So I made a proactive decision, in consultation with my GP and the NHS physio who decides whether or not a chair is appropriate, that if I could reduce the distance I walked and stand up (and still) to as little time as possible, that might just allow me to use my energy on other, more life enhancing activities. Like, er, writing.

This has proved to be entirely the case. It’s a resounding success. I’m glad I didn’t write this post in the early weeks of using the chair, because it’s taken a while to really appreciate the impact it’s had on the state of my body. I do have more disposable energy – bearing in mind we’re starting from a pretty low point. Improvements that I appreciate include having an extra shower each week, putting clothes on a couple of days more often, and enjoying time sitting in my living room. It has also taken me places I really couldn’t go much before, like down to the chi chi cafes of Byres Road and the yarn heaven of my favourite wool/cake shop with something approaching regularity.

It’s not all brilliant, of course. And a few more unpleasant incidents have deepened my appreciation of what it’s like to live as a disabled person in our society. You really do have to have a good measure of self possession to use a wheelchair. People will look at you, and they will look at you differently. That can’t be denied. It took a little while to get used to this, and it was during one particularly uncomfortable bus journey I cracked what was going on. The reason buses can be awkward is that you a) hold up the journey for everyone else, as the driver gets out and folds down the ramp, b) there’s the potential to really screw up some poor mother’s day, by having her and her offspring chucked off as wheelchairs take precedence (by legal decree, it turns out), and c) you have to reverse something the size and dimensions of a washing machine into what feels like a shoe box. Facing backwards. Looking at everyone. It is stomach-knotting in ways you can only imagine. So there I was, doing a twenty-six-point shuffle to squeeze the perfectly bog standard NHS-issue wheelchair into a space FirstBus designed using their imagination but no tape measure, and all without cracking the corns of other mobility-challenged souls in the disabled and elderly seats.  I was plum-red and puffing by the time I could secure the brakes and we could all get on our way. It’s hard not to catch anyone’s eye when you’re the only person looking in the opposite direction towards an audience, and I noted with a skimming glance that at least four or five people were gazing at me (that was an improvement from my original estimate of everyone). Oh lawks. My idea of hell, generally. But then I thought, well, so what? People are looking at me because I look different – and I am different. In wealthy, healthy western countries, it’s not that usual to see someone of barely 50 in a wheelchair. Sickness and frailty are for old age, not the middle years. Not only that, it’s normal human behaviour to look at and assess anything different. People look at other people *all the time*, and for a million reasons. Maybe they were feeling pity for me. Maybe they were wondering what had happened to me to ‘put me in’ a wheelchair. Maybe they were cursing me for slowing their journey down. But actually, maybe they were wondering what they were going to have for dinner, or if the dog would make do with a quick once-round-the-block instead of the park in the rain, or what happened on Eastenders last night. Lesson number one: as in life B.C (Before (medical) Catastrophe), what people are thinking isn’t and shouldn’t be my concern.

While it’s possible to see this as quite an interesting anthropological moment, and maybe it would make a neat dinner table discussion, don’t ever get me started on the state of Glasgow’s pavements. Lesson number two: the state of the nation’s public highways and byways really is as bad as my Mum used to complain about. I am Dr Furious of Nutstown on this one. Lowered kerbstones are supposed to make life easier for a fairly large proportion of the population, including people on wheels, but also parents with little children in large buggies, and elderly people who aren’t as nimble as they once were. Glasgow City Council’s idea of a ‘lowered’ kerb is anything that is five millimetres out of kilter with its neighbour, and even if that dip is at one end only. I have a special extra foot thing on my chariot which makes mounting kerbs marginally more effective and less life threatening should they be insufficiently lowered, and I’ve still been left dangling off a footpath, three wheels on, one critical back wheel off, feeling the backdraft of cars as they whoosh by – seemingly oblivious – on the busy road behind me. It is so dangerous to make the fifteen minute zip to Asda by the quickest on-foot route, that I’ve got to follow a crazy zig zagging meander to find the safest kerbs for me to drop down from. At the end of my own street, the kerb is so badly lowered, I now travel down the parallel street below us and cut up a lane onto my home road, doubling back up to my flat. I add an entire length of a street onto my journey, just so that I know I can keep myself safe. This is especially important, because I’ve been the target for verbal abuse by men in a white van for having the audacity to set wheel on tarmac. It’s a crazy world out there, and I don’t feel as safe any more. It’s only a few weeks into wintertime, and I feel nervous and jumpy travelling about in the dark in my wheelchair too. Some drivers – who I am sure would be very nice if they found themselves sitting beside me for dinner – turn into feral, testosterone spraying grease-monkeys when they turn the ignition on. I am fair game for catching the flak of their workday stress apparently. I feel vulnerable, much more so than ever before. It’s a learning curve, but my instinct to smile and raise a middle digit to my antagonists is curbed, because I know if they wanted to scare and intimidate me more, then they could do so, very easily.

Finally, the big one that many of my friends in wheelchairs have to wrap their heads around: how to handle the reactions of people around you when you stand up. Lesson number three. Yes, yes, I cannot lie – I can actually still stand up. I can even walk for brief spells, though not without discomfort or payback, and with the aid of a walking stick. But I – along with around 80% of fellow wheelchair users – can stand up. It’s one of the most insidious myths about disability, that there are no degrees of impairment. You are paralysed, or you can walk. In the real world, only a small proportion of disabled people have entirely lost the use of their legs. For many, myself included, a wheelchair does two things: it reduces my overall pain load; and it expands the horizons of my world, offering an excellent tool to preserve independence as much as possible. It’s a piece of kit, in the same way as a perching stool, splints for weak muscles, and a walking stick is. It enables the completion of an activity that would otherwise be difficult or even impossible. It’s why the title of this uses inverted commas. My wheelchair is not a symbol of my disability; it’s an emblem of my liberation. I use a wheelchair; I am most definitely not in a wheelchair. I should say, however, that from what I hear and read (and gone through myself), there is a process when someone acquires a disease or condition that changes, often shrinks, their physical possibilities and life choices. It involves fear, longing, sadness and not a small measure of mourning, but also acceptance. I think everyone has a different moment in their process when difficult emotions start to ease up, and acceptance and peace with this new and unexpected direction in life kicks in. For me, the biggest mental leap was getting a mobility scooter. I had started using a walking stick with little thought, but I really chewed over every aspect of what using a scooter meant, how it would feel, what it said about my life, my illness. When it came to the wheelchair, I made an almost emotion-free decision. It was practical, it was sensible, and I was building up a few aspirations for getting out and about. I was frustrated at not being able to do very pedestrian (gettit?!) things, like nip out for a pint of milk. I realised the thing that was holding me back was really two things: my crap legs. Replace with four wheels and taaa-daaaaa, problem solved! Still, until you or someone close to you faces these choices, you don’t think about any of the issues I’ve mentioned here much. You don’t have to. And that’s fine, to a degree. Where it starts to become un-fine is where people allow social (and political) myth-making replace an accuracy much better acquired by asking people who know the truth – the sick and disabled – about their lives and experiences. So I’ve twice encountered evident judgement from other people, both times in a supermarket, and both times because I stood up. Once to reach for a bunch of reduced flowers in a bucket dangling at about lampost height (anything for a bargain); and again after I had put my items through a self service check out, then stood up to put them into my wheelchair back-pack (the other option is to twist my buggered left arm around to try to drop things one by one into it then pull the zip shut without stitching my finger into it – nasty, believe me). The woman behind me tutted so loud that I couldn’t help but look up at her. I didn’t even realise she was directing her ire at me until I saw the crossed arms and mouth set in stone, a glint of dislike in her eye. And I thought, quite frankly – fuck you. Fuck you and your ignorance, and your self righteousness, and your opinion based on bigotry, and your lack of manners and simple humanity. So I stopped what I was doing and I stared right back into her eyes. I stared at her until she was the one turning pink, and she had to look away. Only when she did, I got on with – slowly and carefully – packing my shopping away. I hope she remembers that experience. I’m also a kind enough person to hope she never finds herself in the position of having to deal with people like her, and the way she made me feel that day.

So much of what we know about disability, we glean from second, third, fortieth hand sources. We read about it online and in the newspapers. We cry at sad stories of children born without limbs, brave soldiers blown up with bombs, young mothers cut down by savage and incurable diseases. Yet, for a significant minority, those stories disappear when we see a disabled person behaving in a way that doesn’t fit our personal template of ‘disabled’, whether it’s someone getting out of their chair to pick up a jar on a high shelf, or tanking a bottle of wine in a pub, or even raising two fingers to van drivers. That’s disgusting. That’s what that woman’s face said to me that day. You’re disgusting, having a wheelchair that you obviously don’t need. The irony is that I’m an open and approachable person. If you wonder – ask. Let me explain to you how this life, how this body, works. Because I know it from the perspective of deep understanding and real life experience. The overwhelming majority of people I’ve encountered have been kind and compassionate and keen to help, and I’m glad I’ve encountered so many around my neighbourhood who have met me where I am, not where they think I ought to be. So this is the final insight I’ve gained recently: that woman was disgusted because I’m not doing ‘disabled’ as she wanted me to do it, or felt I should be doing it. And too buggering right – I’m doing it as me. Want to know more? Just ask.

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Greetings from my mattress

I was planning to write a jolly piece about the largely positive experience I’ve had of using my new power chair in the last two weeks. It promises to be quite a game changer, in terms of energy conservation and by increasing my pain free time. However, yesterday was one of those mysterious crash days that I’ve never been quite sure what to make of. I woke after a soggy 13 hours sleep, and spent another hour trying to break the surface, to rise from a soupy subconscious to full-witted state. My duvet felt benignly weighted, pressing down, moulding itself to my form and generating just the right amount of heat to make me feel cocooned and cradled, safe and, unfortunately, tranquil to the point of sedation. With huge effort, I raised the bed head, rearranged pillows to support my cannonball head, and drank some coffee, hoping the caffeine hit would propel me over the threshold to operational perkiness. But after an hour or so, I was still listing gracelessly to one side, unable to concentrate on a screen, and dipping my eyelids to block out the dull light from the window. Uh oh.

Something stirred, and I recalled that light sensitivity, a relatively new symptom, has become a useful herald of incoming physical storms. It tends to provide a percussion background for a symphony of other stuff, rather than playing solo, so it was time to batten down the hatches. I couldn’t put my hands on a sleep mask, so resorted to tying a headscarf dotted with cherries around my eyes. Sense of humour still robustly intact, I thought I must resemble a hilariously distorted character from Fifty Shades, flannel jammies and blindfold, hot water bottle and cats.

The Boy appeared, all concern and have-you-taken-your-drugs. Yes, I’ve been a good girl today. I had been reducing the gradient on the head rest by half an inch every few minutes, trying to find the optimum position where my head could tolerate the sensation of uprightness, before realising only completely flat out would do it. I abandoned myself to the pillows and reached for the audiobook button.

I don’t find resting too difficult any more. I’m at peace with my body, mostly, and I like to take care of it. Resting feels proactive to me now, rather than the surrender it used to represent, as if by making my body do things that caused it pain and discomfort somehow made me a better, stronger, proper person. It’s one thing to be sick, but the greatest social sin is to ‘give in’ to it. It doesn’t take long before you realise that ther are no medals for suffering. Nobody is awarding you any brownie points for making things worse for yourself. Nobody thinks you’re any more impressive for bursting yourself so badly you need to lie in bed for a week. Nobody will be congratulating you for self-harming. That Friend – almost always talking from a place of ignorance having never lived with chronic ill health – who advises ‘not let it rule your life/get the better of you/win’ can get to France, as far as I’m concerned: they won’t be there to mop my tears afterwards, lying broken in bed at night. Having mulled this one over for many a year, I think those who advocate explicit martyrdom do so from a place of fear; if I, their strong, gutsy friend can be so reduced by pain, what if they get sick too? How awful must that pain be? If you’re still there, visible, getting on, pushing through, it can’t be that bad. It’s do-able, cope-able, and as much about their own terrors, not my experience, or even my best intersts. Still, however much I love you, off you pop across the Channel if that’s the advice you’re going to offer me.

Anyway, I digress. So, lying snug in the dark with an audiobook it is, not the worst way to pass a Sunday. Then blackness overwhelmed, and before I’d grasped the first line of a new chapter, I was out cold. Or warm, I should say. I came to three hours later, befuddled and bemused, not sure what had hit me. Then I crashed out again. And again. I finally managed to maintain a dopey consciousness for about an hour late on Sunday evening, but I lacked the strength to hold my knitting, or the concentration to watch TV. I just wanted to keep lying still, listening. I was back asleep by 11pm, and slept until 9am this morning, only disturbed by my phone ringing.

Unusually, I’m still feeling delicate today. I am managing to sit partially propped up, though only at about half the normal angle, and I could probably do with a straw to drink with as I’m in danger of drenching my neck every time I take a sip. I can’t open the blinds, but my lamp is on, the quality of its light being softer, less like tennis balls bouncing on my corneas. And obviously my tolerance for screens is much better today, as I’m managing to write this, albeit with the brightness setting down as low as it can go. I feel as if I could easily close my eyes and drift off whenever I fancy (I’ve found my proper sleep mask, which assures the blackest of unsightedness), but also just strong enough to resist that instinct. I don’t feel I need any more sleep, but I definitely need more rest.

The cause? A useful discussion with my neurologist last week gave me a better grasp of the unpredictability of my physical condition. When the central nervous system is damaged, he said, it becomes chaotic. A healthy CNS operates according to defined rules, and is a thing of wonder to behold, constantly receiving, decoding and responding to incoming information about the environment from all our senses, all at once, on a constant loop. Mine tends to cope with one thing and one thing only at a time now, and when it becomes overloaded, or stressed, or just has to work a little bit harder, it fires off confused messages to my skin (buuuuuurning), my ears (the tinnitus buzz that turns to jangling), my muscles (release the lactic acid…..wait she’s trying to walk – cramp! cramp!), and my general system (something is happening and we don’t know what to do, so we’ll power down all energy supplies). Yes, I do imagine my head full of Numskulls from the Beano. Everything and nothing causes this fatigue.

And so in the absence of physical stability, I can only persist with attentiveness, gentleness, and compassion towards my body day by day, a commitment to do what I can when I can, and with self fulfillment as an ultimate goal. It can’t be a bad life if lived in such honesty, can it?

Next time: wobbly woman gets mobile – the adventures of a baby wheelchair driver….

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The algorithm of wellness

How are you today? No, really, kick back on your heels and think about that question for a moment or two. Chip it down, drop it in the hot fat of your brain, and see what you cook up. How…am….I………today? Nobody really does that, right? It’s a throwaway phrase, it just a means to open discussion, it’s a greeting, a friendly way to indicate you’d like to communicate with someone.  It works just as well when bumping into a friend in the street, or sending off a text or email – hey, how are you, how are you doing, how’s tricks, how are things going? Select your favourite, or any other variation on the theme. It’s social shorthand, a polite but largely rhetorical enquiry, a signpost pointing to an incoming glob of juicy gossip or passing on personal news. The destination is the point, not the sign that precedes it.

It’s a nice thing to do, to show interest in someone’s existence and journey through the world, though I don’t think many of us see it as that when we use it – we’re just ice breaking to get to the meat of the message. I never thought twice about it until I became chronically ill. When I did, it took on much deeper significance all of a sudden, and those asking it meant it – they wanted to know how I was feeling, how I was coping. Hmm, gosh, now you mention it, how am I today?  That’s a tricky one.

There is a real temptation – and I think this is true of most folk who get sick suddenly and without warning – to ponder my health every day. It’s a natural reaction, particularly in complex illnesses which are multi-systemic. Every day feels like a whole new spin of the fruit machine, with ten thousand possible permutations except you never hit the jackpot. You’re on edge, desperate to experience a miracle and complete recovery as quickly as you got sick, so you monitor every symptom. In chronic illness, there are usually core issues – my three are fatigue, pain, and weakness – but then comes a bountiful cornucopia of possible additional problems, like bladder or bowel issues, digestive and eating problems, hearing problems, dizziness, difficulty regulating temperature, fainting, muscle spasms, sore throat, swollen lymph nodes, light and noise sensitivity… Sometimes these move in and decide to make a home with you, other times they might just be mini-breaking, enjoying the hospitality while their host’s bouncers (ie, the immune system) decides how to boot them out.  Whatever the length of stay, they often fade in and fade back out. We (the spoonie we) must keep a track of these in order to present to our specialists, as some might indicate a deterioration, or a new condition (people with autoimmune issues frequently end up with multiple diagnoses). Or they might mean nothing at all.

So that’s problem number one when I’m trying to answer that question. There are usually quite a lot of bits of me to check out to before I can begin to work out how I am. Problem number two is that these symptoms are the polar opposite of predictable: unstable, unreliable, unruly, and chaotic. It’s like living with an internal toddler in a permanent strop, without the compensatory cuddles. Things skew and swing, not just from day to day, but hour to hour, even a couple of minutes can make all the difference. Sometimes a symptom can disappear for months, then pop up again. I’m currently squinting suspiciously at what I suspect is the toxic incubated spawn of vicious virus that gave me a month of vertigo a couple of years ago. I can stand up this time, but the ear hiss, dizziness, tingling and intermittent nausea are all present and correct. So I’m never quite sure at which point to say ‘great, I do not suffer from symptom x, y or z any more’. This illness abides by no rulebook but its own. It has made a bonfire of my mind-mapped life plans and replaced it with its own secret, malicious agenda.

The third and final problem is that of personality type, about which I can do little. I like to answer people honestly. I appreciate folk checking in, and I feel I owe them a straight answer. This, however, is not always an easy thing to do. I don’t want my children hung up on how I’m feeling at a stage in their lives that they should be off romping through metaphorical fields of poppies, travelling their own paths with no regard for their mum. I don’t want my friends to become bored, loosening our ties, because each day starts with a list of ailments. But by the same token, if I just say ‘I’m fine’ then I have to explain why I can’t get out of bed that day to go for lunch, or, even worse, plant false hope that I’m recovering when that’s far from the truth. At the same time, I am so sick and tired (ha!) of feeling that my life’s key defining feature is a measure of how sick and tired I am day by day by day.

So it’s time to shift the focus, I think. Away from a medical conceptualisation of ‘how I am’ toward a more holistic, more Buddhist way of viewing my self. Some aspects of the NHS have, inch by creaking inch, been moving towards this rounder view of health, and I reckon this will become more explicit as the numbers of us chronic sickies rise with expanding life expectancies. Instead of wishin’, hopin’, dreamin’ of being ‘healthy’ again, I’m going to focus on being well right at this moment. Wellness is, I’ve decided, a much better measure of how things actually are. It includes how my head feels, whether I managed to complete a task I’d wanted to get out the way, and if the flowers are blooming outside my window. Did I get some writing done, have I spoken to a friend on the phone, did I have a lovely shower with delicious smelling washes, and did I get out into the fresh air – even if that was the back step?  Have I read an interesting paragraph about anything, how’s the knitting coming along, and how was my meditation today? Do I have hopes and ambitions? Is there something to look forward to? If I look at my everyday life and the activities I do, how my emotions churn and change and how I respond to them, I reckon I can honestly describe myself as well. The natural outcome that follows, something which I believe flows from sustaining that wellness, is happiness.  The many tiny acts that create and sustain wellness make me happy.  Risking arrest by the cliche police here, but it’s really not about the destination at all, but rather the style of your strut down the road.

So, it’s time to cease dwelling on individual symptoms (insofar as I can; obviously if something bloody hurts, I’ll tackle it with heat, cold, massage, meditation and – frankly – many drugs to make it stop). Still, my journal will no longer document the disarray caused by minor skirmishes and major battles that rage daily across my internal landscape.  I’ve stopped assigning a numerical value to the pain, fatigue, weakness, whatever now. I did that for over a year, trying to make any connections, looking for some kind of pattern, so that I could apply a framework of understanding to it. I failed. There is no rhyme or reason. Sometimes there’s an explanation (my left arm protests if I carry anything heavier than a loaf of bread; the longer I walk around, the worse my head zaps and discombobulation becomes), and those are relatively easy to remedy (or risk and pay the price). But a nil result is still a result: I understand my limitations a great deal more now than I ever did before. More importantly, I am accepting them. I realise that life is forever changed, that full recovery is almost certainly impossible, that my body will probably always, to a greater or lesser extent, malfunction, and that I am and can be happy living with, not just despite of, my illness.

Do, please, keep checking in with your chronically ill friends and family. It’s always wonderful to feel the day has been shared, especially to those of us who are mostly housebound. However, if you ask how I am, and I respond ‘I am well’, you can rest assured that I am, as I am, happy in my moment, disregarding what my body is getting up to. And if you really want an accurate description of how I am physically today – ask me tomorrow.

 

 

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Packing our respective trunks

 

We met in Waterstones’ cafe, and I didn’t feel nervous going to meet her, we had spoken on the phone and her down-to-earth kindness was evident in her voice, her demeanour, as well as her words. She had mentioned some of the therapies she offered on the phone, and I looked on her website too, noting my response to them: I immediately start to evaluate things depending on whether ‘I can/can’t do that with my arm’.

Despite pain not being my (self defined) worst symptom, I’m not terribly keen on the type I inflict on myself by using my arm inappropriately.  In this context, that might mean carrying anything heavier than a loaf of bread, moving it quickly upwards or outwards, keeping it in an awkward position for too long, or, indeed, typing too much. I’m not afraid of the pain, I have a high threshold and tolerance level. It’s the pointlessness of it I think I resent; the pain of a broken bone or pulled muscle means damage and subsequently repair, whereas my pain is just meaningless. There is no damage, and this is good, but consequently neither is there hope of repair. It’s pain for nothing, I think I fear that. Moreover, pain is only one aspect of a flare. The whole upper left flank of my body is affected in different ways, from the underside of my jawbone down to my fingertips. There is numbness, tingling, little electric sparks, an insistent tug as if I have a length of too-tight elastic running from the side of my head down the arm. My body wants to curl into it, and sometimes, on my bed days, I do, but always for carefully measured stretches of time so that I don’t sit too long – I fear muscles wasting, drying out, setting, turning the left side of my body into a deadhead, never to bloom again. Numbness runs down the side of my neck, which it makes breathing odd – not difficult, just odd, because I can’t feel the flesh yet I’m aware of something moving up and down, side to side as the breath comes and goes. It spreads across my breast- and collarbone, and it’s this sensation that often makes me nauseous.

When I meet her, I explain all this, along with the swiftness of muscle fatiguing and spasms, the dizziness, the generalised ‘malaise’, a word that lots of chronically ill people don’t like, but I do. It suggests to me a gentle drifting, a state of mild confusion, a struggle to understand the world as a whole as the days coast by, a vacant gazing at what was once familiar, scrabbling for meaning. That’s me, now.  We exchange personal stories for an hour or so, she tells me her journey through and with the illness so far. I describe mine. The past is dealt with quite rapidly, and soon we’re talking about the now, how to deal with this thing right now.  She tells me there comes a point where the illness slots into place, it becomes a given, something you live with – NOT despite of. It’s this switch from active resistance to acceptance that is the key. I don’t think you can make that happen, I suspect, as with all forms of grief, it is a matter of permitting time and your mind to work their magic. I also recall many, many meditation sessions on very rough symptomatic days which not only ended, but increasingly also began from a place of calm and clarity.

We talk about the danger of the social tendency to applaud ‘the fight’ against all sorts of diseases, that acceptance is often seen as being weak because you’ve given in. You’ve let it win. But that’s not how she sees it, there is no battle, there is no war. There’s no victory or defeat here, just facts. It’s as if, she says, you’ve been assigned your own personal elephant. But you speak to the elephant, never make eye contact, never even acknowledge him there. You traipse through every room in your house, never glancing at the dirty great elephant that follows you around and plonks itself on the sofa, slinging its trunk over its shoulder as it sips a latte and sighs. You talk around it. I think you can talk around it, even while talking about it. You think you’re talking directly, honestly, but actually you’re just ignoring the reality, you don’t really believe it’s happening. The moment the mind says to the elephant “oh, you’re here”, that moment is absolutely critical. That’s when healing – which I think is different from recovery – can begin.

We go on to talk about the specifics of therapy. The one recommendation she can’t praise highly enough is yoga. Yoga is a must. She’s not keen on mindfulness out of personal preference, but yoga is the body in meditation anyway. I agree to explore the possibility of a class. It makes sense to me, here, now, that I need to focus some energy on finding workable yoga. She talks about massage. I am very squeamish about touch, even from friends, and sometimes lovers, but she can do massage that bypasses the trunk of the body and I think I can manage that. However, she made a critical point, which I hadn’t really thought of before, which is that she would not massage, for example, my whole arm in a session. She will proceed with great caution, perhaps working on my hand one day, my lower arm another. You must be conscious, she says, that every time you massage, you’re manipulating, churning the system beneath the skin; the straggles and mass of flesh, muscle, humors, and, most importantly for us, nerves. She will need to be very careful to introduce this gently, tenderly, to avoid triggering a reaction from the nervous system. Don’t poke an elephant. It’ll flatten you with one almighty kick.

There is talk of practical, organisational tips that help her/may help me function in day to day life. She shows me her rucksack, a bag which took a fair bit of time to find, as she sought one that met all her requirements. It is immaculately organised inside, notepads, a pencil case, along with the Stuff Most Women Carry – tissues, purse, lotions and so on. This, she advised, was really fundamental. Everything in the bag has a purpose, and everything in the bag enabled her to live her life comfortably and without fear of forgetting things, confident that she won’t be compromised while out and about. I need a new bag. Another new bag. I feel less guilty about buying yet another, as I’m obviously going to take a while to find the one that fits my unique needs. I’ve seen one already online….

Included is an A5 sized ring binder and this is her personal Bible. She took a long time experimenting with different styles of pad. Everything she needs to write down, everything, goes into this binder. There is plain paper, lined paper, paper marked with grids, and as she flicks I notice a rainbow of inking. I tell her I have been trying to whittle my pads down to just three or four, for discrete purposes – no, she argues, use one with sections. She’s right, of course she is. All this time, I have struggled and struggled to keep track of things – I end up with a heap of loose papers, notes scribbled on receipts, a journal, a writing notepad for out and about, a writing notepad for inside, a notepad for writing down what I have to do, day to day. One notepad, with four sections – preferably similar to hers, a ring binder so that it can be added to, or pages taken out – suddenly makes blindingly obvious sense. I think I will still use my bullet journal separately as I’ve been maintaining it since the start of the year, and it’s more personal. I may change my mind, but for now I can aim to cut my use of notepads down to a very manageable two.

Finally, we talk of what happens next. Of all the therapies, reiki is the one we are going to work with first of all. She is qualified to train me to Level 1. She wants me to go and read a little around the subject, and when I’m ready, we’ll meet again. However, we will meet, she states, as friends. For the time being at least, she will not take money for treating and teaching me. This is, she says, a way of paying it forward, in gratitude for the radical changes the therapies have wrought in her own mind and life. Whatever works for me – some might, some might not, perhaps all will, or none at all – will help me decide the next step in my route. I find my eyes swimming with tears – why do I cry when people are kind to me?!

If she hadn’t gone along to the breath works event – and she nearly didn’t, her husband dragged her along – she wouldn’t have met my friend J, and then, via his mediation, me. The universe has aligned, I guess. I have a feeling that, despite this year being physically very challenging, it’s also been a year of moving forward, at my own pace, and largely through the use of meditation. I’m ready now to start to build a simple structure, insofar as I can establish one given the active fluctuations in my physical state day to day, a frame within which to function. As I start to back away from pharmaceutical interventions, I might learn some techniques that I can take into the home with me. That they are drawing from the traditions of yoga, reiki, massage, a holistic synthesis of mind/body approaches, that’s all to the good. I need to be able to take care of my body within the confines of my bed and my head, as much as (possibly more so, in reality) I need to be able to function outside the house.

The fight is over, and it is neither victory or loss because it never was a fight. An elephant has come to live with me, and I might as well make pals with him, he’s not going away. He’s not in charge though, any more than I am. We are travelling companions, but I decide where to go next. I just have to take him along with me, and that means accommodating his needs compassionately.  The kinder I am towards him, the better my life will be. I am beginning to redraw the contours of my life with an elephant. Now there’s a sentence I never thought I would write.

 

 

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Self sabotage

There is too much light in the air today. My eyelids won’t retreat; they’re the heavy squad, my protection. Breathing takes will. Push the invisible hand up, feel it press back down. Repeat. And repeat. Repeat again. This day is too heavy for me, for my chest, my arms, my legs. I can only lie down beneath its weight. Unseen creatures gnaw on my collarbones, claws grip muscles, paws scuttle beneath my skin – nerve endings return fire. My feet go awol, then return with a burn. Television assaults me, combined sound and vision scratches at my senses, my brain scrambles to keep up. In silence I turn into the pillow’s sweet, soft embrace.

Dear body, you’ve got it so wrong.

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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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