Language and Metaphors

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Consider the following alternatives:

1. I suffer from symptoms of asthma
2. I have asthma
3. I am an asthmatic

Can you see the difference? Does the language with which we describe our illnesses matter? I think it does. Our lives are a story that keeps unfolding. A large part of that story is determined by what we tell ourselves, and others, about ourselves. Whether you feel you suffer symptoms, own an illness or identify closely with it is a personal choice or, perhaps, simply intuitive but it shapes who you are and informs your behaviour and other choices.

As it happens, I do suffer from asthma symptoms (since early childhood) and I’ve noticed that as my condition becomes more easily managed owing to medical advances in treatment , my attachment to it as a facet of my identity has loosened. So you’ll notice my choice of language now where 30 years ago I would have been labelled-and labelled myself-an asthmatic.

I wonder, however, if that choice is as free or intuitive where ME is concerned. Consider the following alternatives:

1. I suffer symptoms associated with ME
2. I have ME
3. I am an ME sufferer

If asked by a stranger, how many of us would opt for the first alternative? If not, why not? One reason might be because not only have there been few medical advances in treatment there is as yet a complete dearth of understanding about what the condition actually is. Accordingly, very, very ill people are forced to raise awareness and plead for sympathy, understanding and support. Shamefully, this often needs to be directed at health professionals. Thus there is a sense of taking on responsibility for promoting just what’s involved: the sheer relentless, devastating, debilitating awfulness and that means identifying very closely with what’s going on in our bodies.

Ideally, I would aim for option 1 as it gives me the hope that at some point I will no longer suffer these symptoms. They will go as they came or will be capable of easy management. I certainly don’t want to own ME and as for it being my identity …..[insert suitable expletive!]

I’ve noticed in a few articles recently fantastic examples of people using language, specifically metaphors, to describe their experience with ME. Paul Tomkins describes it as half a man, one half stolen. You can read more about this here and Marie Curran describes it as her invisible friend here. Both articles are beautifully written and thought-provoking and I’m grateful to Paul and Marie for sharing their insight.

For my part I have long envisaged ME as an uninvited, abusive monster that lives within me and with whom I am forced to co-habit according to his draconian rules. ( Sorry guys, but I very much see ME as male!) More specifically, my ME monster looks like the giant in Jack and the Beanstalk; he’s huge, powerful and I have to tip-toe round about him so as not to wake him up and rouse his ire. He’s also very fickle. One day I might happily potter around with him only grunting in his sleep but on other days the same level of activity will unleash a ferocious backlash.

I’ve found the only way to handle him with any degree of success is to bore him into submission, largely by a process of aggressive resting, as I saw it described recently, living within my capabilities and taking few risks. Not much of a way to live (understatement) but accepting this does bring a measure of ease.

By using such metaphors we are able to try to make sense of our situation, to communicate with ourselves, with other sufferers, and with the wider world with the ultimate aim of getting ME firmly on the scientific research map to deliver treatments so that we (being optimistic) and those who come after us may have a chance at really living.

Over to you, what story do you have to tell?

Gratitude

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Red Arrows over Paradise

I’ve just weathered a perfect storm of circumstances that culminated in the most serious relapse I’ve endured since developing this illness 8 years ago. In common with many people, I feel drawn to writing about how awful it was: describing the sensations, feelings and thoughts, worries and fears in the hope that by so doing it will add to a collective body of first-hand evidence that will spur the scientific and medical worlds into action. But I’ve decided not to. I suspect my prose is liable to fall into cliche lessening the impact on any casual reader.

Instead, let me express my gratitude towards the people who were with me when this relapse was raging and threatening to overwhelm me. My sister who sat with me, distressed. My new GP who offered compassion. Twitter buddies who offered many kind thoughts and prayers. Old friends who phoned, texted or visited or whose visits I needed to postpone. My children who have become reluctant housekeepers. My priest who offered solace. And many more.

Let me also pay homage to the small marvels of our world from which variously I found succour. To the clouds I watched bloom and chase across the sky. To the hills, steadfast in their assurance. To food and drink. To formulaic tv programmes. To books in small doses. To social media, my other window on the world.To meditation and relaxation audios. To having a loo that is only 7 steps away!

Mostly, I’m grateful that the worst has passed. I am in respectful awe of those for whom such respite never comes.

Three Days In The Life

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May 12th marks Florence Nightingale’s birthday. It is suspected that she suffered from an illness akin to mine and thus is the day chosen to raise awareness of this most mysterious, relentless and life crushing condition: Myalgic Encephalomyelitis, sometimes known as Chronic Fatigue Syndrome or Post Viral Fatigue Syndrome. My contribution is an intensely personal one: to share the following three entries from my journal with a view to affording non-sufferers a glimpse of what life is like. The context in which these entries are set is the struggle to get from day to day and, in particular, to fulfill my family and work commitments while feeling my strength ebb away and symptoms proliferate.

Tuesday 26th February 2013

‘Oh dear. It is not good just now, not good at all. Over the weekend I had hellish, excruciatingly painful bouts of diarrhoea. Still soft this morning. Symptoms are running very high. Hyperventilation and head swimming, exhausted and uncomfortable, aching. Didn’t sleep well last night and am now in bed at 6.30pm. Meditation during the day is almost like the desperate act of someone drowning. So busy at work but achieving so much less because I’m so debilitated. Just now, head is swirling and neck, shoulders and back ache terribly. No assistants in tomorrow–yippee! Just keep going!

Monday 18th March 2013

‘There are only so many synonyms to describe how truly awful this is. I think on top of all else I’m developing a bout of sinusitis. Head so sore today, vision dissociated, tic in left eye. Did virtually no work. Aching, exhausted and now starting to feel low, bitter and sad. This spell has dragged on since January. I’d challenge anyone to withstand this. I haven’t had a single day recently that hasn’t had either grinding misery or acute scary spells. Over the weekend I did precisely nothing other than read, watch Ashes to Ashes or pick mum up. Yet I still feel so ill. So very, very fed up of this. No escape route anywhere. Life loses its joy, colour, texture and I turn into a blob. It is so difficult to perceive managing again, to feeling capable, jolly, accepting. In truth, being ill every single day really is taxing me to the very limit. Quiet frustration indeed. I have no vitality, I find it impossible to go with the flow; I’m ill, fatigued, helpless and hopeless. Yet tomorrow I must get up and do it again. Perhaps the best way is to be unthinking–the opposite of mindful–because being mindful of how I feel is simply amplifying it. Also, my craving for junk food is back with a vengeance. The crappier I feel, the more I want to eat crap food—ach, this too will pass, this too will pass….’

Friday 7th June 2013

‘It would be an understatement to say that the last few days have been difficult. On Tuesday I had no flu symptoms and managed the whole day at work by pushing it. On Wednesday, just felt really unwell, masses of symptoms so much so I said to my boss at lunchtime that I had to go home. Was wired and tired, couldn’t rest and got very little sleep. Stayed in bed and worked there on Thursday morning then went into work at 12.40. My sister drove me to the train station and I got a taxi from Haymarket to work to conserve energy. Had meetings before my committee meeting. Went to the committee room where it was incredibly warm which I think was the last straw. Within a relatively short time I felt very uncomfortable: hot, heart racing, palpitations, aching chest wishing that the meeting would be over quickly so I could escape. After a few minutes it became unbearable; thought I was going to pass out so I made my excuses and left. I ran cold water on my wrists and lay down. I had a full blown acute episode which refused to subside. Every time I sat up, the world swayed. I’d permanent burping, rigors and feelings of alarm. After a couple of hours an ambulance was called and we went to Edinburgh Royal. Got lots of sympathy for having ME but not one person knew what to do. In fact, the A&E doc asked me! Advised her–rest only. ECG was fine, BP 166/90, HR high, temp 38.5. Classic signs of my nervous system cracking up. This episode was so long–must have been from just after 3 until after 5 before it subsided, maybe even later. It was absolutely, deeply, horribly unpleasant and scared my work colleagues too. And then the saddest thing of all today. I missed Eilidh’s graduation. I got up and got dressed but that effort sent my heart rate soaring. I couldn’t risk having another episode at her school so packed Eilidh off, alone, in a taxi. Wept about it. For the next few days I won’t be far from bed–clear I need lots of rest.’

I haven’t been far from bed since. I didn’t make it back to my work. The struggle continues.

For more information, stories and poems: May12thBlogBomb

Nasty Surprise

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The quaint aspect of this illness is that no sooner do you think you’ve experienced it all when along comes another nasty to surprise me. I had an episode this week which has set me thinking about how my body behaves and what I can do to persuade it to become what I’d like it to be: flexible, adaptive, coherent, energised and stable as described by Dr Daniel Siegel.

What happened was I was sitting perfectly calmly waiting for dinner to cook. My vision became fogged, followed by a huge sense of pressure in my head. When I stood up to attend to dinner I became very dizzy. Acting on instinct, I lay down with my feet elevated. During this episode I was aware of huge pressure in my head, pains in my chest and spasms in my gut. What was highly unusual though was that my heart rate dipped dramatically rather than rise. It took probably a couple of hours to right itself after which I felt utterly exhausted.

I’m very fortunate in having a wonderful doctor to turn to who said that it sounded like a parasympathetic nervous system reaction and referred me to the Polyvagal theory about which you can read here. I had a look at this and didn’t really understand it until I read an article comprising an interview with Stephen Porges who is the author of this theory. My layperson understanding of this is that our nervous systems react using increasingly older parts of our brain depending on the level of threat perceived. It appears I may have had a ‘freeze’ response because my body felt itself under serious attack.

So I pondered on the circumstances leading to this event and recalled that I’d had little to eat after breakfast and, just before dinner, I’d drunk a gorgeous freshly squeezed glass of mango, orange juice and soda water. Could this have been responsible? I found a further article about the effect of glucose on the nervous system and the sensitivity of neurons placed around the body. Wow! Organs of my body sent a message to my brain that a sudden influx of glucose meant it was under threat. My brain responded in a dramatic and unpleasant way causing me to lie flat until my body felt that it was safe.

This led me to think further. If my intestines perceive sugar as a threat, then why not loud noises by my ears, alcohol by my liver, exercise by my muscles or indeed any form of sensory input. It also seems likely to me that if the organs of my body are sending repeated messages that I’m not safe then the receptor of these messages in my brain will become sensitised, anticipating threats and reacting in what it perceives is a proportionate way. Of course, it’s not and sets up increasingly destructive feedback loops. And sensory input doesn’t come singly, we perceive lots of stuff at the same time. Can you imagine the maelstrom of activity that would be created if I walked down the street in roasting hot sunshine, listening to punk rock, drinking from a can of Irn Bru (loads of caffeine and sugar), thinking about an upcoming presentation then my phone goes off!

Even lying watching telly involves sight, sound, thought and emotions. All magnified in a brain that is super-sensitive and malfunctioning. How utterly exhausting! And what other damage does it cause, for example, to the mitochondria within my cells trying to create energy to keep the whole draining show on the road.

But it doesn’t stop there because I don’t get any peace when I’m asleep. My guess is that my brain interprets dreams as threats and that the loops of over-reactivity continue. Most days I wake up face scrunched up, jaws clenched, shoulders round my ears with pins and needles in my hands, aching, sore and fit for hee haw. Only to present my body with yet more stimuli to contend with when awake. Sound familiar to anyone?

What conclusions can I draw from these thoughts? Firstly, although I have no proof as to how the malfunction developed, I have to accept that it exists, that it limits my capabilities in the sense that, in order to keep the reactions bearable, I have to limit activity severely. Secondly, that I have no immediate control over the messages that my body, my organs, my senses, indeed each and every cell send to my brain, nor do I have any control over the magnified response. It is a complex set of malfunctioning loops that I could never second-guess.

This all sounds pretty hopeless. But hold on, I developed this malfunction so surely I can fix it? Can I? Is that realistic? If so, how?

My thought is perhaps simplistic in a hugely complex scenario but it is this. I need to give my entire body: brain, mind, nervous system, muscles, organs and cells a break, total rest, and the perception of safety to allow it to return to normality, to homeostasis, to both perceive stimuli and react to it proportionately, in balance and healthily. To break the exhausting feedback loops. I believe the way to do this is to consciously relax my body and mind as far as I can take it each day by focused relaxation practice. Also, to be very wary of stressors: avoid sugar, eat healthily, move gently and don’t watch scary movies (or football matches where the result matters–I’ve been carted out of a game in an ambulance before but that’s another story)!

I’ll be candid. This isn’t easy at all. Life gets in the way. I can’t begin to tell you the reaction I had when a police van pulled up outside my house yesterday when all three children were out. Even without such upsets, when your whole being is exhausted to the point of complete depletion and fragility, it is difficult to find the resources to relax consciously. That is the supreme irony. You might be lying down in a peaceful environment (if you are fortunate enough) but don’t possess the energy to bypass the unconscious, destructive patterns your body is stuck in.

When you do manage to relax, you have to keep going with the practices and, frankly, it can be desperately boring and unrewarding. However, I am committed to these practices. I have used them before and my health has improved. This will happen again. Only this time, I aim to recover fully.

(ps the police didn’t visit me and my children all came home perfectly safe, thanks be.)

Doctor, doctor, can’t you see I’m …….

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Burning, burning? Alright I might be taking a wee bit of licence here, but not too much, as my original working diagnosis was pyrexia of unknown origin. When I had an acute episode (described in my post Let me paint you a picture ), my temperature spiked. It was this phenomenon, this piece of unusual objective clinical data, among others, that caused my consultant to describe me as ‘a medical puzzle’.

When stricken with an unusual and frightening condition, what is it that a patient wants? Answers and reassurance in my case. The former emerged slowly through a mist of experts and tests, until all the major causes were excluded. The latter I’m not too sure is possible to give me categorically as no-one knows for sure what my prognosis will be.

What I have experienced however is amazing care, dedication and compassion from the key doctors under whose care I’ve been placed and I’d like to take a moment to express my gratitude to them publicly. What they all have in common is that they listened to me and used every ounce of their skill and knowledge to help me. They are a credit to their profession.

Let’s start with my GP, Dr Stephen Brown, who warned me about soldiering on through infections. Wise counsel I ought to have heeded. He’s been good enough not to say ‘I told you so’. He supports me as best he can and has never turned me away when I’ve requested a referral or treatment. He also kindly provides all the paperwork, reports and certificates I’ve needed over the years.

Thank you Dr Stephen Brown.

The next key physician in my care was my consultant cardiologist, Dr Allister Hargreaves, to whom I was referred in September 2006. His dedication, care and sheer persistence in seeking a cause for my illness are peerless. He was often the first person I saw in the hospital ward in the morning and last at night. I cannot count the number of tests, re-tests, and other experts he organised during the two years I was under his care. He spent hours listening to me, discussing every possible angle, theory and concern, all with huge patience and a wonderful human touch. He left no stone unturned and gave me the best piece of advice: work within my body’s capabilities.

Thank you Dr Allister Hargreaves.

The final person in this very special triumvirate is my current consultant in holistic and integrative medicine, Dr Bob Leckridge. If Dr Hargreaves gave me the advice to work within my body’s capabilities, Dr Leckridge has shown me how to do this. The first thing he did was to raise my awareness of what constitutes health and thence how to improve, stabilise and enjoy my health. Unfailingly kind, gentle and compassionate, Dr Leckridge has listened to me at long, long length, counselled, advised, provoked thought, and referred me to many, many resources. He is a healer! After meeting with him, or even speaking on the phone, my health is better. No, I can’t explain it but it happens and has been noticed by other folk. He has a wonderful, infectious (in a nice way!) outlook on life and I urge you to visit his blog at heroesnotzombies where you will find so much that will gladden your heart. He is truly an inspiration.

Thank you Dr Bob Leckridge.