Rusty Bullets

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There is no silver bullet cure for ME. Indeed, there is no silver bullet for managing the condition. Some folk recover, fully or partially; some endure ups and downs but never really get better; and some, sadly, get progressively worse. Why that should be remains a medical mystery.

I’ve read countless stories of recovery. As I’ve mentioned previously, I don’t always find these inspirational although I’m delighted for the people concerned that they have found a path to wellness. Meanwhile, I continue on my own path looking for any old rusty bullets that might do the job of supporting my body in its healing work.

Last week I had my first session of Craniosacral Therapy. This involved a fairly gentle massage of the spine and head. Immediately afterwards I felt delicious, normal tiredness. I also had a flash of insight: after all I’d suffered and endured, researched, studied and learned I was still failing in the basics of looking after myself.

I realised that I remain in striving mode, pushing for improvement, measuring, reviewing and finding myself wanting. I feed my cravings for activity and force my development. Invariably, I give more than I’ve got, pushing at or beyond my limits, often in an air of quiet desperation.

That led me to thinking about the recovery stories. What is it that each have in common? After all, they seem to be so different in narratives, symptoms and variety of drugs, supplements, treatments and lifestyle changes. I think it is this: to stand a chance of recovery you must be disciplined about being kind and gentle with your body, mind and soul.

I liken it to bringing up a baby. Who would feed a baby liquidised burger and chips, allow it to be over-stimulated by flashing images or ask it to walk and talk before it was able? Then scold it for failing to thrive?

Does this sound like the ultimate paradox? To recover, we need to stop striving to achieve it. Instead, be disciplined enough to take proper care of ourselves. For my part, I thought I had been doing just this and the reality came as a bit of a surprise.

So, I’ve paused and am contemplating the way forward. With self-discipline and gentleness.

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?

Relationships and ME

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Relationships are a fundamental part of the human condition. Indeed, it is impossible to be healthy and grow as a person without positive interaction with others. Just think of the importance of nurturing relationships with infants. By and large, they are a two way street; each with its unique characteristics. I’ve had cause recently to dwell upon the importance of relationships in promoting recovery.

I had a visit from a friend I hadn’t seen for over 20 years. It was a surprise. The visit was lovely, full of intelligent, interesting conversation. A prize beyond rubies. I felt buoyed and looking forward to the next occasion. It hasn’t happened. I have realised that, with notable exceptions, this is a familiar story. I am left with a sense that I am less of a person than I had been pre-illness. An object of pity, an afterthought, a duty, a good intention never fulfilled.

So, a message to anyone who might be thinking along these lines. I’m the same person I ever was. I just need to behave in a fashion to which you are unaccustomed. I am acutely aware that your relationship with me needs to be much more of a one-way street as my limitations are severe. I would much rather that it was not. I also know that you are exceptionally busy and I have no wish to be the cause of any sorrow for you or rejection for me. That is why I don’t initiate contact.

Without successful relationships though, it is so much harder to recover. ME is a hard mistress: unconditional support, encouragement and love help, they really do. I am hugely grateful for those who offer this, many of whom are in the same boat as me and expend exceptional amounts of their available resources to do so.

If you’re reading this and you know someone with a dreadful illness, pick up the phone, send a text or email or letter. Let them know that they matter; that they haven’t been forgotten about and that you are interested in them, regardless of their debilities. You will do more good that you can ever possibly know.

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