GAME FACE

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I wrote the following on a Facebook Group for people with ME/CFS:

 

May I share one of my pet angsts?

Folk who don’t turn up on time! Today it’s my solicitor.
I prepare myself carefully for the appointed hour. You all know what that involves. As the minutes tick away afterwards, I can neither rest nor do anything else besides behave like a meerkat sentry.
Now 28 minutes and counting…..

 

I received a lot of supportive, empathetic replies from folk who understood my predicament, the finite nature of my resources and the knock-on effect for my health. There were a couple of unexpected replies that took me aback a bit and got me thinking. One chap said: ‘ you’ve a Type A personality, google it’ and another lady kindly outlined her strategies for filling in the time when other people are late: reading, knitting and so on.

So, if this lady can calmly adopt distraction strategies, why can’t I? Is it a product of my personality? Can I make any changes to benefit me?

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Normal working day

It then struck me that, for the majority of my adult life, being prepared and alert has served me very well. I’m accustomed to getting in the zone, putting on my game face and gearing myself up to respond to all possibilities. Quite literally putting on the war paint as it was a standing joke in the office that ‘Mary must have a tricky meeting today, she’s wearing red lipstick!’

Similarly, at home, with sole responsibility for 3 children, being alert and responsible at all times was entirely appropriate and useful.

And there is nothing wrong with this whatsoever.

Only, I haven’t worked now for over 4 years and my youngest is now 14 and can manage most things himself ūüėČ

Being in a very alert state drains energy rapidly, introduces adrenaline and can be sustained for variable but always limited periods of time before I start to struggle in a variety of increasingly unpleasant ways. Then there’s the recovery…..

I think becoming aware of this is the first step to doing something about it. It would benefit me enormously to keep relaxed no matter who’s visiting and whether they’re on time or not. At the moment, I’ve no grand plan as to how I’m going to reverse decades of ingrained behaviour but I guess I’ll start on it with my next meeting tomorrow.

All ideas, comments, thoughts and suggestions are very welcome!

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I DON’T KNOW HOW YOU COPE

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1502199311008My usual pithy reply to this oft-repeated gesture of sympathy is ‘because I have no option’ which is true and generally suffices. After all, no-one wants to be treated to a¬†viva voce¬†dissertation on coping with the slings and arrows of chronic illness.¬†

But I know you want to know, don’t you?

It comes down to just these three approaches:

Maintaining Low Expectations

I don’t go beyond the lowest rung of Maslow’s hierarchy of needs. Self-actualisation is so last century! I don’t compare or compete. My aim is simply to feel as calm, relaxed and comfortable as possible. If that has an ‘end of life’ vibe about it, that’s just how it is. I’m not ill enough to die (mercifully) but no-one would mistake my existence for living in its truest sense. Anything I manage beyond that is a bonus.

This works. After all, it’s the hope that kills you!

Relaxation

My nervous system involuntarily runs on fast-forward, like an LP played at 45 rpm. It dictates the play for every bit of me. This is exhausting, scary, uncomfortable and sometimes painful. Relaxation comprises being horizontal, breathing consciously and keeping calm. No candlelit baths and floaty music; tried that-far too stimulating.

Repeat this as often, and for as long as required, to achieve relative peace.

Distraction

Besides the distractions that come with life, there’s a real skill in finding stuff to do, or think about, that is commensurate with one’s current state of craptitude. It can’t involve much level of commitment as unreliability rules. It can’t be too boring as I’m still a sentient being. It shouldn’t be too stimulating or exciting or I pay the consequences. I fall back on audiobooks (shout out to Listening Books, an absolute Godsend of a charity), a bit of telly, spouting drivel on Twitter, and an occasional dive into Duolingo pretending to learn Greek.

And writing this, and communing with my offspring, and supporting Celtic, and looking at my garden and…..

And that’s it. Now you know!

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IF AT FIRST YOU DON’T SUCCEED…..

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Keen observers of this blog might have spotted that I’ve been somewhat reticent on the committing thoughts to the ether front. Not that I’ve been entirely idle in the last couple of years, just not sure that writing about it would be valuable to writer or reader. I’ve decided to give it another go and thought I might start with a brief overview of various steps I’ve taken in the quest for knowledge, treatment and recovery. In short, I’ve employed the services of a health coach, a doctor of functional medicine, and a psychotherapist. I’ve had a number of biochemical tests, the results of which have helped me understand a few things that are amiss, some of which I’ve been able to do something about. The coach and psychotherapist have helped me deal with the enormous challenge of ¬†managing a dysfunctional nervous system.

So, what did I discover that I could act upon? Quite a lot actually: vitamin deficiencies, mitochondrial dysfunction, food intolerances, the presence of and sensitivity to toxic chemicals especially lead and mercury, iodine deficiency, neurotransmitter imbalances, chronic infections, chronic hyperventilation and so on. It’s a source of deep concern to me that the NHS does not conduct these tests. Who can say what my prognosis might have been had mercury been identified as an issue when I raised it in 2006 as a possibility?

What steps have I taken? My diet has changed radically. It’s probably easier to list what I do eat: meat, sardines and mackerel, vegetables, potatoes, nuts, seeds and a handful of berries. I drink only filtered water and ginger tea. For a treat Ombars and Deliciously Ella energy bars. I lost over 3 stones in a year despite being horizontal most of the time. As well as being intolerant of wheat, gluten and dairy I’m off -the-scale allergic to eggs which I’d never have guessed!

I’m also on a regular supplement regime, and another one, pulsing on and off, to try to rid my body of the mercury which is stored in my tissues. I did try an infra red sauna which is highly recommended for sweating out toxins. Sadly, I had a truly unpleasant reaction and am unwilling to give it another go right now. The main thing I did was have my amalgam fillings replaced, over 4 intensely stressful sessions.

I’ve also added self-hypnosis and yoga nidra to my battery of relaxation techniques.

Am I better though? After all, that’s what I want. I think it depends on how you define ‘better’. If it’s overall function, then the answer is no. My ability to perform normal activities remains as grossly impaired as before. If it’s about coping better, having more knowledge and understanding, and being more confident in the choices I make then the answer is yes. Mostly. Largely, it remains as it always was: walking on quicksand, with no certainties, no baseline of ‘safe’ activity levels and a sense of keeping going, doing my best with what I’ve got.

All of this is ongoing. I’m due to take another test on my hormones soon and will be repeating the mercury sensitivity test. I don’t consider that the time and considerable expense have been wasted just because I am still very ill. The knowledge I’ve amassed alone makes it worthwhile. I live in hope that, over time, the small changes I’m making, or one I’ve yet to find, will finally unlock the big door marked ‘Healthy and Well’.

 

 

 

 

HOW ARE YOU FEELING?

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‘I feel like I’m discovering hidden nooks and crannies in a deep, dark pit of suffering. Occasionally, I stumble upon a ladder but, after a rung or two, it gives way and the pit becomes deeper, its sides more sheer and unassailable. Meanwhile, the rescue helicopter of medical science is grounded on a sticky platform of psychobabble, ego and scandalous politics. Such doctors as are obliged to venture close peer down at me, shrugging their shoulders and shouting helpful advice: ”Work within your capabilities”, ”Don’t fight your body”, ”It’s possible to relax too much” Sometimes, they try to throw a ladder but it’s too short, or made out of gossamer. Then leave me to it. Alone. In silence. In the dark. ‘

Or

‘I’m fine’

It makes no difference.

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 ‚Ķ..[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?