IF AT FIRST YOU DON’T SUCCEED…..

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progress

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?

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.