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.

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What I Did On My Holidays

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eilidhh's 128As promised, here’s the lowdown on my break. The first couple of days were hugely relaxing, almost like a weight of responsibility had shifted .Mostly, I slept and read and ate just what I wanted. I glimpsed briefly a possibility of wellbeing. Thereafter, the break resembled a real holiday: gippy tummy and a hangover every morning!

So, what have I learned from this experience?

I missed my interaction on Twitter and Facebook but there is no doubt that without it life was calmer, with more space, and my head was clearer. Physically and mentally.

What else? For the first few days I did stop myself thinking about my health but gradually that thinking returned, not too surprising given the intense pain in my gut. I also found I was checking my heart rate. But I didn’t question myself too much about whether the things I was doing were correct or not. Forgive the pun, but I went with my gut instincts.

I tried to focus on enjoyment but the reality was that felt artificial. Either I lack the necessary imagination or the fact that I was within the same walls, with the same set of limited opportunities, made it impossible to engender any sense of satisfaction.

On the plus side, I did perform a few physical feats–emptied some boxes, made soup and….wait for it, walked to the end of my road (and back) without (so far) setting off a major setback. Might not seem much over the course of 10 days but I know the achievement they represent.

For me, trying to recover is a bit like stumbling about in a dark cave, not knowing the way out or even if there is a way out, with no-one able to guide me except the bright lights of manifold articles, stories and opinions which blind rather than show the way. Perhaps, only by living my own life and own health will I discover how to improve my lot, or, if this isn’t possible, to live as best as possible with it. My former doctor gave me a wonderful piece of advice: don’t fight your own body. Perhaps, for me, that’s the only advice I need right now.

In practical terms going forward this means:

1. Avoiding articles, stories of recovery, advice and so on and listening only to what my body is telling me.
2. Reduce the length of time spent on the computer. Enjoy quality moments and exchanges.
3. Be careful about my diet. Nothing too drastic but my gut dramas let me know that anything most certainly doesn’t go.
4. Aim for a relaxed approach to any activity; shift permanently the weight of responsibility about recovery that anchors me into a miserable cycle. Stop bloody worrying!
5. Stop feeling that I ought to be more than I am or do more than I can; go with the flow.
6. Keep testing my boundaries without apportioning meaning to any outcomes. Some days will be better than others.That’s true for everyone.
7. Continue to seek out enjoyment without guilt. Similarly, not to become despondent if nothing feels fresh, exciting or rewarding.
8. A recurring theme of this blog: practise gratitude. Make a point of noticing all the good stuff.

So there we have it. No miraculous recovery by trying to do things differently but some useful insight.

A final thought: I think the premise behind my break was right. Efforts to focus on recovery inevitably become a focus on the illness itself. When you focus on something it becomes bigger, stronger and better developed. It takes over. You identify with it to the exclusion, or suppression, of everything else about you and in your life. I think it would be in my interests to find something, ordinary or special, that occupies my attention away from the world of illness and disease, and which can be managed within my limitations. What that might be is as yet a mystery to me.

Resistance Is Futile

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The aftermath of my mum’s death has proved to be a period of sorrow, reflection and contemplation. A lot of sadness yes, but interspersed with moments of joy and gratitude especially to the many people who got in touch to express their sympathy. I’ve also become acutely aware of my own mortality and latch on to any stories involving illness, particularly cancer, and especially if it’s a terminal situation. Yesterday, I read about Lynda Bellingham, the effervescent actress who has written about facing up to terminal cancer. She described herself as a liver and lover of life. This resonated with me. It paints a picture of someone who cares about living their life to the full, wresting every last drop from the experience.

So I thought: what does it mean to live life to the full? Does it mean having many and varied experiences, travelling the world, seeing the sights, sampling different cultures, speaking different languages? Does it mean being successful in your work, gaining promotions and being recognised as an expert? Is it about having a successful marriage, having children or a successful social life, a wide circle of friends? Or is it about being creative: writing poetry, painting, playing a musical instrument, singing and dancing? Or is it about being kind and charitable? Does it mean being politically active, seeking to change and influence the way the world conducts its business? Or does it involves meditation, prayer and contemplation? Is it about having money in the bank and nice possessions? Does it mean having a comfortable home, a retreat , a space to call one’s own? Is it about peace of mind? Is it about embracing culture? Or having a passionate interest in sport? Is it about eating well, exercising adequately and taking care of your body? Is it about the pusuit of knowledge and understanding?

The answer is that there are as many answers as there are people. To use my favourite legal phrase: it all depends on facts and circumstances. Context is everything and it changes.

Resistance to change creates suffering. In my case, I realise that I cause myself physical suffering by fighting to do the things I used to take for granted and emotional suffering by believing my imagination about the things I ought to be doing. Specifically, I believe that in order to live my life to the full I ought to be living in a certain way. After all, I see my contemporaries doing this: going to work, raising their children, having nights out and holidays and various activities from the list above and I want this too. This longing causes anguish. All the more so because I did not choose my change of circumstances. I did not ask for this illness and I would like it removed, with immediate effect.

But hold on, isn’t it possible for me to live my life to the full in a different way, taking account of my illness rather than resenting its presence? After all, I was never going to be Prime Minister, Pope or a pop star anyway. Can I find a way to have a variety of enriching experiences, and enrich other peoples’ lives, within the context of my existence? In other words, can I reframe my life from one of loss, longing and suffering to one of fullness? If so, what, realistically, would that look like?

I think it begins with acceptance of my limitations. Toni Bernhard writes about this so beautifully in her book ‘How To Be Sick’ and I recommend a read of this for anyone trying to manage a serious illness. It’s about bringing peace to your heart, mind and soul. From there, to consciously direct my attention on what I do have and what I can do and the achievements I can make, not some mythical perfectionist ideal. Thence to listen to, and act upon, my instincts, being kind and compassionate with myself.

So, this might mean that a full life for me in any given day involves learning about the day’s events by watching tv, engaging in a social life by having a visitor or exchanging tweets, being creative by writing this blog or (on a good day) standing for long enough to make soup. Or counselling my children from a prone position. Or offering a listening ear and gentle advice. Or watching the changing seasons from my window: like an ever-changing triptych painting. Or reading and dozing, allowing my body to rest. Or taking pleasure in seeing, reading about and hearing the exploits of my friends. Or simply being: having time in peaceful solitude, untroubled by external pressures. Or being grateful for the many and varied ways in which goodness and kindness express themselves in my life.

This doesn’t mean that a corner of my soul doesn’t long to be outside gadding about with gay abandon; only that the thought doesn’t prevent me living my life, with all its limitations and debilities, to the fullest extent.

What does living life to the full look like to you?

Loss

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DSC02446One of the enduring themes of this blog has been the subject of loss. I’ve described how, in the last year alone, I’ve lost my career, home, social life, ability to go and see my beloved Celtic, and conduct relationships. Now I’ve suffered the most acute loss: my mum. She was diagnosed with cancer around the middle of July and, on 9 September, passed away gently.

In recent years mum devoted herself to caring for my children and me, staying with me for weeks at a stretch, taking the burden of running a household on to her frail shoulders. It is not without irony that I tell you that the last time I saw mum it was she, with a few weeks to live, who visited me because of my relapse. Thank you mum for that unwavering,uncomplaining, unconditional support.

Thanks also to the many people, known and strangers, who have offered their prayers, good wishes and support. Loss of a human being brings us all together. It brings out the best in folk. It is a shared experience where we all get our turn. It signifies change and adjustment. It allows us to pause, reflect then go on, bereaved but enriched also for having had the person in our lives.

For those of us who are ill, loss brings fresh challenges to bear.

For my mum, I am grateful that your period of suffering was short and your death peaceful and untroubled. Eternal rest grant unto you, may perpeptual light shine upon you and may you rest in peace.

Blessing For Complaint Handlers

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As my career in legal complaints handling draws to a conclusion, here are a few words I’ve penned for my friends who continue to do an amazing job:

May you have skin as thick as a rhino while
Your heart remains as soft as lambs’ wool

May you have a caseload both light and grave so
Your toil is substantial and worthwhile

May you have strength to endure green inked novels that
Disclose no identifiable complaint

May you have patience to withstand asseverations of
Corruption, collusion and conspiracy (again)

May you have comrades steadfastly at your side on
Those days, replete with darts that pierce and wound

May you have volunteers and overseers bless your work with
Decisions that make some sense

And may you know that you’re doing a damn fine splendid job that
Truly is of moment to many.

Resilience

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In the past week alone I’ve had a fair smattering of life’s slings and arrows. I can’t go into much detail as they involve other peoples’ business but suffice to say that a couple were notice of serious ongoing issues, a couple involved poor behaviour on the part of folk, one or two were reminders of just how ill I am, and another was quite amusing.

If I’m honest I think that these events would have taxed the capabilities of someone who was fully fit. When, however, you are ill finding the resilience to deal with what feels like a tsunami of problems, irritations and slights is hard. Particularly with this kind of illness which interprets problems as an attack and ramps up my already dysfunctional nervous system to deal with them.

This creates an unhealthy cycle. Horrid event——-> worry/concern/debate/self-doubt——–> physical reaction: symptoms are increased, functionality decreased——-> anticipation of the next awful incident——–> greater sensitivity and decreased ability to withstand the next horrid event. When, as happened this week, there are more than a few of these in a short space, with little recovery time in between, my health suffers badly.

Resilience is a key component of good health. Upsetting events happen all the time; they are a normal part of life. How can I build the necessary resilience when I feel fragile?

Ideally, it would be good to get off the world for a bit! Given that this isn’t likely to happen, what else can I do?

• Firstly, be as kind to myself as possible. Recognise that it is ok to feel bad when bad things happen.
• Try to minimise the age-old patterns of worry, self-recrimination and doubt. Make a decision and let the situation rest. Don’t use precious energy going over and over the events.
• Rest properly using mindfulness and relaxation techniques to give my body the space and time it needs to do its healing work.
• Simplify life as much as possible; take the easiest routes where the harder would be the automatic response.
• Be open, curious and non-judgemental about horrid events; by assigning them a level of horridness I’m building in a level of reaction which, at a physical level, will translate into a huge over-reaction. Tone it all down.
• Look for help and support.
• Concentrate energy on the good stuff that is also happening. Find something to make me smile or laugh.

In other words, there is much about my external environment I cannot change so I need to adapt my internal environment to allow me to withstand life’s knocks without them, in turn, making me more ill. It is a tough and ongoing process but absolutely vital to the recovery of my strength and wellbeing.

Mind your Head

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‘Work within your capabilities’ was the sage advice I received from my cardiologist when I was discharged from his care. I was then on my own trying to work out exactly how to do that. Only I didn’t know what my capabilities were any more nor what work it would be safe to do. I think this dilemma is a familiar one for many of us.

I can’t remember now at what point meditation was suggested. I’m sure I would have been fairly sceptical, associating such with Eastern mysticism. I looked into it though and found a fairly confusing world with different terms and suggestions, books, audio, visualisation, body scans, self-hypnosis and so on. Lots of folk punting their wares!

I like simplicity so the following is my distillation of the essence of what I’ve found, experienced and the benefits. I hope it helps anyone who might be considering trying these practices or, like me, finds it all a little confusing.

Mindfulness or Mindsight

This is about cultivating awareness of the contents of your mind, body and world, and that of others. I think of it as being aware of the awareness of your own awareness! It is done by observation with openness and objectivity. You will pay close attention to thoughts, feelings, bodily sensations, information and also their inter-connectedness and causation. For example, you may be having worrying thoughts which cause your muscles to tense which causes a headache which causes pain which causes a worrying thought or low feeling. You may also notice that you are not any one of these elements–you are not a pain, or a thought or a feeling–and that it is possible not to be dragged down or overwhelmed by such.

Dr Daniel Siegel wrote a book called Mindsight and I urge you to consider reading it. I found it fascinating and also very comforting.

Meditation

This is about sitting or lying still focusing your attention solely on an object, image, audio, mantra, prayer or your own breath. When your mind moves away from the object of your attention, you bring it back repeatedly, with gentleness and kindness.

Mindfulness Practice

This is about sitting or lying still and paying close attention to your mind, body and world. You can do this in a number of ways. Simply watch what arises in your mind, or choose an area on which you might like to focus. For example, by conducting a body scan which involves going through your body systematically, paying attention to how each bit is feeling. Or you can choose to pay attention to your thoughts or emotions or anything at all.

I used a form of this practice when I travelled to and from work on the train. In the morning I would sit still (if I was lucky enough to get a seat!) and mentally prepare myself for the day ahead systematically going through my to-do list. On the way home I thought about each of my children, other family members, household tasks that needed to be done and so on.

There are a huge number of aids to mindfulness on the market. If you want to get started, listen to a lovely example called the Wheel of Awareness meditation. Devised by Daniel Siegel and read by Dr Bob Leckridge here. Incidentally, I could never picture a wheel, always a vase of daffodils!

Relaxation Practice

I view this as a meditation practice that involves first mindfulness then an intervention to change what you find. During a body scan you consciously relax your tense muscles, soothe any unhelpful thought patterns and create a sense of ease.

You can do this in many ways but I find following a relaxation audio to be most helpful. In particular I have enjoyed Andrew Johnson’s Relax and Deep Sleep.

Self-hypnosis

I’ve encountered this is the form of Paul McKenna’s Instant Calm audio. What happens is you lie still and count back from 300, returning your mind to this when you lose track, while Paul speaks to your unconscious mind, saying some powerful and soothing words.

Heartmath

This involves sitting or lying still and consciously re-creating feelings of joy, ease and contentment. It is best done at the end of a successful meditation or relaxation session when your mind is still and best able to. This causes your brain to create stress-relieving chemicals, smooths out your heart rhythm and engenders a feeling of well-being. For a fuller explanation of how to do this and its benefits read here.

BENEFITS

I’ll preface my remarks here by saying that these practices are not easy and, often, I’ve been too ill to make them work for me. If this happens, then don’t force yourself. Instead, give yourself a break and return to them when you feel the time is right but I think it’s worth giving any of them another go, bearing in mind that there is nor right or wrong way to do any of them,  because when they do work, this is what happens:

1. Your muscles, mind and brain relax. The washing machine of swishing thoughts is switched off or at least calmed. You might even drift off to much-needed sleep.
2. You feel a sense of ease, peace and contentment.
3. You make better choices from a mind which is calmer, enabling you to pause, reflect and choose your response to any situation.
4. You get more done when your mind isn’t using up precious energy in whizzing thought patterns, or tensing muscles, or reacting unconsciously to urges.
5. You take the pressure off your exhausted brain, allowing it the space to do its healing, recuperative work on your body.
6. You sleep better as your brain waves are soothed from high alert mode to relaxed.
7. Your heart rate and blood pressure are decreased and heart rhythm improved.
8. In the long term, you change the architecture of your brain, creating useful, relaxed patterns of thoughts, emotions and behaviour and, above all, proper bodily regulation through a properly functioning autonomic nervous system.

These practices are the key tools in my self-repair kit. Nothing else I’ve found comes close to inducing the conditions that will allow my body to return to a state of homeostasis, strength, vitality and resilience.

I’d be very interested to hear your thoughts on what works for you: any tips, recommendations or resources you feel are useful to help me work within and expand my capabilities.