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

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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.)

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.

Confiteor

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In my last post I mentioned that the short answer to recovery is taking care of myself. Now may I confess that I’m not very good at this. Yet. We are all subject to external pressures that prevent us from doing that which would serve our health best: we may have jobs, children, elderly parents, homes to run and so on which need to be factored in. I call these our external environment. I’ve found, however, that my internal environment has as much, if not more, bearing on my ability to look after myself. Allow me to explain this by reference to three examples:

Thinking

Mental processes use a phenomenal amount of energy. I’m a solicitor. Until relatively recently I worked in a busy office. My job involved reading, writing, meetings, speaking, advising, meetings, analysing, planning, meetings, reporting, problem-solving, trouble-shooting, meetings, counselling, diplomacy and yes, meetings–lots of it and fast paced. Doing this over time has worn deep grooves in my brain. The need to use so much brainpower has disappeared but my brain craves stimulation and drives me to find it from other sources, the internet being the primary one.

No-one forces me to exhaust myself reading articles, blogs and tweets.

Eating

When I was in my first year at University I had a serious asthma attack, confining me to hospital for a week during which I was pumped full of intravenous steroids. When I got out I perceived myself as fat. Utterly horrified, I embarked on a restrictive diet, followed by a relieved binge. Thus started a lifetime of fasting and feasting, feeling great when I had my weight under control, a failure when I did not. I joined many slimming classes along the way, the ethos of these was to restrict fat intake. I equated eating solely with weight. I was addicted to diet coke. I’m ashamed to admit just how much of the stuff I drank. I’m still addicted to sugar. At no time did I consider food in terms of nourishing my body. Another groove worn into my brain.

No-one force feeds me unhealthy food.

Pleasing

I’ve been brought up to put the needs of others before those of mine. I’m very uncomfortable if people around me are unhappy and have the urge to fix situations. By doing so, I accept responsibility for what goes on in other people’s heads. Not only is this an energy-expensive process, it is ultimately doomed to failure. I find saying no to anyone an absolute anathema. If I do, I feel a pervasive sense of guilt. You’ve guessed it, another well-worn groove.

No-one forces me to please others.

Having acknowledged that I have ingrained patterns of thinking and behaviour that I recognise are barriers to my recovery, what can I do about it? After all, I’ve been 50 years in training to behave like this! The answer lies in the concept of neuroplasticity. I first read about this in Daniel Siegel’s book ‘Mindsight’ which I heartily recommend. Put simply, the brain is like a lump of plasticine. No matter how deep the grooves are worn, they can be smoothed away and replaced by healthier, more supportive paths.

This is not easy though. It is a process, not an event. It takes patience, dedication and effort. Most of all, it takes self-compassion. I cannot be harsh with myself if I find that I’m so engrossed in an article that I’ve exhausted myself, or eaten cake, or agreed to do something that I ought not to have done. I have read other peoples’ stories whereby they set rigid regimes for themselves with periods of activity and rest. I admire this approach greatly but I haven’t, as yet, managed to find a way in my life to make that work for me as I see it as setting myself up for failure.

Instead, I’m involved in a gradual process of deceleration where I am gentle and accepting, noticing any acts or patterns that don’t promote recovery and taking a break. I remind myself that I am ill, very ill, and must choose to take a different approach which, over time, will become ingrained.

By doing this, I bounce the boundaries of my glass case gently, easing my way back to health and vitality, largely by giving my sick body the rest it requires.

One final thought, the temptation to go wild on ‘good’ days needs to be resisted, gently and firmly. To paraphrase JFK, flood defences need to be built when the sun shines.

How good do you think I am at that?

Credo

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I believe that, given the right environment, internal and external, my body is capable of healing itself, returning to a state of homeostasis and affording me health that is characterised by vitality and resilience.

This is my belief. It is not a fanciful notion, fond wish or vague desire. It is a belief that underpins my thoughts, words and deeds where my illness is concerned.

For me, the alternatives are unthinkable.

What are they?

Either that I cede responsibility to an outside agency to fix me, or that I will never be well, ever. The former is highly unlikely given the current state of knowledge and engagement of the medical and scientific communities, and the latter would destroy my soul.

I am strengthened in my belief by my own experience. I have been well, in relative terms, during the course of this illness and will be so again, only better this time: recovered.

How will I achieve that?

The short answer is by taking care of myself. Nurturing mind, body and spirit.

But there is no simple answer. There is no right or wrong answer. There is only a willingness to listen, understand and engage with approaches that will lead me to health.

In future posts I'll explore those approaches, sharing my gratitude for the many people and resources I am blessed to have encountered.