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?

Ordeal Scale

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I’ve noticed that my degree of recovery (or otherwise) can be gauged roughly according to a scale of how much of an ordeal any action or event creates.

 

For me, an ordeal is defined by any action which creates serious, abnormal and distressing symptoms or where the anticipation of any action or event creates a debilitating sense of anxiety causing physical symptoms.

 

Here’s a highly unscientific scale I’ve devised of activities which might constitute an ordeal:

 

  1. Lying flat
  2. Light, sound, touch, reading or watching tv
  3. Turning over
  4. Being downstairs
  5. Computer interaction
  6. Sitting up
  7. Standing up
  8. Brushing teeth
  9. Standing for increasing periods of time
  10. Shower
  11. Walking/pottering around the house
  12. Light domestic tasks
  13. Having visitors
  14. Making meals
  15. Walking outside for increasing distances
  16. Being driven
  17. Driving
  18. Attending medical appointments
  19. Social visits
  20. Train journeys
  21. Shopping
  22. Attending social events
  23. Days out
  24. Holidays home and abroad
  25. Working full time
  26. Absorbing impact of emotional upset
  27. Managing infection

 

I’ve managed all of these without ordeal during the currency of this illness but since my major relapse in June 2013 I’ve managed only to get to no. 14.

 

One of the principal reasons for recording my thoughts is to try to discern some pattern, some causation that might inform my choices and actions. I confess to a devil that lives in my mind called Major Worry that the deterioration in functionality since 2013 is irreversible and that I may never again get beyond housebound.

 

I have my times of sheer despair when I find myself sliding back down this scale. Two nights ago, I sunk as far as no. 3. I console myself with the thought that my functionality is variable and what can go down can of course go up.

 

My prognosis is uncertain so it seems to me counterproductive to make an assumption that I’m doomed when the reality could quite easily be the opposite. So, perhaps foolishly, I choose to believe that I will, over time and giving myself favourable conditions, climb up that scale, inch by excruciating inch.

 

Today I’m having a visitor. I’m not anxious about it (hooray) and it remains to be seen what effect the interaction will have. Next week I have an important medical appointment which involves me being driven to Glasgow. I am anxious about this but will do it anyway because I anticipate that the long-term benefit will outweigh any potential risks.

 

I wonder just how many of us live with this sort of scale every day?

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.)

Positive Thinking? Aye Right!

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Recently, someone asked me how I was doing and I responded: absolutely fine for someone with no man, career, health and in the process of an enforced sale of my home. What’s more I meant it. Because how you’re feeling can be down to your attitude of mind, how you choose to think about your situation.

This reminded me of an exchange I had had on Twitter where I had argued against the proposition that there is power in positive thinking. So, have I just contradicted my argument? Let me explore this a little further.

Thinking happens both automatically and purposely. There is a whole spectrum of thinking–negative, catastrophic, positive, realistic, optimistic, dreaming, imagining and so on. Thinking influences the way we behave, the emotions we have and how we interact with ourselves and others. Can choosing to think in a particular way influence our health, particularly our physical health?

A part of the self-help industry, built on extolling the virtues of positive thinking, would have us believe so. In one book I read it suggested that if you repeat a positive affirmation for long enough it will become true. I picked one and tried it. It was : I am strong, I am healthy, I am powerful, relax I can manage. It was a lie. I knew it was a lie, my body knew it was a lie, my mind knew it was a lie. It was false positive thinking. It didn’t have a miraculous restorative effect on my physical health. There was no power in this type of positive thinking, for me at any rate.

Then I read Danea Horn’s book Chronic Resilience in which she posited a new approach called Honest Thinking which suggests that, rather than forcing yourself to be positive, or becoming stuck in permanent negativity, you should think honestly by recognising what is true at that moment.

This resonated with me. My mind will create negative thoughts for me based on age old stories I’ve told myself. Let’s take an example: ‘I’ll never be well again’. When that thought arises unbidden I first have to notice that it’s there in among all the other chatter going on. This involves mindfulness, a subject I’ve been studying for a while. Then I have to ask myself: ‘Is that true? Is that helpful?’

For me, no it’s not true or helpful because I do not know what my prognosis is. From there, I work at replacing that thought with one that is closer to the truth. To do this involves a conversation with myself that starts with self-compassion for feeling the way that produced the thought, then moving towards an honest assessment of the moment. For me that is: I am unwell just now, I want to be well and I commit to being open to any approaches that will bring me the health I seek. Then I have to go on and take the action that supports my thinking. This has a beneficial effect on my physical health.

When you go through this process with other negative thoughts, ultimately your outlook will become more realistic, neither negative nor pretendy positive. And it allows for imaginative and creative thinking, freeing yourself from outmoded patterns.

I think, however, there is a further step that is open to us and that is to actively look for the good in any situation in which you find yourself. In my case, I’m retiring at the end of this month because of my poor health. It is not a choice I would otherwise have made but it is now my reality. I have felt the loss of my career and I daresay I will do so again but, for now, I’m choosing purposely to see and think about the good in my situation: principally, I now have time and space in which to heal, lots of which I spend with my children, being the best mum I can be.

And I believe you can go even further than this: to pay attention to, appreciate and think about just how remarkable and wonderful our world is. My last post A Picture from Polmont was about just that. Then feel grateful for all the gifts you have. I see this in action every day. The most inspirational people are often in hellish predicaments choosing gratitude over resentment, appreciation over envy, love over hatred. Too many to mention but you know who you are and I’m in your debt.

So, think freely, think honestly, think widely, think with imagination, appreciation and gratitude and you will think healthily.

This is what I think. What do you think?