Welcome to the Real World

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Swan's Head with Dripping Beak

When speccy spoke of pacing the other day, my entire being sighed and nodded knowingly in agreement.  You see, pacing is something of a ‘buzz’ word in chronic illness.  Although it’s not some magical cure-all or panacea, it does rather let the ‘experts’ off the hook.  The responsibility is handed firmly back to the patient, they are to manage their own illness, it is up to them.

Whilst I firmly believe that self-awareness and self-management are important, if not vital, components of maturity, of adult life, this doesn’t quite seem fair.  There was a reason why ‘experts’ were invented after all.  To be left, abandoned, to your own devices can be isolating, frightening and threatening.

It’s sometimes said that the best gift you can give the chronically ill is comprehension.  Support and understanding are absolutely crucial and they have to come from external sources.  Yes, as individuals, we can offer ourselves support and understanding but it’s not the same.  In fact, can any individual really generate and sustain support, understanding, belief, appreciation or acceptance if there is none forthcoming from external sources, the community around them?  (And when someone is chronically ill, can they really physically support themselves?  If they could, they wouldn’t be the ill ones).  This would require almost unfathomably ridiculous levels of self-belief and self-confidence.  I don’t think many of us have those.

Besides, chronic illness eats away at your self-belief and self-confidence.  It destroys value systems.  Even if you never, ever doubted yourself before, it will make you doubt now.  Sometimes you will think that you’re going crazy.  That’s why external sources of belief, support and understanding are so important.  No man is an island, apparently.  We don’t need flattery or lying to, we simply need to be acknowledged, for our illness to be acknowledged.  Or better still, understood.  Appreciated even?

Perhaps, they, those ‘experts’, feel that this approach is temptingly flattering.  You are the expert, you know yourself better than anyone and the nature of your illness too.  You are the expert.  Empowerment in action, another favourite ‘buzz’ word of our times.

However, it carelessly disregards the reality, how the dynamics of self, relationships, community, society really work.  No man is a self-actualised island existing in splendid isolation, an unconnected self on a planet of unrelated life.  As if such an ideal were even possible.  Or healthy.  We humans are cities, places buzzing with connections, with a strong sense of past and a need for a planned, controllable, reliable future.  We have habits, customs.  We are often living to the full extent, if not beyond, of our resources.

When we fall ill, we bring a lot of baggage with us.  Our own expectations, hang-ups, complexes, fears and prejudices.  As well as those of everyone else too.  We cannot be expected to become a self-actualised island in the face of such odds.  Nor should it be required, we are cities after all.

(As a side note, isolation is an often recognised and accepted issue for the chronically ill, so it seems a little unwise to propagate it).

There are other ways too that pacing is fundamentally flawed.

Another situation where the term ‘pacing’ is popular and enthusiastically adopted is in sport.  (If there couldn’t be more difference between these two groups of proponents!)  Top athletes, marathon-runners, you name it, they all talk about pacing, it’s a wonder-word to them too.

However athletes do not exist in isolation.  They are part of a team.  And not just any team either, these aren’t necessarily just their loved ones who for the chronically ill will make up the bulk, if not the entire population, of a support team. Oh no, the athlete is surrounded by ‘experts’.  Whilst it is recognised that he knows himself and his abilities best, he turns to external sources to help manage and advance, he knows that he cannot do it alone.  There will be a coach providing one-to-one support, usually someone who has a wealth of experience and knowledge in a particular sport.  The best coaches know the ropes and they know them inside out, upside down and back to front.  They have the inside story on each challenge that an athlete will face.  And they know their athletes just as well.  They know how to get the best from their athlete, how to maximise their potential, when to push’em and when to ease off.  But these days, it isn’t just the coach who makes up the support team.  These days, there is a vast network of ‘experts’, professionals in diverse fields all bringing their knowledge and experience to bear, to allow the athlete to achieve his potential, there may be nutritionists, physiotherapists, masseurs, sport scientists, doctors, psychologists, administrators, legal experts, public relations specialists … the list goes on.  No athlete is an island.

So with all this support, knowledge, expertise and belief propelling an athlete forward, does pacing actually guarantee a win?  Well, think over some of the interviews you may have heard with athletes after some event or other.  You will hear them talking of peaking too early, of having had a bad day, of the weather being against them, of the altitude being unfavourable, of having two events too close together, of having had troublesome journeys or connections.  Even with all these experts behind them, even with all their own self-belief and training behind them, pacing is fallible.  Highly fallible.  It is not a science.  We humans generate too many variables and respond so differently and unpredictably to situations, even familiar ones.

One Swedish furniture company apparently tests all of their new sofas with a special machine which simulates someone, a rather large someone, jumping on the sofa countless times.  They are measuring endurance.  When those figures are produced, they can then guarantee their furniture for a specific period.

What does this have to do with pacing?  Well, the essence of pacing is endurance.  And how do you measure that in humans?  We are not identical sofas manufactured to exacting standards.  (In fact, I’m pretty sure that some of us feel like second-hand sofas anyway).  But it means that the test is no longer fair because not all the sofas can and will pass.  And think of that old relic in your sitting room, just because it’s rather old and sorry, are you going to throw it out?  Or will you overlook its faults, it weaknesses because it’s deliciously comfortable and been part of your family story for such a long time?

There are other problems too when it comes to measuring endurance in humans, not only are we all built differently but we’re not tested equally either.  The tests that a human faces, even in normal everyday life, are random.  There is no uniform test.  And the tests that humans face are not necessarily designed to be passed with flying colours.  And how do you measure endurance when humans have the unpredictable trait of responding differently in the same circumstances?

Endurance is really the baseline of pacing.  Pacing requires you to establish what you are normally capable of, what you can usually endure.  Once you have established this elusive baseline, you can pace yourself, not exerting yourself beyond this threshold and therefore not exacerbating your condition.  Eventually you will be able to build on the baseline, increasing gradually in baby-steps increments your abilities, your endurance, your baseline.

There is some truth, some science behind this.  But even experienced athletes can find that their baseline fluctuates and that sometimes there are just ‘bad days’.  How much more so for the mere mortal struggling with a chronic illness!

Endurance, I don’t think, can be quantified and measured in humans.  Endurance seems to be one of those qualities that meanders between the physical and the psychological.  There are few things that are clear-cut, black and white where humans are involved.  And whilst an athlete knows that they can run this fast for this long or whatever else their discipline requires of them, a purely physical endurance, how predictable or reliable is chronic illness?  This athlete is an individual with high levels of self-belief and self-confidence, yet whilst he may be able to endure physically, the psychological can knock him for six.   Chronic illness does not neatly exist only in the physical, or mental, there is a great deal of psychological.  We bring all that baggage with us, remember?

So if endurance cannot be quantified and established, fixed at a set rate even one individual, how can pacing really be expected to work?

But then it gets more complicated.  We humans don’t exist at some monotonous baseline; we peak and relax, physically and psychologically.  Our lives are varied.  Even if we had that baseline fixed and we could measure everything we did against it, is that really how humans live?  Just because we are ill, even house- or bedbound, we are humans with a strong sense of will.  We want to do things.  We live in a society where our value is dependent on activity.  We measure success by what we do, how much we do.  There are things that must be done.  Life doesn’t stop when you become ill.  There are still all of these everyday responsibilities to be taken care of.  And there are times, when we just desperately want to do something, maybe to alleviate some of the boredom and frustration of being so ill so much of the time, maybe it’s because we just want a glimpse of our old lives.  We rarely say no.  We’re not programmed to say no.  And so our pacing suffers, even if existed in the first place.  Real life continues around us and continues to have expectations of us.  We also have expectations of ourselves too.  Modern society is not renowned for its measured pace.  And there isn’t much allowance given for the chronically ill.  Pacing goes out the window, you have to live.

Whilst Chronic illness can be boring and frustrating, it isn’t monotonous.  Whilst real life continues to throw challenges us, things that we must do regardless of our health or energy levels, chronic illness itself doesn’t exactly help matters either.  Few chronic illnesses are predictable.  They are not reliable.  Most of them aren’t even quantifiable.  So how can you apply pacing to the untameable?  The worst of chronic illness is never knowing quite how something will affect you until it’s too late.

Pacing allows a veneer of delusion that someone is in control.  That the beast of chronic illness can indeed be tamed, be domesticated and invited into polite society.  It would be a comforting notion if it wasn’t so obviously false.  But yet countless patients dutifully try to implement the impossible, they try to pace themselves, in an almost vain hope of recovery.  If recovery or remission does occur, it rarely seems to be anyone’s hands.  There is no success guaranteed with pacing and yet the patient has had to take full responsibility for the management and successful outcome of their illness.  Is this failure or just stupidity?

I don’t think that pacing can be that panacea; I don’t think it is the solution.  There is an awful lot more involved in humans, in illness and in real life.  Pacing is the equivalent of a highly restrictive calorie-counting diet; it’s punitive and doesn’t take into account those ups and downs, the feasts and famines of real life.  Oh, and they haven’t managed to invent the calorie either.  Pacing is a farce.

We need to be realistic.  We do need to recognise our personal limits and accept that these will often vary.  We need to recognise and accept that if we choose to participate in one activity then it will often be at the cost of something else.  We cannot have everything.  Sometimes we get a look at the cake but it’s rare that we get to eat it.  We need to accept these things for ourselves, to reject all the baggage and activity-dependent value systems that we were brought up with and are surrounded by still.  But we are not islands; we need the people around us to do the same too.  We need their support, belief and understanding in order to live, to be allowed to live at our own pace.

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11 thoughts on “Welcome to the Real World

  1. IE, your writing here and comments elsewhere are so very perceptive. The word ‘ polarised’ comes to mind as I read: those seeking a solution, it seems, have noticed the benefits of ‘pacing’ and somewhere in the communication process the message has become polarised as a solution. When in fact, it belongs further down the continuum as a strategy. All the best as you find the right place on the continuum.

    • I think my journey at the moment is all about balance and I’m trying to find it in many areas of my life. I like your description of pacing as a ‘strategy’, that sums it up to me. Thank you. :)

  2. What jumped out at me were the lines, ” Pacing allows a veneer of delusion that someone is in control.” What is this intrinsic need that we have to be in control? What prevents us from aligning more of ourselves to our intrinsic passions?

    Great post.

    Shakti

I'd love to know what you think, concrit is especially welcomed on fiction pieces. Thank you.

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