Monday, May 6, 2013

Chronic pain: golf balls, marbles, pebbles & sand

I saw a quote on  website recently that really made me think. It said:

"my life is full of pain"

I stared at it for a while, even kept the tab open for several days, going back to it every now and then and wondering what I really thought about it.

I thought a lot, so bear with me...

It made me think about this story that, throughout the cyberyears, has appeared in my inbox many times and (more recently) has popped up on various types of social media. True story, or urban myth, I like it.  It goes something like this:

A professor is giving a lecture to a large group of students.  He starts the lecture by holding up an empty jar which he then fills will golf balls.  He asks the students if the jar is full; they reply yes, it is full.  Then he opens another box on his desk with marbles inside.  He pours some marbles into the jar, watching them fill the gaps between the golf balls.  Again, he asks if the jar is full. (I'm hopeful here that being university students, they would see where this is going and not answer yes here, so in my version they're going to just watch expectantly as he produces another box.)  It contains tiny pebbles (I personally imagine these to be like ones used in a fish tank) which he pours into the jar and they trickle into the gaps between the golf balls and the marbles. At this point, the jar appears to be full, and there are no more boxes on the table.  He asks the students again: is the jar full? He then reaches into his desk drawer and pulls out a bag of sand. He slowly pours the bag of sand into the jar, watching the tiny grains fill every crack and crevice between the stones, marbles, and golf balls.  Now is the jar full?  At this point, the students agree: yes, the jar is full.  The professor, however, has one last trick.  He produces a bottle of beer from the drawer, opens it and pours it into the jar where the liquid is soaked up by the sand.

The analogy (in the version I have seen) is that the jar represents life.  The golf balls are the most important things in your life - friends, family, pets, health, people you care about and have a responsibility to.  The marbles represent other responsibilities in your life such as work, studying, volunteering or other important commitments.  The pebbles represent the smaller essentials - a social life, relaxation, hobbies - whatever is required for some 'me' time to keep you sane(!).  The sand is everything else - errands, tasks, bills, worries, stress - somehow, these things will fit in somewhere.  In the version I read, at the end one student asks about the beer.  The professor replies that no matter how busy your life is, there is always time for a beer with a friend.

I've always liked the analogy.  Strangely, being ill for such a long time, and being away from a 'normal' reality during a time when most people are just throwing themselves into it (i.e. our twenties), has given me time to really reflect on the important things in life.  So breaking it down visually,  I think, is very effective at making people really stop and think about what is important, and realise that you can alter your perspective, and your priorities, depending on what way you look at your life.

However, the quote at the top of this post made me think about this analogy differently.  I think it can also be used to explain chronic pain (or, by extension, any chronic medical condition).

Pain is a horrible thing.  Everyone knows that.  But most pain is transient - even the pain of a broken bone, or childbirth, is temporary, however painful it may be at the time; the searing agony of stubbing your toe is over in seconds; the sting of a papercut always feels like the worst thing ever when it happens (or when you get lemon juice or alcoholic hand sanitizer in it later!), but again, after a day or so, it's healed and forgotten about.  Emotional pain, depression, or severe anxiety, are harder to make comparisons with, as everyone has very different personal responses to different situations, or to internal emotional pain (although physical pain is highly subjective too); but I think the analogy has relevance here as well.

Chronic pain - physical or emotional (and/or both, as they can be inextricably linked) - is impossible to truly understand without experiencing it.  It is wearing, exhausting, draining, energy-sapping, emotionally challenging.  It can be mind-freezing, gut-wrenching, pillow-biting; for me, it has rendered me speechless, breathless, sobbing, nauseated, dizzy, light headed, faint, crying, moaning, whimpering... at its very worst; and at all times, a dull, constant, heavy ache - like another, heavier, body, attached like a magnetic imaginary twin, permanently pulling you down.

At my last specialist physio appointment, I decided it would be helpful to 'draw my pain', to map it out and visualise it - I thought it would be simpler than spending an eternity trying to describe all the facets of it.  Here are my drawings:

Left: Right scapula pain: top drawing - looking at the scapula from the back; bottom drawing - looking at the scapula from the front (as if you can see through the chest); Right: drawing showing pain in spine and ribs - as if looking from the back. (The colours correspond with different types of pain, explained in the colour-coded descriptions.)

To be honest, I'm not entirely sure what my physio made of it.  I kind of got the distinct impression most of his adult patients don't hand him pictures they've drawn and coloured especially for him...  He studied it silently for several minutes (as I quietly wondered if I'd crossed a line and might require psychiatric evaluation) and came to the perfect conclusion: "It's a mess.  Your shoulder's still screaming at you and everything hurts." In a nutshell.  But he kept my drawings.

So, back to the quote: "my life is full of pain".  Most of the time right now, I feel like my pain dominates.  No matter what I do, however much I (usually) enjoy it, or more typically right now, force myself to do it because I do (I WILL make myself) enjoy it - the pain is still there.  It can be ferocious, overwhelming, sometimes it hits me like a freight train - one minute I can be making lunch, the next minute I'm sitting on the kitchen floor, watching the black stars sparkle above me, sweating, and wondering exactly how I got down here (again).  The hardest thing for me is not knowing when that freight train is coming - sometimes it can be a tiny movement that I'm sure I did a dozen times the previous day; others it's fatigue - when I just push my(stubborn)self a little bit too hard; or try to do a little bit too much in a day.

And, yes, it's frustrating, it drives me crazy, I wish it would just simply disappear; sometimes I cry with pain - still; other times, with sheer frustration. But despite all that - and I've described it as much as possible to really make this point - despite all that, I would NEVER describe my life as being filled with pain.

Back to the analogy... Some days, the pain is in the golf balls - these are the worst days, where the pain is big, angry, dominating, and getting in the way of everything else; but on those days I still have space for some marbles and pebbles - emails from friends, that always cheer me up, a good TV show streamed online, some chocolate, and perhaps rather unhealthily (but unfortunately necessary) my concoction of pain medications and topical pain creams and gels... and my life-saving ice machine.  The sand - as in the life analogy, the annoying things are not priorities on those days, bills, emails, whatever I have to do, it can always wait until tomorrow.

(This should always go without saying, but my Mum is always a golf ball - the most important thing to me on bad days and good days, and a constant presence and support throughout.)

On other days, the pain is the sand - allowing me to enjoy the big things a bit more, but - rather like when you go to the beach - the sand still finds its way into everything!  But, if you go to the beach, you're going to get sandy... it doesn't stop you going.  Right now, everything I do increases my pain and I do have to judge how much I can tolerate and what is 'worth it' - and finding out where that line is has been close to impossible; it seems to change every day - however, it's is still not going to stop me trying.

So, for anyone who thinks their life is too full of pain to make space for anything else, remember the glass jar with the (almost) infinite capacity.  Life is what we make it, and no-one ever said it was easy.

And of course, there's always space for a cup of herbal tea with a friend... even if it's on skype... with me curled up in bed attached to my ice machine....

Be careful when you fight the monsters, lest you become one.
  ~  Friedrich Nietzsche

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