Wednesday, January 28, 2015

That kaleidoscope...

After reading my last blog post, my mum said she thought my kaleidoscope of butterflies  description was a bit tame - did it really describe my pain?  The answer to that, which was her point, is a resounding NO.  And it wasn't what I meant - it's definitely not all unicorns and butterflies chucking up glitter and pooping rainbows while I lie (in between torture sessions.... and by that I mean physio and daily exercises.... and generally moving) and recuperate from surgery.  Nowhere close!  When she finds me lying on the floor (the sit before I crash logic), or doubled over in pain in some contortionist position, trying to put pressure on a painful area - "It feels like I need to hold my scapula in place" or "my rib has popped out, I'm just pressing against it"; it is easy for me to understand why any kind of symbolism conjuring up nice pretty happy butterflies does not seem adequate to her.  And it's not. It does not describe my pain at all.   In truth, I loved the words, the imagery it conjured up as I was trying to describe a fluttering sensation that occurs with the spasming I get frequently; but the colorful idea spoke to me regarding my pain - my pain is like a kaleidoscope.

The butterflies are a description I have used before to describe strange fasciculations I get - kind of like that weird twitchy feeling you occasionally get around your eye; - that's a fasciculation.   I get them in the muscles right up the side of my body, often immediately after severe pain, accompanying spasms; or sometimes as a sign it's about to begin.  It's as if there is a closed space and million butterflies, all fluttering their wings within my body. Sometimes you can actually see it (freaked my sister out once!) It's not exactly painful, it's a strange sensation, unpleasant mainly because it always accompanies severe pain.... Which - it goes without saying - is painful!

Thinking a bit more about it, the kaleidoscope is a perfect way to describe my pain.  I love kaleidoscopes.  I've always wanted one of those test-tube type ones with confetti stars suspended in some form of liquid, the ones you just tip up & down to watch the colours and shapes through the viewer. Like these:

My pain is colourful and fluid - ever changing. It's proved impossible to understand and this has been one of the reasons it is so difficult to treat.  "It" - apparently it is quite common, after a certain point, to talk about the painful part of your body; or the pain itself in the third person.  I've read various forums, blogs and other stuff about it online, and also become aware of other patients I talk to at physio doing the same.  I've commented recently that 'chronic pain' - or even 'chronic injury', which feels more accurate for me; but medically it's 'chronic pain' - needs its own name.  It's not like breaking a bone and being back to normal in a few weeks; or like getting a migraine; ripping off a toenail; stubbing your big toe; falling out a tree; flying over the handlebars of a bike; tripping up a kerb... (yes, this is a list of personal experiences; enough to make my point I think) - some of those things hurt more than others, some do take longer to heal than others, but they all heal. Properly.  Afterwards - and during - they feel totally normal (just sore), still a part of your body, and you never suddenly realise you've started referring to your stubbed toe as Timothy*.  

*Not a personal experience

My physio in Scotland, before he retired last year, told me that I "felt different" every time he manually worked on me, and that didn't make sense to him.  In his wealth of experience in treating injuries, he didn't know what to do with that.  My scapular-expert physio (I'll start calling him 'M') here has said the same.  It's not logical - you get injured, you start to heal.  There may be hiccups along the way, little bumps or plateaus in the road, but ultimately there is a relatively steady upward slope of some sort.

'Normal representation of healing'

Mine looks more like this: 
Representation of my 'healing' journey

(Currently optimistic that my recent surgery has been highly beneficial; unfortunately I do
know I can plummet into the negative very quickly.... but I'm being an optimist right now...)

 At home, my physio treated me as I 'appeared' each week. He focused on doing what he could do to try to keep my pain levels as manageable ('bearable' is more accurate) as possible; to calm the 'angry nerves' and inflamed tissue  - because he had no guidance, no further diagnoses or investigations into what was happening; no feedback from any orthopaedic, nerve or musculo-skeletal specialists.  Although so much is still unknown, here I have a world-renowned physical therapist who specialises in chronic pain and crazy shoulder/ scapular issues; I have various specialist doctors, and a wonderful PCP who all know my case well, and my awesome physio who has been treating me, literally, from the day I fell.  And - amazingly! - they all talk to each other! Groundbreaking idea!  What a shame they don't do that at home.

When I was back in Scotland last year, I had virtually no other medical support
 and without my physio's treatment, I know I would have been in a far worse position than I was last July anyway.  To be honest I didn't actually realise how bad I was until I got here.  I knew I'd been struggling at home, but it wasn't until I saw my mum's face, and cried at the airport (not something I usually do); had those first few days of having food made for me; not having to do anything like get to a supermarket to get food; or drive myself to a doctor appointment that I realised exactly how bad things had become.  I was indeed, treading water.  When I went to see my physios here and both physical therapists' measurements and assessments of my shoulder were so awful, it really just fit with the rest of my life.  Except my shoulder was stuck together instead of falling apart, like the rest of me.

Treading Water

Back to the kaleidoscope.  I have previously described my pain as colours.  I am a visual thinker; I dream vividly in colour, and the different feelings and sensations I get do make me think of specific colours.  Thinking of a kaleidoscope turning, constantly changing into different shapes and patterns of different colours seems the perfect metaphor for my pain.  And just to be clear, I'm not thinking pretty flowers and butterflies - think more daggers and nails, live wires, meat cleavers and claw hammers all slipping and sliding unpredictably into different arrangements.  That probably gives a better illustration of my pain.

The kaleidoscope image also works when I think of my body being the slowly turning kaleidoscope, where my ribs, scapula, arm, hand, fingers, neck, vertebrae are constantly changing positions - contorting into interesting patterns with body parts all in the wrong place.  That is kind of the way it feels - ribs dislocating, scapula winging, head of humerus sticking out the front of my shoulder, superior angle of scapula looking like it could pierce my skin, twisted vertebrae, visible muscle spasms, fasciculations, shaking muscles….. new 'pain patterns' with each position.

So when I read kaleidoscope of butterflies and thought it was a beautiful expression; I also thought 'kaleidoscope of pain' - that's a good way to describe it! It came loaded with meaning for me.  Even more so, with a kaleidoscope, you have to constantly turn it, or move it in some way - the patterns are constantly changing. I think that is a good way to explain my pain; to attempt to visualise it - yet also the most difficult thing for someone to try to understand (including me).  It is forever shifting into different shapes and patterns without warning - I don't know what is coming next, but the patterns of pain are as bright and clear as the patterns created by a kaleidoscope.   Although they certainly don't feel as pretty.

“Words have no power to impress the mind without the exquisite horror of their reality.”
     ~ Edgar Allen Poe ~

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