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

Friday, May 3, 2013

Back on the rollercoaster

Well, after my great progress over the past couple of weeks, last weekend was definitely a low point again - the equivalent of making that slow, anticipatory climb right before the rollercoaster sends you racing back down to earth... twisting, backwards, and upside down.  Hopefully, to soon begin another slow climb...

Last Saturday night I was doing my exercises - as usual - before I went to bed. My sleep patterns are so mixed up right now  and my doctor just says sleep when I can, so I do, with not much other choice - I've even given up on the sleeping tablets at the moment as they are simply not working anymore.  So, I'd had a shower - warmed my muscles up - got ready for bed around midnight and started on the exercises I've been doing for the past couple of weeks.

I worked through my 'easy' ones first, leaving the harder ones until the end - my usual routine; it loosens up my movements and addresses my range-of-motion exercises and then I do my (minimal) strength exercises after that.  During my baby-girly-press-ups I felt a bit of a twinge on the top of my shoulder - not where I usually get pain, so I took a break  (this usually involves me on my knees, pulling my arm in tight to my body, and head on the floor - this is not uncommon) and then decided to give the next exercise a go.  The pain didn't seem to be easing really, but because it wasn't my usual 'hotspots' of pain I tried to work through it a bit.  The next two exercises have me on my hands and knees - gave it one shot and decided that wasn't going to happen either.  It's been a while since I've had to give up on my exercises, and I am always aware of making the decision - trying really hard to decide if it is actually better to push through, or to give up.  And I hate giving up.  It's really not in my nature.  However, my body was beginning to dictate so I grudgingly decided it was the right thing to do.

As the pain was increasing though, the one thought running round my spinning head, as I lay face down on the floor was: I hope I can still move my arm.  I have to check. I have to lift it.  Just to check....  So I thought really hard about it and realised that even my left arm felt like a tonne weight - it is so difficult to describe what pain can do... I would say I've experienced pain in my life - broken ribs, fractured sternum, fractured wrist, fractured thumb (among others - mostly gymnastic-related); but not forgetting the infinite list of Lyme symptoms associated with pain...  But what I have now really should have its own word.  It's like saying you're "tired" when you have Lyme (or anything that causes major medical fatigue... like chronic pain), when what you really mean is "I feel like some vampire-type creature who feeds on energy instead of blood has emptied my body and left me devoid of any iota of energy."  

There's just not really a word for it. "Pain" simply isn't enough.

Still determined to make sure I hadn't done any major damage (aaarrrrgghhhh!!) and could still move my arm I lay on my stomach (where I had pretty much collapsed anyway) and reverted to my previous progression - pushing my arms up with my fingertips - still lifting them; still using the muscles, but with some support.  I struggled, but I managed.  Relieved, I pushed up one more time, just to be sure and then it really HIT me. $%^# !! The pain from the muscles' contractions seared down the lateral (right) side of my scapula and radiated deep into my body between my scapula and my thorax.  The pain was like a stone smashing a pane of glass - it just seemed to splinter instantaneously, and simultaneously, in every direction.  

I lay on the ground, my arm bent and tucked in at my side - my protective position - and waited for the pain to subside.  I'm really not sure how long I lay there; I reckon it was about 20-30 minutes but my pain was not calming down, it was definitely getting worse.  At some point, I realised I needed ice, but given I was lying face down with my eyes closed and the room still spinning; feeling so nauseated I could taste it; and was completely drenched in sweat caused by the pain; I did realise going downstairs was not an option.  I had to wake my parents.

For the first time since the two weeks immediately after my surgery, I woke my parents around 1am.  I half-crawled, half-clutched at the walls, got to their bedroom door and struggled to make my voice loud enough to wake them.

By the time they got to me I was sitting on the wee sofa at the bottom of my bed, holding my arm - it felt like I was holding it so it wouldn't fall off.  By this point, my pain was beyond words.  I was sobbing, sweat was literally dripping down my face and upper body and speaking to explain what had happened was a struggle.

My Dad filled my ice machine and hot water bottle for me and my Mum sat with me trying to get me to control my breathing - seemingly impossible.  She got me the meds that would help, applied the prescription pain cream I've just got and helped me up on to my jelly legs and into  bed.  She sat with me for about an hour, calming me down.  It took a long time to stop sobbing, and to breathe normally.  My arm felt 'odd' - as if it wasn't really connected to my body properly.  She did some reiki on my arm and on my head, and eventually the drugs worked, my breathing became steadier, and I did begin to relax.

It all sounds so ridiculous, so dramatic and so difficult to understand why I couldn't control it.  I have learned this year that these are all parasympathetic responses to pain - something I'm not in control of, no matter how hard I try to fight it:  it's my brain's reaction to my body's pain.

The next day I was very sore and absolutely exhausted from it all.  Again, it sounds silly to say my body had been through a trauma, but again, that's what's been explained to me.  When they say someone is treated for "shock" at the scene of an accident - it's a genuine physical response to a traumatic event - not something we can control (despite my best efforts this year).  We had friends coming for lunch the next day.  I managed to get dressed - sweatpants and a T-shirt, but it was a step up from my PJs.  I even managed to put a little bronzer and blusher on the grey face staring back at me from the mirror.  Despite that, when our friends arrived, he took one look at me and said, "you don't look too good" - and I looked better than I felt!

It took me a few days to get over that exhausted, physical-trauma feeling and for my pain levels to calm down a little.  I'm still not 'over it' and am hoping it is a blip more than a set back.

My physio thinks that it is likely I broke up some scar tissue with the movement I did.  Why with the same exercises I've been doing?  No idea.  He has been using ultrasound again for a few weeks, and I am taking a supplement (called Lumbrokinase) that is supposed to help with scar tissue; it's possible these things are working and the scar tissue has been weakened and as a result ripped apart.  In the long term, this is a good thing - I need my scar tissue broken up to 'unstick' my frozen scapula, but ultimately it is still tissue ripping apart inside me, and, yes, that hurts much as you'd imagine!  It can cause severe pain - although my reaction was extreme, even for that, apparently.... however, it was pointed out to me that nothing in all of this has been 'normal' - it really doesn't even have a precedent.  It still always raises the question of RSD, or "RSD-type pain" as my therapists prefer (as do I).

In addition, there seem to be some nerve-related issues going on, whether that was also a cause, or is a consequence is unclear.  My right hand burns and has numb patches.  My right arm feels not quite attached to my body - it is a strange sensation, difficult to explain. On Monday at physio, Angelo took measurements as my upper arm was quite swollen. Where it should be atrophied and skinny from lack of use, it still measures 1cm-2cm thicker than my left (good) arm at the same points. I have a compression bandage on my entire right arm now to see if that can help with any fluid or oedema.  It does help ease the burning most of the time.

So right now I am back to the simple ROM movements again, not too much stress on my shoulder and giving my body some time to recover.  Frustrating doesn't even begin to cover  it.

I did try some of the strength exercises under supervision at my physio appointment today, but I couldn't do them all and I didn't feel good.  By the time I'd walked from the clinic to the car, and my Mum had driven (almost) out of the car park, I had to ask her to park again to let my anti-nausea tablet work, as I had jelly legs again and felt like I could be sick from the car moving. (I was able to take enough meds to help things ease off, and we still went for pedicures as planned - something enjoyable and relaxing anyway... and happy pink summery toes now it is flip flop weather!!)

On the positive side, although I seem weaker than before, testing my muscles has shown that I have not done any major damage - my movements are still all there, and my 'new' muscles are still working (except lifting my arm - it is still too painful to have it lifted passively, so no active lifting right now either) and the actual surgical repair is still looking good - a big relief.

The question remains though: why do I still have so much pain on the lateral side?  And why is my pain response still so severe? These have been the main questions for months now - and the answers are still elusive.... and I still feel every week seems to bring more questions.

Which leads me to some wise words from my favourite genius:

“The important thing is not to stop questioning. Curiosity has its own reason for existing.”
  ~ Albert Einstein