2016: Lost for words

Lost for words
[Originally written on my phone & full of typos *shock*. Edited early 2017, with additional content.]

Yes! You read it properly (twice, just to be clear)! I have not been very good at blogging this year - specifically for 16 months, really, because life became so jumbled up & messy, I genuinely couldn't (can't) find the words to describe it all.

Anyone who knows me personally, or who has followed my blog may be having some doubts right now... I am not one to be stuck for words. Ever.  And I'm not a fan of being stuck for words - so this ends now!  For once I am making a 'real' new year's resolution to focus on my writing (blogging included obviously; but all my writing projects); and art projects in 2017 - a year of creativity.  Art heals, right?!

However, as December is quickly passing by, and a new year approaches, I feel this urge to try to 'get it all out' - out of my head, free to float around in cyberspace instead of in my own mind - so I can move forward and approach 2017 with a sense of optimism and hope.

To 'get what all out'? My subconscious asks me - all that stuff you just said you have no words for? Well.... yes. I haven't figured out how that will work: if the words need to be written, or if I can simply THINK stuff out of my head. Either way,  I'm trying. Perhaps simply starting to write will draw it out of me, either tangibly (or maybe through some sort of intangible higher-consciousness superpower that writing, blogging and thinking can combine and combust when I try to put certain memories into words.... it's a cool idea - what a great way to eliminate trauma, or negativity... okay, I think I've watched too much Black Mirror.  I do know that's not really going to happen - it's been a hard year, but I've not totally lost it; my imagination remains happily, crazily intact though!)  Moving on.....  in the real world outside my head.... perhaps I will find the words; or perhaps writing about different things will provide a release anyway.  Really, I just need to clear some space in my head for positive thoughts for next year. I don't exactly know how (did you guess?!).... I'm just diving in anyway.

This particular blog post started on instagram, in a blurb about a painting I posted. I have been attempting a 'challenge': 100 days of creativity.  I  did it last year, and it was great ambidextrous therapy, following right shoulder and left wrist surgeries, so - with the same underlying physical reasons, and the whole art therapy idea, i started it again in April this year, but things just continue to overwhelm me.

January 2017 will mark 12 years of severe chronic illness (& injury) for me. Out of 12 years, i can honestly say this year has been the worst. It should have been a year where improvements continued; instead, improvements seem to have crumbled, despite my best efforts to continue building on them; my Lyme-related issues have firmly nosedived into major relapses; and my strength and emotional well-being seems to have been tested at every point. It has been a TOUGH year, and it remains difficult to delve into every detail.


I gave up on this art  challenge after spending quite a bit of time in hospital in the summer, and even longer being 'iller' than usual between my stays in hospital. It's just one point that leaves me stuck for words, because after about 3 months of feeling severely ill (on top of my 'normal feeling like sh!t), a total of 21 nights spent in hospital, over multiple admissions;
 I have no answers. Symptoms have somewhat calmed down, but flare up sporadically.  I still feel ill again; 'it' has not been fixed, 'it' has not gone away, but I have given up on  answers for now.

I later I decided to finish this art challenge. It might seem silly, but it has come to represent something bigger; it may be my only 'accomplishment' this year (although survival probably surpasses it!). So I have 22 days and 28 pieces to post 😞.... but in a silly way, it represents my year. So I WILL finish! & if I can squeeze that in, hopefully in some crazy way it will help me leave 2016 behind & move on to 2017 looking forward. 

There is a large part of this that I feel mirrors 2016 globally too and hopefully the world can move on in a positive way too. Hopefully instead of divisiveness that dominated 2016, humanity can come together & support one another. Hopefully 2017 can be a year filled with compassion, love, safety & unity (& good karma!) This safetypin movement -inspired painting seemed the perfect place for trying to start somewhere (again!) with my blog.

Initially I started this blog to raise awareness about Lyme Disease;  it quickly became an unexpected method of communication - somewhere I could upate friends about my shoulder,  as I was not allowed to spend much time online following surgery. Over time it became quite cathartic as well, at times an outlet for a frustrating long recovery, and many times a place for positive quotes to self-motivate.  It has helped me stay positive & optimistic - and enables me to 'meet' other people with shared experiences. 

I very much hope I can get back to writing and continue all of those things in the new year.

Multicolored Safety-pin
#safetypinmovement

"You must be the change you want to see in the world."

~ Gandhi ~

Optimistic eyes

I've missed a couple of days... partly because I have stuck to my painkillers + energy drinks (+ sheer stubbornness) = ability to do things and go places; and partly because 2 days of that meant I slept all day yesterday.

Today was a beautiful day - the kind of winter's day I really love here: cold, but with a bright blue sky and the sun shining.  Mum and I went out a walk.  Or, as she calls it, at my pace, a stroll (definitely more accurate).  It's the first time I've been out a walk for several months and we did walk slowly, but an estimated ~2 miles in total.  A two mile stroll is a major achievement for me - and focusing on the little achievements (anything that makes us smile!) is important, when life becomes 'step-by-step' or 'day-by-day'.

It wasn't an easy walk for me - and it really was at snail's pace, with some rests and pauses - but the fresh air felt really good.  We did a circuit around our neighbourhood, and then continued and did another one across the main road, and back home.  It's amazing how natural it is for our bodies to adapt in ways we don't even think about.... until we can't do it - only then do we realise how much of an effort we make, entirely unconsciously, walking up and down little slopes or hills.  I know walking uphill (I'm talking a slight incline here - nothing major) is hard, and I know it requires rests because it makes breathing more painful and my 'stuck' rib cage attempts to expand further so my lung can expand, and it can't.  I know to stop, take some breaths (sometimes hunched over) and then I can go on - but it is much more reassuring to walk with someone beside me, just in case.  I hate saying that, but unfortunately, right now, it's very true. (Even more unfortunately, also justified.)

However, today I learned that going down a steep hill is harder than going up one! (Even a tiny, short one, it's the incline that tortures!)  It came to one of those points where my brain knew what to do, and my body didn't.  If these didn't hurt so much, they would be almost funny... describing them is quite difficult.  I've tried to explain it by suggesting to someone: imagine doing a somersault (I was speaking to someone who couldn't somersault) -  you know the motion, the movement and the shape, but you can't just do a somersault.  A better example would actually be to imagine what it feels like to do a somersault underwater (everyone's done that, right?  Is it only me who thinks that's incredibly normal...?) - you can't hurt yourself underwater, it's fun, easy, and anyone can try it - but you can't just transfer that to a gym (or a park) even if you know what it feels like.  It's not the best example, but it's the closest I've come to feeling like the person I'm talking to might, possibly, be able to imagine what I mean...  Except that I'm talking about something really simple - walking down a hill - which shouldn't really be comparable to a learned skill like a somersault.  But it is.  As strange as it sounds - and it felt stranger! - my body didn't know how to walk down a hill.

Everyone knows when you have an injury, often another part of your body compensates for a while until the injury heals.  Quite often, we're not really aware of it until the other part of the body that's doing more work begins to niggle too.  This was like that, except I was slapped in the face with it - my body's 'compensation attempts' failed miserably.  To go down a hill, we naturally lean backwards to distribute our weight and walk without losing balance.  My muscles don't have the strength to do that (plus it hurts so much that they start to spasm - it's not a case of just sucking it up and dealing with an achy muscle type of pain; it's more of a black-sparkles-dizzy-nauseating-blackness inducing pain).  My brain seemed to be trying all sorts of ways - my right foot on tiptoe (didn't work); twisting my hips (didn't work); various ways of limping (I really never knew there were so many) - I actually stopped and had to think: how can I do this?  Ridiculous! It wasn't a big hill, we were nearly home, so I let the weird twisty-tip-toed-limping movement take over and got to the bottom of the slope as the black sparkling darkness really was descending.  After refusing to take my Mum's arm for the hill, I clutched at her for the last minute until we got across the road and to the front door and I could lie flat on my back on the sofa.

I'm counting that as a win......

http://www.pinterest.com/gmun22/inspirations-for-life/

New Year

I have neglected my blog a bit over the last few months, but I plan to start writing much more regularly again.  Last January my song-a-day project really helped me through a rather bleak time of year, so although it may be a bit last minute, I am hoping to come up with something that I can write about this January too.

In the meantime, I would like to pass on a sentiment stolen from a friend's facebook page:

I could get all philosophical and argue that every tomorrow can be the first blank page of a new future, or a new journey, but of course it is especially at this time of year we think about it.  So to all my friends, both online and in 'real life', I wish you a good life story in 2014. 

Let's look forward with optimism:

“Dwell in possibility.”    ~ Emily Dickinson

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

Optimism vs. Realism

I feel as if I'm in a bit of a slump.  I had ONE really good day about 10 days ago, about the best I've had since my surgery - my cold felt like it had finally lifted, so my head felt a bit clearer, my pain wasn't really much improved but I didn't have any 'surges' of intense pain that day and, even although I was consciously terrified to think it, I did wonder if perhaps I was turning a corner; taking another step up.  Then reality slapped me in the face again and my pain seemed to increase... again... and along with that just comes this sheer exhaustion which I honestly feel seems worse the longer my pain goes on.

I attempted to power through last week - Feldenkrais, physio, a few hours out with my Mum and by Thursday my body pretty much said, no more, I'm done, and I slept for 21 out of 24 hours.  That's a record, even for me.

Sometimes - afterwards - I almost hate those good days. It's like a little hint of what could be... and then it disappears again... honestly, it just feels unfair.  And I do try my very best not to moan and complain because it's not helpful, it doesn't actually achieve anything; there are many people who have far worse things to deal with than I do; plus people who do complain all the time drive me mad.  And I think - for anyone going through anything - a positive attitude is essential, simply for staying sane... but sometimes... well, let's face it, everyone's thought it at some point: life just isn't fair.

BUT every now and then, getting it all out is good for my sanity too....!

I know this is still a long process, and I know I still have a long way to go, and I know nothing is magically going to get better overnight; I'm not simply going to wake up, have a good day and everything is going to magically disappear... I do know all that. But somehow, every good day just brings with it a little whisper of hope, a wish that this really will be the beginning of every day being a better day; and I think that is why the bad day that follows feels even worse.  It's not just a bad day, it's optimism colliding with realism at the speed of light. Crash.

Luckily, optimism is pretty resilient and lives for another (good) day.  Even if it takes a few days to pull itself together again...

So, to give that optimism a little boost, I've decided to challenge myself again to find some inspirational posters (yes, I've been spending a lot of time on Pintrest again...) for some positive reinforcement...

Agreed.

From My Pintrest Board