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 ~

Let the light in....

Thought for today....

www.pinterest.com/gmun22

This makes me imagine people all sealed up, have never 'seen' anything in their lives; living inside a bubble of introverted darkness, never reading about the world, or interacting with others because they are too sealed off and too afraid to open themselves up for fear of getting hurt... of being 'broken' somehow.

Because the world does break us - we get ill, we get hurt - physically and emotionally. ... we make friends, we lose friends, we get our hearts broken,  we settle happily somewhere and then we move on.... everything is always changing, and we always need to adapt; to be constantly flexible... to take risks. And risks can break us too, but they can also be the most wonderful things that happen to us - if we never open ourselves up to risk, we don't really protect ourselves, we limit ourselves completely.  Whatever the result, all these things shape us, without them, we wouldn't develop friendships, fall in love, have adventures.... we wouldnt experience life in all its horror, and most essentially, in all its wonder.

We all have our cracks - challenges, stories, struggles, accomplishments - it's what makes us individual, what forms our personality; leaves indelible marks on our consciousness..... ultimately, it IS the story of our life... we get one chance to write the story, we should make the most of it.

I like this quote because it simplifies something I really feel about life, and particularly about being ill..... it has taught me more than I ever could have imagined. Do I hate it? Of course. But it happened, so I might as well find something positive instead of becoming bitter about it - we should embrace the things that shape us - every single thing we experience.  Look at things positively, learn from them; take it all in, and let it shine out.

*Not mine* - but not sure where I saved it from!

"Anyone who has never failed has never tried anything new."
~ Albert Einstein  ~I 

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

Happiness

Another gem from Pintrest... and I really hope it is true.

Sometimes, when I am being super-optimistic (or perhaps when I'm trying to make myself feel optimistic) , I focus on the benefits.  It strange to think there are benefits that come of out being ill, and/ or dealing with a horrendous injury (or with anything else that completely and totally turns your life upside down) but focusing on these is a positive thing to do - to accept that there are certain things that are different because of my illness.  For example,  I will never take my health for granted; it means I will always appreciate my family, more than I thought imaginable; I have learned that I some very special friends who have stuck by me through the very worst times; it means I have had time to truly think about what I want out of life and how I want to get there; and over and above everything else: I want to be happy. So I have a goal, a challenge, something to work towards.  And if John Lennon understood that when he was five, he truly was a genius!

“Live the life you've dreamed”

  ~ Henry David Thoreau