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 ~

The stars make me dream...

I know nothing with any certainty, 

but the sight of the stars makes me dream.

- Van Gogh - 

Courage

www.pinterest.com/gmun22

A bit more serious...

Thinking more about chronic pain, because....... well, one, I opened that door and it's definitely something that deserves some attention and awareness; and two, because I HAVE IT!! Along with hundreds of thousands of people; around the world, probably millions of people.  Ususally I would actually go to Google and then cross reference a few searches to see if I can get a rough percentage, but I'll just stick with the 'I've read in multiple places it's a problem for millions of people' (You can fact check me if you wish!)

Drawing attention to chronic pain is an important issue.  Many people are living with some form of chronic pain, and will do so for the rest of their lives.  For some, pain is constant, for others it comes and goes.  If my treatment goes to plan, mine should improve massively, as the function of my shoulder improves, but it is unlikely I will ever be pain free.  However, if my pain drops below a level where I have to take crazy concoctions of strong medications and I get myself back where I can live a normal life, I will take that as a win.

I think it's important to draw attention to this quote, from a seminar/ conference (/can't quite remember which) on pain, last year, this was said:

I really think that last sentence is worth highlighting:

"We believe chronic pain is a disease in its own right."

I admit that I had absolutely no idea of the extent to which pain can affect the entire body. And it does - pain makes you tired, you ache, you struggle to concentrate on conversaation  as if you have a bad headache (you get them too); your body tries to compensate for the way you move, so other non-injured parts beging to hurt; you have to try to learn to correct that so you don't create further problems; the pain makes you tired, but you're too sore to get comfortable - sleep is broken (shoulder pain is actually one of the most common causes of insomnia) Or it swings entirely the opposite way, I hit a 14 on the scale below, and when I do le down to rest, my body just seems to wipe out.  It's such a strange thing to explain  -  I understand why it's so difficult to understand; but if you have a friend or family member with chronic pain, sometimes reading some of those usually really simple 'about......' articles make useful points.  And, as usual, I'm writing this to try to draw attention to another 'invisible illness' and maybe offer a glimpse into the complex world that is chronic pain ..... 

It is definitely not 'broken wrist, stick it in a cast' kind of pain; this is like saying Lyme disease makes you 'tired' as opposed to 'pathophysiologically fatigued' (the medical term; aalso used wwith ME/CFS/ Fibo and other similar illnesses -  not something a normal sleep helps in any way). Chronic pain and acute pain are not just different sides of a coin, they are completely different currencies.

 And really, as an, um, adventurous kid, I thought I knew it all - acute injuries: broken bones, pulled muscles, head/ neck injuries (gymnastics, flying over bike handles, falling out of trees.... and more - I was active!!); along with 'normal' pain from general minor illness.

 But that's the key word there  'A C U T E'  - chronic pain just isn't comparable.  It's not like having a sore arm/ shoulder/ tooth/ whatever.  It's not something you can compartmentalise.  After you have pain for a certain amount of time (medical definitions vary from 3 to 6 months), it changes the way the brain processes pain.  Sort of.  Because we don't really know that much more about pain.  Generally, the body should heal in that time  -  in my case, for example, I know my muscles were still detached 8 months later (right before they were reattached).  So then I had surgical pain (& the damage that goes with that)..... in an area that had been in severe (undiagnosed and untreated) pain for months.  Knowing what I know now about the actual physical damage as well as what I know about the little we really understand about chronic pain, it is not surprising that I have pain issues - add in my nerve damage, lack of function in my right shoulder; and other things that all came to light (I think it's pretty much covered across 2012- early 2015 on here!) -  my sister's cat could issue a chronic pain diagnosis if it could talk.

A solution on the other hand.....?...... Well, if we don't really understand how chronic pain works, it's pretty obvious to say we don't have a good solution for it. Slap on a fake smile, lipstick, and a pair of sunglasses (or a good mascara) with my meds, and nobody would know...... most of the time...... Bad days are harder to hide, but those also tend to be the days I just hide under my duvet, with little other choice..... this is far more than I ever really admit.

Recent happenings (details for another time, but not so good) have led doctors to offer me further medications and then more medications to mediate the side effects of that extra pain medication.  Right now, I have a drug combo that works the best out of anything I've tried.  It doesn't take the pain away  -  and nothing will.  It lets me cope with it, basically.  But I'm never not in pain.

This leads to a lot of judgment.....often from doctors who make comments like "you really don't want to be taking this many medications at your age....' (umm..... NO, I really don't.....) but after examination, history, and discussion conclude that they could "add more pain medication and give you another drug to help with side effects." So I declined.  The extra drugs won't get rid of my pain, so I'd really rather not add more toxins to my body - only to have the next doctor judge me for the even greater number of meds I take. *sigh*

One thing that gets me with this is the assumption you're 'out of it' with medication.  Most people's experience is after a surgery or following a bad injury - nothing long term; and for most people strong painkillers will make them either loopy or sleepy.  There's about 5% of people who have 'contrary reactions' to meds - guess what group I fall under?!...... Of course.  I have known this since I was 12 though (e.g. valium makes my insomnia worse, instead of knocking me out.  I would much prefer the sleep).  However what is difficult to understand for people is that my pain can make me seem 'out of it' - it has nothing to do with the meds. 

My sister once told me she "could tell when [ I ] had taken all my medication because I as a bit slow to think..."  Actually, she could tell when my pain was bad, because I take the same medication every day, at the same dose in order to try to keep my pain 'even' (rather than it spiking and dropping like a rollercoaster) - it sort of works.  Research has shown that in patients with chronic pain, pain medications act differently in the brain than in people using the drugs recreationally/ to 'get high'.  I know it's a misconception that bothers other people too. 

When people (and usually medical people) comment negatively on my meds, I think about what those meds enable me to do....  It's nothing like what I would like to be doing, but they enable me to get through my physiotherapy sessions.  They enable me to get out the house, have a shower  - basically to not lie crying in agony 24/7 until the pain just knocks me out.  That's where I was before the pain meds ere sort of balanced.  I imagine, sometimes, answering with, "would you ever make a cancer patient feel guilty about chemotherapy, a class of drugs that are known poisons, but the best you can offer?" - Because of course they wouldn't!!  Nobody would!  And the same should apply to all other patients too - those 'evil drugs' are the only things those same doctors can offer; it's all we've got.

 (As an aside  I think I actually HAVE also tried EVERY ''alterative therapy' I can find, and I do take a few supplements in order to actually avoid certain drugs, for specific things.  Laughably, the doctor who has just told me I shouldn't be taking so many prescriptions drugs, but offers me no alternative, then usually tells me the supplements are probably not doing anything.....)

*Arrrrrrrgh!! * Can you hear me scream?!

 So, yes, a little bit more serioius - but if you made it through that, and you know someone who suffers fom chronic pain, maybe you can ask them a little about it; or give them a (gentle!) hug - most people just want to be understood. :-)

Words have no power to impress the mind ithout the exquisite horror of their reality.

- Edgar Allen Poe - 

Positivity in honesty

My goal is positivity, but sometimes one of the best ways to be positive is to be completely honest with yourself and admit there are some days that just can't be dressed up with scented oils and rose petals; or concealer, hotpink lipstick, and sunglasses. There is pain that is untouchable and cannot be moved by any type of painkillers, pain creams, TENS units, pain patches, hot baths with muscle soaks, or even the slightly weird binaural beats that are actually helpful sometimes (and I've read the brain imaging science behind them.... I'm just not 100% sure YouTube and peer reviewed cognitive neuroscience journals have the same standards when it comes to binaural beats.  Although to be honest, if all they do is provide a kind of white noise-neuro-TENS-unit kind of thing, I don't really care.  In that moment.)

www.pinterest.com/gmun22

Sometimes you just have to wave the white flag, admit any attempt to function today is entirely futile and snuggle up with a dimmed computer screen and Netflix at a volume only dogs should be able to hear. 


The most important thing about these days -  which can be hard when you have been battling an illness for so long..... and especially hard because they often come in clusters.... or clusters of clusters!   For me, that's eleven and a half years of battle.  I've had higher points and I've had lower points - I'm really hoping for an upard climb soon (karma..... that would be really nice please!); but for some people it may be a few months, for others it may be lifelong - we all fight our own battles, and we will never truly understand someone else's battle.  Regardless of that, it's really important to remind yourself of this:

www.pinterest.com/gmun22

Because, let's be honest, you don't need to have a chronic illness or injury, or to be recovering from a surgery, or to have the flu to declare DUVET DAY. Sometimes we all just need a recharge, for whatever reason.  Personally, I think calling a duvet day after watching the news is a perfectly legitimate reason right now!!

Learn from yesterday,

Live for today,

Hope for tomorrow.

 - Einstein - 

Life's what you make it...

"It's not about the cards you're dealt, but how you play the hand." 

~ Randy Pausch ~

(I think this is paraphrased from Voltaire, but if you haven't read 'The Last Lecture' by Randy Pausch, it is a truly inspirational, positive book written by Pausch while he battled end-stage pancreatic cancer. He was writing for a lecture series where people renowned in different fields are asked to imagine what they would say if they were truly giving a last lecture. Pausch didn't have to imagine. But instead of writing about suffering; about all the things he was going to miss out on, he spoke of a full life where he achieved many of his dreams. It is a book I would highly recommend. So, sorry Voltaire, this version wins here - it's an incredibly moving piece of writing; its positivity - while still honest - is its true inspiration.)

Perseverance...

Perseverance.....  it's innate really!
Sometimes we just have to remind ourselves that as we get older.

From instagram

"Never

never

never

give 

up."

- Winston Churchill - 

Grow positive thoughts

 As I began to recover from Lyme disease, I decided I wanted a project I could work on, something different, something new.  Perhaps it wasn't conscious reasoning at the time, but I think doing something I'd never done before was important.  I couldn't compare the 'before' me to a reduced capability, slow working, inefficient 'new' me (or 'me in progress'.... perhaps). I chose to grow vegetables in containers. I researched, I joined a gardening forum (a PAID subscription forum..... no messing about here; I was going to LEARN & I was going to SUCCEED). 

I'm not sure why exactly I chose container gardening. I considered painting classes, or yoga classes, but I wasn't well enough to make any kind of time commitment,  especially to a course I'd paid for - my health was still very unpredictable (& my wallet not exactly overflowing with spare cash for classes I may or may not have been able to attend) - I needed something I could do at my pace. Container gardening, specifically, removed the physical barriers - I wasn't strong enough to dig, and it let me explore something new. And I discovered I LOVE it! 

THIS is totally true:

Below is an assortment of random photos of growing my own veggies (it quickly went from 'my' garden in the first year to 'our' garden in subsequent years. ... my mum loves it too! And grudgingly, I have to write it is (/she calls it!) her garden now, since I'm not there - but I have got to enjoy it at different stages, for different lengths of time since the year I started it!) 

Initially,  my dad seemed to find the whole thing hilarious, frequently laughing at my excitement when seeds successfully germinated,  and my baby plants began to grow.... then fruit..... Until the next spring when he said, rather hopefully, "so, are you going to grow those tomatoes again....?"

Mostly from year 1 - MY veggies!
But LOOK - we grew a pineapple  (took 2 years)!
Pepper seedlings, baby tomato plants, yellow tomato flower, aubergines (eggplants), baby courgette (zucchini), baby corn plants, cantaloupe melon, accidental zucchini /squash creation, mixed salad leaves, multicoloured carrots, "those [cherry] tomatoes", sugarsnap peas, PURPLE bell peppers, CORN!, PINEAPPLE!, beetroot  (beets) - quite a selection.... & we added more/ tried new things different years. 
SO rewarding, & OK, yes, I got excited! :-)

Research published relatively recently (last few years) that shows microbes in soil might actually affect our human 'microbiome'; and this may contribute to positive mood, and feelings of relaxation and contentment felt while gardening. So it was a GREAT choice of 'new hobby' - all round beneficial.... and those freshly picked veggies and herbs.... just can't beat them!!

"Adopt the pace of nature:

 her secret is patience."

~ Ralph Waldo Emerson ~

Strength

To quote my surgeon, who could not have been more right: 

"when it goes on this long, it becomes as much a mental challenge as a physical one."

...... and that was over three years ago. I hope that finish line comes into sight soon.

pinterest.com/gmun22

"The mind is everything. 
What you think you become."
~ Buddha ~

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 

July: Positive Affirmations

Today (July 1st), Facebook popped up with a 'memory' of this blogpost: 'Don't look back' - written exactly 4 years ago.

As always, it seems, Facebook has a knack for 'remembering' - & reminding me of - the passage of time with not entirely loved memories. It's hard to believe I wrote this post FOUR years ago; and that I fell FIVE years ago last week (yup, facebook reminded me of that too.....)

 I often think we are so very lucky we cannot see what lies ahead. I was so concerned with my 'lack of progress' in just 3 months; I wonder what that 'past me' would have thought if I had know what the following years would bring? Such an ongoing challenge.... bigger than I could ever have imagined: more surgery, the intense treatments, investigations,  ongoing severe pain, a resurgence of Lyme symptoms - on more than one occasion - the evil bacteria taking advantage of my weakened body.  And on top of 'just' the health issues, an array of other challenges, all indirectly caused because of this damn shoulder....


However, I shared that post again today,  because the message is as true and relevant now as it ever was. Perhaps even moreso in some ways..... 

"Don't look back, you are not going that way."  

It has been a tough journey, and that continues to be the case; often feeling tougher as more time passes. But the world IS still spinning, one day still follows the next, and although it is slower than I ever thought possible, I am still putting one foot in front of the other, and moving forward  (with maybe a few sidesteps included at times..... perhaps more than a few. .... and maybe add some cha-cha in there too!). However, it is most definitely a reminder of a very important life lesson - we have to keep going; to keep moving forward in order to make progress, however slow, and frustrating, it may be.

It's also a reminder I *really* should stop neglecting my blog! So, as I declared on Facebook today,  I am aiming to fill my blog with 'life lessons' posts for July, with a focus on positive philosophies. I certainly could do with searching for positivity just now and reminding myself I CAN DO THIS!!

So I'm going to kickoff my month of positivity by sharing this awesome music video by Rico Franchi, someone I am proud to call a friend because of LYME DISEASE - while I would never have chosen to have Lyme, I have met some amazing people because of it and I am truly grateful we all have each other -boosting each other up; helping each other out; understanding each other, because of (such an awful!) shared experience; and most importantly, working together toards the same goals: awareness, improved treatment, and ultimately: a cure.

Rico's positive affirmation, and the title of his single is

"I'm getting better every day"

It's available on iTunes and 50% of sales will go to Caudwell Lyme, a UK-based Lyme charity.
See Rico's details HERE on the Lyme Disease UK website and BUY his single, the first release from his album Auditory Dreams (fab name, right?!) for just 79p HERE - remember 50% of that goes to support a UK Lyme charity!

Way to start the month with some positivity - an optimistic, motivational song AND a charitable donation! Build that positive karma!


And remember......

"The journey of a thousand miles 

begins with a single step."

- Lao Tzu -

Invisible illnesses?

So..... first blog post in a while. Not the first time I've written that sentence. I'll get around to filling in the blanks, but for now I'm going to focus on the reason I started this blog (before the universe decided to try to prove I may have been a psychotic serial killer in a past life.  Hell, maybe I have a dozen past lives and I was a psychotic serial killer in them all...)  For now though, exhibit one:  LYME DISEASE.

As the name of my blog suggest, I did indeed start writing a personal blog with the intention of focusing lots on Lyme disease information and awareness.  And for anyone who has missed my Facebook or Instagram posting, or indeed the (wonderful) increased media coverage, May is global Lyme Disease awareness month.  I'll just stress that point:

 MAY IS LYME DISEASE AWARENESS MONTH!

Just to be clear. And I will get to that.  This may be my first post in a while, but if there is anything that I will battle my stressed, fatigued, and pain-addled brain to write about, it's Lyme disease awareness. (Yeah, 2016... not off to a good start.  A story for another day.)  There is LOTS going on in the world of Lyme disease this May. That means lots to talk about.

Today, I want to focus on something that began my own journey into the world of Lyme disease - my initial (mis)diagnosis of chronic fatigue syndrome.  You can read more about that in this post here: But you don't look sick or by reading My Lyme Story at the top of the page (part 2, well overdue).  

This past Thursday (12th May) was CFS/ME AWARENESS DAY (& now Fibromyalgia is included - there are so many similarities; cross diagnoses).

One key similarity is all 'diagnoses' fall into the category of invisible illnesses.  We are not obviously marked by what is wrong with us; and in many cases, our illnesses are not constant.  We have good days and bad days and sometimes, it is as confusing to us as to anyone else.  

Depression...... & all other 'invisible' illnesses
pinterest.com/gmun22

Except we can feel it.  And on the bad days, staring into a mirror with heavy eyes, grey skin and a strong idea of what we might look like when we are 90 (if we make it that long), it is like a stranger staring back at us.  We do not recognise that face in the mirror.  But we know we hate it.

pinterest.com/gmun22

 Norwegian CFS awareness group - Facebook page: 'Creating my Freedom: ME'd' created a wonderful short film for increasing awareness of CFS/ ME.  They use images of sufferers on good days and bad days, positioned side by side, showing that, in fact, maybe this 'invisible illness' is not quite as invisible as it seems.  People respond well to visual information.  For the most part, we understand the world by what we can see.  This is a powerful visual representation of how we present ourselves to the world, versus how we look on our bad days.


Please watch this short film, made by Josephine Rausand (from their Facebook page Creating my Freedom).  The only way I seem to be able to share the video is my OWN FACEBOOK POST - please click to view.  I will add a video if one becomes available.   

Here are a selection of stills from the video (but please, take the <4minutes to watch; the stills do not do the video justice:

                                                                                                                                                                                                                                                                                                                           
The comparisons show that 'invisible' illnesses are not really invisible; they appear invisible because we hide away. 

We hide away our weakest, most vulnerable view of ourselves. That person who stares back from the mirror bearing only a slight resemblance to the image in our heads. We do not hide away out of a vanity, or anything close. There is a need to shut the world out to protect ourselves; an instinct to cocoon ourselves, as sick animals do; it is a way to survive when we see no other way, and we have no medical support. It is self-preservation at its most raw. 

This shows it is not invisible. The few people who ever see us on our bad days are horrified,  shocked, surprised - usually they see us with our masks on.

pinterest.com/gmun22

And I am no exception. I hate having my photograph taken when I 'look ill' - but I have taken a few deliberately, planning to write something like this at some point..... 

Invisible illness?

Hopefully the reach of social media can help dispel the myth of invisible illness and increase understanding. It is not truly invisible, but sometimes, as with most severe illnesses, bed and rest are not even options, they are essential - what has been labelled invisible is more accurately described as hidden. 

"Learn from yesterday, live for today, hope for tomorrow." 

 - Einstein - 

Four years ago...

Four years ago on this day...

My first blog post of 2016 (actually my first post for quite a while) has been prompted by Facebook's 'see your memories' gadget that popped up on my feed earlier today.

I'm very aware this weekend marks 4 years since my first surgery. I have been mentally composing a post, ready to return to my neglected blog. It still feels like I need to recognise it - it's still not 'over' so there is still a rawness of sorts attached to the date. But today's caught me a little early, not quite off-guard, but not far from it. 

A lot has happened in the past few months that I haven't blogged about. I'm not even sure I know how to yet, but looking at my Facebook 'memories' today (did I mention I really hate that thing?! It seems programmed to pick the best *sarcasm* days to 'remind' me about....)

So.... 4 years ago today, these are my 'memories' - indelibly marked in my mind, but brought into glaring reality when staring out at me from my phone. Today, this is what I saw:

We were indeed in Lexington, Kentucky 12(ish) hours later, but little did I know what lay ahead... 

Sometimes, I think I am actually so very grateful for that blissful ignorance. There is so much we can cope with when we have to, I think definitely more than we can really imagine. When something big; something life-changing; something massively challenging happens, there are really two options - figure out how to deal with it, or don't. In other words, you beat it, or it beats you. 

That doesn't necessarily mean you can storm your way through life, stomping down every difficulty thrown at you as if you are superwoman; but it does mean you are in control of how you react to that challenge, looking at the bigger picture.  Dealing with it might still involve crying, screaming, yelling, sleeping, not sleeping -  generally struggling to figure things out; and 'figuring things out' doesn't necessarily involve a eureka moment, an epiphany that provides a working solution that you can just go with. Sometimes it means you just keep trying to figure things out, finding little solutions day by day until a big solution comes along.... or doesn't - sometimes day by day is the solution, and that doesn't mean you're losing, I have learned.  It pretty much means you're human.

(Official video courtesy of YouTube; not mine)

Reading back over that blogpost from 2012, it just feels so naive,  so unsuspecting of what was to come. I remember that feeling. It seemed like so long, from the previous June, and such a battle to actually get to that point - it was a battle!  I just had no idea how long the battle would last. I still don't.  But I genuinely was excited about the surgery. I genuinely thought it was going to fix everything. 

Then last year (apparently) I posted this, another link to this blog:

And it is still true. In a bittersweet way (the beauty of the words being the sweet part), this 'memory' is the one that stood out most. Not really to share on Facebook (hey, what an awesome time I was having a year ago.... because, really, that's supposed to be the point, isn't it? Facebook.... otherwise known as 'my perfect life'... surely we're all over that now?! We know better - right?!).  

Just the words.... they captured so perfectly how I felt, beaten and battered by things entirely outwith my control. Little did I know one year on, that list would have lengthened and I would still feel these words, as if they are living deep within me, flowing through me, as control remains nothing but an illusion; entirely out of my reach.

So, yeah, that all kind of hit me hard today. I was mentally preparing for the weekend - it's silly in a way, it was an arbitrary date, it really just marks another day passing, but at the same time, it does hold significance. I can think about that then.... 

But today, four years ago, we made our FIRST trip to Lexington, full of hope and optimism; and I guess, I need to search for that hope and optimism, and hope that somewhere deep inside, it hides, still there, ready to surface again. And I also need to remember I'm only human - and there are many ways to deal with challenges, and they're all ok, there are no magic solutions. 

 Hope is the thing with feathers 
That perches in the soul
And sings the tune without the words
And never stops at all
~ Emily Dickinson ~