Inspiration

Unfortunately last night's little 'incident' has ramped my pain back up again so today when my alarm went off and the pain came into focus, I took my tablets and went back to sleep.  Then just alternated between ice and heat for the rest of the day.  It's not the worst pain I've had, (although when I try to reason this out with anyone medical, they always tell me pain is subjective, in that moment - e.g. - don't compare it to the day after surgery; think about right now), but it's so inhibiting. When it was my ankle I could stick a support on it, use crutches and get on with things; my wrist - a cast and/ or sling and pretty much the same. But it's all-consuming pain, it frustrates me to no end that I can't just over-ride it...... and that usually leads to a 'pain happens for a reason, listen to your body' conversation which, unfortunately, is always right. I just feel like a stuck record saying I wish I could just do a hundred exercises a day instead of all this resting.


It's difficult to explain to people.  I look ok - most of the time, when I don't, I generally am not seen by other people, or I do this:

From Pinterest

....and add a cocktail of meds, energy drinks and any form of caffeine available to the makeup.


On days like today, when resting is the only option (that doesn't really make it an option, more of an order - and that's what it feels like: an order issued by my body!), I reflect on things, so my tea bag tag of the day: "inspiration is an unlimited power" seems like a good choice.

And I found lots of inspirational quotes and images on Pinterest, and enjoyed looking through my other ones, but my biggest inspiration today came from somewhere else.  Today I did something I haven't done for a while and Googled "scapular muscle reattachment surgery".  I used to search now and then, wondering if I'd find anyone else writing about it and today I did.  (I also found out that Dr Kibler and Aaron have had a major article about the surgery published in this month's issue of the Journal of Shoulder and Elbow surgery, but it deserves its own post - for another day).

I came across a blog of another story of scapular muscle reattachment surgery called: My Impossible Medical Journey which is truly inspiring. The author, Megan, has had MANY surgeries, including work by Dr K, including scapular muscle reattachment, but she has many more surgeries to face as she has lots of other issues going along with those - all written about on her blog (the name links to it).

I also came across Elizabeth's Shoulder Updates - another story of scapular reattachment surgery, which seems to be a really successful (although long in terms of her injury) story.

Both blogs are inspirational in different ways; and written by truly strong, determined people.  And of course they both make me reflect on my experience too.  It's really interesting to read about other people's experiences.

 

Both these girls are writing blogs that are sharing so much information and inspiring others.  Hopefully there are other people out there that will find the information helpful - but the three blogs (including mine here now)  illustrate how different everyone's story is - so I wanted to share these blogs because I think they are inspirational, and also because it might help other people by allowing them to compare different experiences.  Like everything else, everyone who has this surgery (or any major life or health issue/ challenge to deal with) has it for an individual reason, and recovers in their own way, and then that fits in with all the associated issues that have also been shown to be highly individual - as more people share their experiences, hopefully others can see where they fit in too.

“Each player must accept the cards life deals him or her: but once they are in hand, he or she alone must decide how to play the cards in order to win the game.”

   ~ Voltaire

Frustrating little thing called patience

Today this happened:

My first thought: it bloody well better...

(Clearly I am still learning about the concept of patience...)

Then I got into bed, ready to write this blog post, moved about a millimetre to adjust my pillow and BAM! Excruciating pain.  A pain I have come to identify as scar tissue breaking up. So................. just more tissue ripping apart inside my body again......... followed by the initial, and futile, lip-biting attempts to quash the reaction to the increasing pain.... groaning and sweating; quickly joined by the realisation the burning in my eyes and cheeks are hot tears; then the realisation I'm holding my breath because breathing hurts too much............ knowing certain positions are (moderately) helpful, I painfully ease myself into the weight-off-the-scapula-arm-compressing-pillow-hug that offers the most relief while I wait out the worst of the pain until I can move again.  Luckily I had just taken my bedtime dose of tablets (although I don't think they're working very well) and I thought it didn't take too long this time, but as I look at the clock on my computer while I type this (with only my left hand; my right arm is following the now-well-defined pattern and has gone numb) I realise that all took about an hour. 

 It's not really a good thing that I have come to accept this as 'normal' - "are you sweating?" my new (and also old, just 'new right now') flatmate asked me with a little ring of panic in her voice, during one of these pain episodes.... "doctor? hospital?.... what can I do?... tea??"  (Yes, V, if you're reading this, you're awesome.  And if you're not, now I'll know because you won't let that compliment pass unnoticed ;-).  Seriously though, she is a fantastic friend.  And has realised that tea is pretty much the solution to everything - I guess a good inspiration for my January blog in many ways!) So - yes please, the logical choice - tea (and ice/heat and muscle relaxants) as I attempt to assure her this is ok; this is 'normal'.  Her face usually says "well here's the tea, but I don't believe you."

She's probably right.

But right now?? Now that I'm repositioned, wrapped in my heated blanket and able to breathe again...?? Now?! Now I'm thinking: patience??! Seriously!? Either I really needed a reminder (which I can assure you, I didn't; 'normal' pain is enough of a daily - hourly, minute-ly reminder -  this is going nowhere fast, and patience, although not my strong point, is a necessity); or perhaps the universe has some sick sense of humour.  Actually, I wonder if someone somewhere has a voodoo doll of me........

Here I was, all ready to write about journeys and individuality and how annoying cliches such as 'Patience pays' and 'time heals' really are true... Even if we all hate them when someone says them to us (yet have probably also said them to others) - because the irritating thing about cliches is they are cliches for a reason.  A little writing, a few inspirational pictures I found on Pinterest (where else?!) and that was my blog-plan.  I should have been done, dusted and asleep by now (or at the very least, battling my insomnia...).  Instead I'm wishing I was in Colorado right now and could see if some newly allowed self-medication was any good for this pain....

Since I'm not in Colorado, I guess I'll resort back to the philosophical inspirations...

Realistically, being really pedantic, your world can fall apart in a day, or in an instant; I think it takes more than ten times as long... but we all do it - all the time, in our own ways.  So I think the point is we can put ourselves back together - with time, and some patience; and all in our own time.  

...............

  

 For me, those kind of sentiments are why some well-intended words, such as 'patience pays' - can feel both inspirational, calming, and frustrating all at the same time.  We are all on our own journeys, dealing with our own struggles, some are little obstacle that just get in the way; others create journeys that make daily life seem like an infinite Tough Mudder challenge. 


So it's always good to remind yourself of the little steps you have taken:

And, perhaps most importantly, never compare your story to someone else's.

“We are all in the gutter, but some of us are looking at the stars.”

    ~ Oscar Wilde

Peace, tranquility & harmony

Today's teabag is something we all crave (well I certainly do!).  It's something that we should all make time for - even for just a moment, to sit, relax and contemplate everything and nothing all at once.   It seems perfectly accompanied by some soothing photos and few words. Have a peaceful day :-)

http://www.yogiproducts.com

Things that bring me peace, tranquility & harmony:

One of my favourite pieces of art - my Dad brought it back from Barcelona for me a few years ago, and it is framed in my bedroom where I can lie in bed and lose myself in it, imagining the beautiful absurdity of playing a grand piano in a hay field.

Memories of perhaps the most peaceful, tranquil place I have been: 

Seven Mile Beach on Grand Cayman

The idea we are just tiny specks of stardust, floating around the universe, temporarily inhabiting a conscious body.  This reminds me of one of my favourite books, 'Sophie's World' by Jostein Gaarder - at one point he writes, "We are all made of star dust." This thought soothes me, and this image illustrates the idea perfectly.

What brings you peace, tranquility & harmony?  It's the weekend.... take a moment.....

“It's not what you look at that matters, it's what you see.”

  ~ Henry David Thoreau

Butterfly dreams

This wasn't even planned.... today I put a tea bag into my favourite mug and it was like insta-blog:

I actually feel I could leave it at that - one picture worth a thousand words, but most people who know me will know I am more of a 'why use one word when ten will do' kind of person.

I first learned of the quote on the mug a few years ago, after my diagnosis of Lyme disease -  actually almost 6 years ago now.  Not long after that, my Dad's job took us from Florida to Pennsylvania where everyone knows what Lyme is, I found the best doctor in the world (I stand by that claim - in all possible ways)  and began my treatment.  The idea of a caterpillar thinking its life is over and then becoming a butterfly fit perfectly.  Perhaps things didn't exactly follow the expected path from there, but it's still an optimistic quote worth holding onto - something beautiful can come out of even the lowest points in life - but we have to work for them (just like the caterpillar builds its cocoon!).

Having dream on my teabag today seemed perfectly fitting.  It goes with the aspirations of finally becoming a butterfly (just to draw out the metaphor as much as I possibly can), but it reminds me that it's the most important thing to do.  Dreams, hope - it's what keeps people going.

I've had several doctors and therapists tell me that my shoulder will never be normal again. (Some more bluntly than others.)  I appreciate their honesty - they genuinely don't know, because they've never dealt with this combination before, so I would much rather they are honest than pretend they know all the answers.  (The ones who did that caused me far more harm, way back in the early stages.) Nobody knows how much use I'll get back in my right shoulder/arm/hand; or how much (or if) my pain will improve and how long that could take.  They have different guesses, but the conversations usually go something like this:

Dr: I'm sure if you get back 70% function you can live a normal life and you'll be happy with that
Me: But if I can work hard and get to 70%, surely I can just work hard for longer and get something better....?
Dr: Well.........
Me: *staring expectantly*
Dr: Sometimes it happens...... *trails off*

(Just for some perspective: my last evaluation, I was at 20% function - it took me 12 months to go from 15% to 20%.  I should have that evaluation done again this month. I think I've improved, but the last couple of times I've answered the questions, I feel better for the first 4 questions - yes, I can now turn on a tap 'with difficulty' and put on sunglasses 'with difficulty' instead of not at all... YES!!, I think, finally I'm not just circling 'I can't do this'' 'I can't do this'' 'I can't do this'; 'I can't do this'; 'I can't do this'......... then it moves on 'can you sleep on your affected side?'; 'can you reach up to the middle of your back/ undo your bra with your affected arm?'; 'can you reach a shelf at shoulder height with a straight arm?'; ' can you put a gallon of milk on a shelf at shoulder height with a straight arm?'; 'can you play tennis?' etc. etc. and it's back to  'I can't do this'' 'I can't do this'' 'I can't do this'; 'I can't do this'; 'I can't do this'............ I have to have improved a LITTLE....)

I learned in November 2012, after it took me 9 months to re-learn how to shrug my shoulder that I had done something none of my doctors knew whether to expect or not.  They didn't know if the neuromuscular connections were going to re-form after such a long period of detachment, and all the atrophy that goes with that.  But I worked damn hard on those shoulder shrugs, and as far as I am concerned, I can work damn hard on everything else too.... when I'm allowed...

I don't have unrealistic expectations (well..... maybe saying I know they're (slightly) unrealistic would be more accurate.... I do have expectations, I know they might not happen); I know if I do achieve certain things, it will be against the odds, and it will take a lot of hard work - and it won't happen any time soon.   I know that I can't even do the hard work until the nerves heal, which is estimated at 2(ish) years.  But it doesn't mean I will stop dreaming and stop trying and stop hoping as I do the tiny exercises I can do just now - which I think I am getting better at....

Definitely improving on my first attempts.... several weeks ago, my Scottish physio tried to get me to do a new exercise.  He demonstrated - stood in front of my, barely hunched over and swung his arms in a rhythm, into the middle, out to the side, crossing them in the middle, across the body. Ok, easy.  He went behind me to watch my scapular movement as I did the exercise.  I tried reeeeeeeeeeeeeeeeeeeeeeeaaaallllllllllyyyy hard to make my right arm swing.  Nothing. (This still surprises me.)  He walked in front of me again, showed me the exercise again. Ok, yup, I know.  Walked around me again to watch my scapulae. Go.  I tried.  Nothing.  The left one was just swinging kind of oddly, as my brain attempted to make the right one mimic it, but I obviously hadn't tried that since my surgery. 'New' movement: doesn't work. My brain couldn't make my arm do the movement - this is the weirdest feeling ever, I really struggle to describe it.  My physio, a powerful motivator and someone who will work you with an appropriate mix of compassion + professional coach (/ slave driver in my athletic past - he is way too nice to me these days!) stood in front of me again.  "What exactly is the problem here?" he asked.  I showed him my pitiful attempt to swing my arm (which incidentally was also pretty sore and kind of felt like my hanging, disconnected arm might just drop to the ground out of its socket if my skin wasn't there... although my pride was hurting more I think).  I don't think he knew whether to laugh or feel sorry for me. (He chuckled, halfheartedly - I think if there's such a thing as a sympathetic chuckle, that's what I got.)

He stood in front of me told me to stand up straight and mirror him.  Eventually, my arm got a bit of rhythm - albeit a little awkward.   Now hunch slightly, is that more painful? Yes, but I'm ok (as the room filled with white sparkles - I can ignore them, it's the black sparkles that mean STOP... generally physios and doctors disagree, but it works for me - I have to move SOMETHING).  Again, he stood in front of me and I watched him as I swung my arms, still awkwardly, but at least moving this time.  He went behind me and looked at my scapula. "Useless," he said, "it's not moving."

Awesome.

And back to the quote, with a final 'new' exercise, also a few weeks ago. Standing very close to, and facing the door with my palms against the door at a comfortable height (around level with my chest), shoulder width apart, he told me to move up and down in tiny movements - a couple of centimetres, no more.  He stood behind me, watching my scapulae. Try it with wider arms. Same.  Smaller movements. Arms back closer together. Wider again. Tiny movements. Make them smaller.  Arms together.  Arms wider.... "What exactly are you thinking about right now?" he asked me. "I'm imagining I'm a butterfly, my left scapula is a wing and my right one's trying to do the same thing," I spat out, frustrated and exasperated. "Good," he said, "keep thinking like that."

Listen to the whispers

Double posting...... since I write better at night (or rather in the middle of the night), I'm attempting to make my dates match up!

Tonight my teabag said:

http://www.yogiproducts.com

When I did  some searching using the words, I found this:

I loved The Land Before Time film when I was wee, although I remember it as a sad story - but this is a perfect sentiment, to me these both really mean to listen to your body - your heart, soul, gut.... whatever you want to call it, it means don't let your head and your thoughts dominate if your body is telling you otherwise.

Over the last few months, my shoulder has been treated by a different physio - my physio at home in Scotland, who treated me for just about every injury I ever had when I did gymnastics, and who my Dad claims is the best physio he ever had, as a professional sportsman.  He's an excellent physiotherapist, another person I feel lucky to have treating me (I'm not sure he feels the same...!).  I'm not going into all the details today, but we've been doing things a bit differently.

(He did spend the first few weeks telling me I had "blown his brains"; that he "couldn't even visualise a fully detached trapezius" - he can usually visualise EVERYTHING - it's like he peels back your skin with his eyes and can see how all the muscles and tissue fit together and work together under the skin - an amazing talent; he also told me that "any therapist who sees you coming should run fast in the opposite direction"..... and some more, I think those were the highlights!)

It was interesting for me to re-live all the discovery through someone else's eyes again.  My physio in Glasgow is probably very close in age with my surgeon Dr Kibler; as a sports physio he treats unusual injuries, but Dr K says this injury is "not in the medical encyclopedia" - and taps his head as he says it.  Basically it's still so 'new' that most  medical professionals - even the very best shoulder doctors and therapists - haven't treated it yet, or even learned it is a possible diagnosis - they get the muscle injury, can observe the shoulder not working, the scapula not moving, but they can't fix it.

Now that we've reached a stage where I think his brain no longer feels blown (as much anyway....) and he has carefully and thoroughly assessed me, we have a pattern - but it is much less passive movement and manipulation than I had been getting before; my exercises have been cut down - AGAIN!! - although this is actually in a good way.  He thinks that even making my shoulder work (or be worked) for fives minutes can be too long for it some days.  I am supposed to do my exercises frequently, but for only two minutes at a time - two minutes every hour, ideally.  Two minutes isn't very long.... but I'm pretty good with the principle.

But back to the quote... this physio is someone who has known me all my life; knows my determination, my desire to get my shoulder function back to as 'normal' as can be possible and what he frequently says to me is that I know what to do - I have the knowledge, the years of experience of training my body and I have to let that tell me what to do.  Dr F (with the nerve scans) said the same thing - that I have the tools to work on this myself, I just have to figure out what works best for me. They're basically all saying listen to your body.

And it does whisper.  It's hard to know what is taking it too easy (not much to be honest, but the whole 'no pain, no gain' thing is so ingrained - why can I not learn it doesn't apply here!?) versus what is doing a sensible amount - that 'line' everyone's been talking about for nearly 2 years now still remains elusive.  However, trying hard to listen to my heart, or my gut, or my body - whatever interpretation - and not to my head - has always produced the best results.

Is it working? Is my progress good?  Well, when I saw Angelo when I arrived back here for Xmas, he said "with any other patient, I'd be really worried about what we are missing when this is four months of progress, but with you it's great that you've taken another baby step - at least you're not going backwards"

I'm taking that as a positive! And listening to your body always seems to make the most sense and produces the best results.  So that is my plan for 2014.... and beyond.  I'm running a marathon here, not a sprint; my expectations shift frequently, just like my pain and perception of how well/ badly I am healing -  but if I have learned anything, it really is to have faith in your own body.  Listen to it whisper.

http://www.pinterest.com/gmun22

2014: Another chapter......

Last January I decided to come up with something positive to focus on and to write a blog post a day to get me through the month.  Let's face it (for those of us in the Northern hemisphere anyway), January is a pretty bleak time of year.  The days are short and dark, the weather is pretty dismal (especially in Scotland) and all the build-up and excitement of Xmas and New Year dissipates instantly.  

For me, this January marks 9 years since I first got ill with Lyme disease, and although I have made massive strides regarding Lyme, I still have symptoms, and no answers - because nobody knows the answers.  This January also marks 2 years since I was diagnosed with detached scapular muscles, and while that story certainly has many other facets and milestones (bad and good - plenty to talk about!), I think it's the whole new year-same old story that makes it seem more significant - probably combined with the fact that I was quite convinced, this time two years ago, I would be in an entirely different place than I am right now, physically and metaphorically.  But ultimately, it is what it is, and life is what you make it, so I am attempting to drum up some positive January energy again this year and focus on some good things - and I do feel a little lucky.... I'm spending most of the month with my parents in Pennsylvania, (currently, excitedly awaiting a snowstorm) and missing the dreich Scottish weather of the moment.

After my new year (stolen) photo, I thought I would go with the theme of life as a story and pick some words, quotes, thoughts or images each day this month; some inspired by the little sayings on my teabags I use (I drink rather a lot of herbal tea - some of my favourite ones have little philosophies on them, so I've been saving them).  It fits perfectly with my love of words, books, reading and writing and I'm hoping it might inspire me to manage a bit more reading and writing this year too. (I'm sure my dad would have some comment about my love of talking to throw in with that....)

So this January for me is going to be about stories and journeys, through words - those magical little sounds we create that make it possible for an idea to jump from our mind into some else's....


To start off the first of the month, I'm 'setting the scene' - here is a quote from novelist Dean Koontz which applies perfectly:

And hopefully, I can change my January story into something positive....... we could all do with a little positivity in January and start off the year with a happy journey!

So, to everyone, cheers for the new year, blank pages, another chapter; and here's to achieving "metanoia" and having a wonderful 2014!

http://www.pinterest.com/gmun22/

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