Rest, don't quit

And the best intentions always seem to be consumed by my body's utterly insatiable need for......... rest.  So January was not filled with blog posts/ positive inspirations/ etc. Honestly, what can I say except sometimes 'sleep happens' (and not always when I need it to happen; so when it comes in waves, I am taking advantage...... sleep heals? Right? - No. Honestly, I don't think so, if sleep healed I would be f***king superwoman by now; but everything else hurts less when I'm unconscious, so sleep still wins).

There was a time I would never have believed writing one thing a day could be too much.... but there's a lot I know now that I would never have believed 'before'. Erm, for example that I actually would learn to rest!

www.pinterest.com/gmun22

 When I am healthy, and fit, and energetic, and strong again (positive mantras); when my perseverance finally prevails -  I don't care that my body is probably going to try to remind me that 'we'* are not in our twenties anymore; I am going to remind it that ALL it did for the majority of my twenties, and so far much of my thirties, was battle with me when I needed to wake up and.... well, do stuff; do anything really - how hard every single physical and mental task is right now.  It* has to make up for lost time.

Therefore when it* is able, when I start bouncing places again, instead of trying to hide a limp and struggle to match the speed of a snail; I will remind my body about all that time we* have to make up for....  I will remind it about aerial yoga, acro-yoga, indoor trampoline parks with foam pits and parkour-trampolining walls..... actually, and parkour, slacklining, 'mainstream' breakdancing..... all of it - I will remind my body that it was just not an option when I first read about it/ watched it and longed to try every single thing -  that when I get my bounce back, I have over a decade to make up for!!  And sometimes, that thought is exactly what I need to keep me going - whether it's battling through one day, or accepting that - yes - 'resting enables healing'.

www.pinterest.com/gmun22

Yes, I have learned how important it is to rest.  I have learned that there are types of pure fatigue and exhaustion that nobody knows how much rest they really need.  That all the rest in the world can't fix 'tired' sometimes.   But because I have learned this; I have also learned I will never, ever take my energy or my health for granted when I get it back.  I have learned I need to rest.  I have also learned never to quit.  Because despite everything - every puzzle, every mystery, every obstacle that I have encountered, I have eventually learned enough to fight it (or sleep through it; cry through it - embracing honesty, remember! And it often feels far more like sleeping and crying dominate. Whatever way.... I have learned I can get through it; whatever that takes).  And one day, I want to look back over this and say I did enough to overcome it.  

And perhaps that is the greatest lesson having both a chronic illness and a chronic injury with severe chronic pain has taught me - never to quit.... and within that, never to give up hope.  One day, when I am back with the right people to help me and support me, I will win; we will win (there are more people than me invested in this journey - for them I am very grateful; but I need them.... and that's another post).  I will embrace my dreams, goals, and feel like I can take on the world again. One day.

I feel this truly expresses how it feels to fight Lyme
  and a chronic injury (/chronic pain).
I look forward to the day where I look at a fresh challenge and can smile.
( pinterest.com/gmun22 )
(It easily covers each individually! So double fight = double reward?! Please universe....?!)

"The danger is not that we aim too high and we miss it, but that we aim too low and we reach it."

- Michelangelo -

*Geek Moment:

*'we' - so the linguistic geek inside me finds this pretty fascinating..... it is very normal for someone with a chronic illness or injury to see it as something that is not a part of them and to talk about it either in the third person (N.B. This is not the same as just generally referring to yourself in the third person.  In some cases, it's batshit crazy.) or as something belonging to them: 'my shoulder was not happy today'.  It sounds a bit crazy, and when I became aware I had been doing it quite a lot (slightly questioning my sanity); I stumbled across an article on chronic pain that talked about it a bit (and said it was totally normal, not a little bit crazy!) I think it would definitely make a cool topic for a thesis (I declared 'geek' as a heading here, therefore 'cool' and 'thesis' can totally be used in the same sentence).

I've noticed other people facing severe health issues do the same thing too.  I just thought I'd clear up the use of 'we' as I do it quite a lot and I don't want anyone to think I've developed a second personality along with everything else.....  Personally, although I haven't really researched it much, the idea of separating yourself from an injury or illness, by not seeing it as a part of you, makes a lot of sense to me.  It's not the person I want to be, or how I want to be defined, but it does feel like a massive part of me, something that is permanently attached right now, so I do have to acknowledge it.  I think it's probably even more common in 'short-term chronic illnesses' - i.e. I fully intend to recover.  I do know that I may not ever get to 100% again, but I know I will improve way beyond where I am now with the right medical support and treatment. So right now, it is a part of me, and right now, I feel it defines me in some ways....... or defines the life I live (or don't live) right now.  It is a part of me; but not quite.  It makes perfect sense to me that it is psychologically healthy to see it as something you are living with, yet also battling; something you have to figure out a way to coexist, while also planning its ultimate demise, and your ultimate victory!

(If this explanation  has just made something you hadn't even noticed even more complicated.... #sorrynotsorry - it's good to exercise the brain! ;-)

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

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 - 

t minus 12 days

"Some are destined to succeed, 

some are determined to succeed."

~ H.H. Swami Tejomayananda ~

t minus 13: Inspiration Required

Looking ahead towards my physio session tomorrow, all I can think about is how hard this is.  Not the exercises, the passive movements, the assisted movements; not the pain, the frustration that I can't make my body do more; not even suppressing the constant urge I have to throw things at any other patient (especially new ones!) doing 'advanced' shoulder exercises that I have been working towards for 3 bloody years! 

The hard bit is trying so f*****g hard and not making any significant progress; of feeling like things had been going "relatively ok" - as in during week one the room did not spin or go black; nobody had to come running towards me with a chair, a cup of water, or to catch me before I fell; and importantly, my physio did not make his 'what the hell is going on with your body?' face - that is definitely what would be termed 'relative progress'.  With those baselines, it really shouldn't be that difficult to make some 'relative improvements'.  So, I guess for a whole week, I did. 

I think it's fair to say this philosophy seemed to be working last week

Until Monday.  When I found my knees curling themselves into my chest and my left hand trying to 'soothe' my right shoulder by just touching it, unable to leave it alone; when I tried to 'hold up' my arm and it just flopped, as if lifeless, back into my physio's hand; when I had to give up on a couple of exercises for that reason; when I could trace the exact location of the long thoracic nerve the entire way down my physio's back to show him exactly where my pain was; when doing one exercise made it feel like that nerve was filling with icy cold water; when I had to keep checking the walls to make sure the sparkling wasn't turning into big black dots (only a couple); when I told the new intern that if I looked like I was just staring into space and not doing anything, it would probably be necessary to get a chair close to me asap, "Why?" he asked. "So I don't hit the floor." and explained my weird 'syncope without loss of consciousness' ('fainting without fainting'); when I realised mascara had been a ridiculously optimistic idea - sleepy half-shut eyes would have been better.  Oh, and when the 'what the hell is going on with your body?' face appeared far too often.

I guess 'relative improvement' is that I didn't need that chair, and the black dots didn't last long.  However, 'significant improvement' it is most definitely not. 

Because, like it or not body, brain says you are going back!

As I think about my next physio session - honestly wondering what surprises my body is going to throw at me next, I also wonder sometimes: how long can I do this for? 

But I remind myself of this quote, because it is the truest one I know:

Nobody can argue with that

At different times, my physios and doctors have acknowledged this difficulty - which quite honestly I think stops me from totally losing it, or feeling crazy.  When someone you are trusting with your health, and therefore your life, acknowledges how you feel - even shares in those feelings with you, it is one of the greatest comforts I think any health care professional can offer.

SURGEON

"Once something goes on this long, it becomes a mental challenge as much as a physical one.... for all of us." 

Said my surgeon, to both my physios, my mum and me - 8 months after my first surgery.  So that would be just over 26 months ago now.

Reckon the words "indomitable will" might sound good on a CV.  Proof? I have this blog...

PHYSIO

"Why have you not gone crazy yet?"

My specialist physio asked....... or rather half asked, I just filled in "crazy" as he struggled to search for a more appropriate word - around 18 months ago.

I sent him this.  He liked it.

DOCTOR

After another attempt to 'push through' failed and various discussions followed, I grumbled to my Doctor, 

"If I wasn't going to try hard, I think I would have thrown myself off a roof a long time ago."

"Probably something much higher."

He replied, as if we were having a perfectly normal conversation - sometimes it feels like his sense of humour keeps me sane. That would be about 20 months ago.

Because my awesome doctor is as crazy as I am, apparently

I think back over everything I've tried - I've had some little successes, like the incredibly significant shoulder shrug that held so much optimism and brought so much excitement to everyone - myself included, but that was 26 months ago too.   I really feel like I'm still waiting on the next 'shoulder shrug' - the next significant thing that lights the way with optimism again; that whispers quietly to me, "this is working".  And even more importantly, I believe it.

Inspiration is always good; actually sometimes, it's essential:

Not planning on it.......

"Success  and  failure.  We  think  of them  as  opposites,  but  they're  really not.  They're  companions - the  hero and  the  sidekick."

~ Laurence  Shames  ~

A week of good wishes for YOU

We're one week into 2015 and my blogging intentions have not exactly been realised (i.e. I've failed miserably - but I'm aiming for positive, so the first way sounds better!). 

So here is a week's worth of happy, positive, and inspirational words; wishes for 2015, and for life.

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

“This world is but a canvas 

to our imaginations.”

  ~ Henry David Thoreau ~

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

"Life isn't about finding yourself. 

Life is about creating yourself." 

   ~ George Bernard Shaw ~

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

“The time you enjoy wasting 

is not wasted time.”

~ Bertrand Russell ~

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

“Learn from yesterday, 

live for today,

hope for tomorrow."

   ~ Albert Einstein ~

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

“Do not lose hold of your 

dreams or aspirations.   

For if you do, you may still exist 

but you have  ceased to live.”

   ~ Henry David Thoreau ~

Let your art blossom   © Gail Munro

And the day came when the risk to remain 

tight in a bud was more painful 

than the risk it took to blossom.

~ Anais Nin

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

And throughout the YEAR!

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

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/

Progress, inspiration, motivation, and smiles

This week has been full of ups and downs.  In amongst those ups and downs, I have made some pretty remarkable steps forward with my shoulder.  I have waited a week to write about it, because, honestly, I've made steps before and within a couple of days they disappear again.  These have stuck for a week, so I'm hoping it is ok to share them now.

Compared to what I used to do, as a gymnast, and compared to how I used to be at my very sickest (virtually house-bound and hardly able to walk), there are many comparisons to be made.  Focusing on the positive differences is great and motivational; focusing on the distance I still have to go always makes me realise what a huge challenge I have still to continue battling - but I do not believe it is insurmountable.  I believe there will still be rollercoaster days (and weeks) and these will continue to test me; but I am beginning to feel like I can win this fight.... even if it takes more time than I ever imagined.

My HUGE achievements this week have been that I manage to do what can only be described as a 'baby girly press up' - a press up on my knees, bending my elbows about 1cm for my press up.  It is still awkward to get into position (involves bouncing about on my left hand before I can place my right hand into position); my weight is not evenly distributed - but I am putting some weight through my right arm/hand -  a major achievement! I can do two sets of 5 'press ups'... dreaming of the days I could do 20 full press-ups with claps in between in about 20 seconds! Oh well... gotta start somewhere.  I can also hold a 'baby girly plank' position, and then I can also do scapular retractions in this position - two sets of 3! - but my physio is especially excited about this as it means my brain has really figured out how to make my 'new' muscles work.  That's a really big deal.

I have also now progressed from the ability to make my arm shake as I try to lift it to actually raising it about an inch off the floor while lying on my stomach. I do five of these.  My physio tells me it is not one set of five, but five sets of one, since I need to rest in between - so the aim is to get it to two twos and then two threes... baby steps, as it has been all along, but the baby steps are working.  Again, this exercise means my 'new' muscles are 'talking' to my brain again, as it isolates them - they are doing ALL the work here.  Another really big deal.

For months, doctors and physios have also been stressing to me how important it is to strengthen my core, and I simply haven't been able to sustain any core strength exercises because of the pain they cause.  I have literally felt my core muscles turning to mush! This week I've managed to do 20 sit ups (well, crunches really.... on a ball) every day - a whole two sets of 10.   Amazingly, this is actually enough for me to begin to feel my muscles toning up again - in fact, there is actually a visible difference in my tummy which was beginning to develop this little wobbly part for the first time in my life..... disaster averted! (Um, yeah, because THAT was my disaster in all this....)

So that's my daily exercise regime now, along with still some basic range-of-motion movements, just to continue with those and continue to teach my brain how the sequence of movements is supposed to work.  I can't believe how exhausted it makes me, and I do still sweat, but the sparkly lights do not appear (as long as I rest in between exercises) and the impending blackness in response to any effort from those muscles seems to have disappeared..... finally!

The pain is still there, and it is still a major factor but I have decided to see if my body is ready to push through it a little and build some strength, which should then support my muscles more, reducing the pain by increasing the strength.  It's the viscous circle I've been caught in all year, and my physio is very much stressing I have to take it VERY slowly (I am not allowed to try any more headstands....pillows, walls, or anything - no exceptions! Physio's orders. To be honest, it hurt a bit too much anyway, but I did elephant-lift my feet off the floor for a couple of seconds..... I'm viewing it as a positive sign ...) and all my (approved!) exercises are with very low reps, small sets and tiny increments.

I've been taking choline and inositol as a supplement for about 6 weeks now - that is supposed to improve nerve healing (kind of, it's complex - all related to acetylcholine production and pain receptors and generally neurobiology that goes a bit beyond my understanding), but I think it could be helping.

I have also now been having Feldenkrais treatments for a few weeks and I have felt a benefit from these too - I am still unable to really explain them (it's a very slow process, I will try to explain at some point, right now the focus is on visualisation to increase body awareness - I'm really not sure how it's doing anything, but my body reacts pretty strongly to it even though I feel like I lie for 30 minutes and concentrate on moving my eyes in different directions with them closed.  It's really rather weird, but I definitely think it is helping somehow).  Feldenkrais is also supposed to promote nerve healing and the sessions make me sleep - unfortunately during the day; this is not good for my nighttime insomnia, but it's still sleep and they say we heal while we sleep...    

I feel most of my pain is more specific now.  It's still pretty severe at times; my attempts to do anything and go anywhere are still battles to manage mt meds, and fight through the pain, ready to collapse in bed (with my ice machine) as soon as I get home; but even with that, all the crazy parasympathetic pain does feel like it has calmed down a bit more, not entirely, but it's taking a positive step in the right direction.  

In the meantime, I am going to continue to watch this video on Youtube several times a day for pure inspiration, motivation and smiles.  Watch and be amazed!  It's simply mindblowingly amazing!!!

And yes, I'm super jealous.... and probably going to become slightly addicted to this superstar, Damien Walter's YouTube page:

Maybe one day.....

“Dwell in possibility."

  ~ Emily Dickinson

Look out world...

I think several years ago I would have interpreted this entirely differently - and so would we all; we are all shaped by our own experiences.

But now: I have no idea who I "ought to be" - and I'm ok with that, I think it's back to life being a journey kind-of-thinking.  At one point, in what seems like another lifetime, I would have thought that by the time I was in my thirties there were many things I "ought to be" but now I have learned that different things are the important things.

I'm not "what I want to be" ... or maybe I'm actually ok with this too, honestly, I have no idea what I want to be... Why do I have to be anything?  Why can't I simply be?  Cogito ergo sum? Right?

But I certainly have come a long way from "who I used to be".  I genuinely believe how people handle their problems defines them.  Our problems do not define us unless we let them; we choose how we handle them - and that is what defines us.

And, most importantly, I'm definitely not giving up on "becoming what I know I can be"... Just give me a little bit more time and then look out world, I'll be back!

I feel this fits with this today too:

http://pinterest.com/gmun22/

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