The World's First Scapula Cake

 (in cyberspace anyway)

One year surgery anniversary!

The world's first scapula cake... according to Google & Pintrest searches

I am actually writing this from physio just now... where we have all enjoyed the scapula cake!

Later update:

One year ago today Dr Kibler reattached my lower trapezius and rhomboid muscles to my scapula.  It has been one rollercoaster of a year and I still have a lot of work to do before I can handstand again... But I have made progress; I am on the road to recovery (bumpy as it may be)... so what better way to celebrate than with cake?! 

 All the baking, mixing and icing made by my Mum (and as delicious as always!) and I managed to do the design myself - mostly left-handed (can I consider acquired ambidexterity to be a benefit of the surgery?!).  I did search online for some design inspiration... apparently nobody's ever made a scapula cake before... imagine that....!  Between appointments at my physio clinic and doctor's surgery today, the cake is now ALL gone!

I wish I could have shared the cake with everyone who has helped me this last year, I am especially thankful to Dr. Ben Kibler and Aaron Sciascia (as well as many additional staff members who dealt with me while I was under anaesthetic/ barely conscious and on follow-up visits) at the Lexington Clinic in Kentucky; Dr. Sami Khella and Marty Kelly, DPT at Penn Presbyterian Medical Center (University of Pennsylvania); Angelo Labrinakos, DPT (and all his wonderful staff) at Kinetic Physiotherapy in Downingtown, PA; Dr. Len Schuchman my American PCP ('GP'); and Dr. Gerry Williams at the Rothman Institute.  

I'm sorry I didn't get to share the cake with you all... I'm sharing the photos instead! I am sincerely thankful for all your ongoing help... and I will be even more thankful when I win my (proposed) cartwheel competition with Angelo one day!

"The greater danger for most of us is not that our aim is too high and we miss it, but that it is too low and we reach it."

  ~ Michelangelo

Chaos

Tomorrow marks one year since my surgery.  When I look back over my blog, and my diary, to this time last year I was filled with such optimism - a sense of excitement that, finally, I was going to be 'fixed'.

It's really hard for me to compare then and now.  If everything had been the same, and I had still to make the same decisions, I know I made the right decisions and would make them again - without the surgery, I would never have regained the use of my right arm.  But honestly, I thought I'd be handstanding by now!

My case has been unique, at least... I suppose... my doctors tell me it is "fascinating" and "interesting" for them, and that they are learning from it so at least I feel it will help someone else with a complex case in the future.

And I am getting there, it was probably better that I did not know how hard it would be, how long it would take, or, worst of all, how much pain I would continue to have now - one year on.  But nobody knew how my body was going to respond.  And nobody knows how much of a part Lyme plays in recovery from surgery either - there is some speculation, but there is no solid scientific evidence that gives any proven information on possible effects.  It is easy to feel low, to feel I want to make faster progress, but I always remind myself that I would have made exactly the same decisions if I had to do it over.  And at least that makes me realise that even although I wish I was more in control of it all; I wish I could speed up the healing; I am in the best possible place I can be in, given the circumstances I had to deal with.  

At physio on Monday, I was complaining of increased headaches and neck pain and after a thorough assessment, Angelo said, "your neck's in the wrong place".  Great... another super-weird thing I've been told this year. He told me I am trying to do too much again -  a small improvement is exciting, but then trying to push it too much can have a negative effect.  Sometimes it seems never-ending, but all I can do is keep at it, work hard (as appropriately as I am allowed) and still give my body time to heal... which, it still needs lots of, apparently!  One of the hardest things is accepting that trying to do everything for myself is not the best thing for my body and accepting help with day-to-day things (as simple as filling or pouring a heavy kettle, even left-handed) is something I really need to do.  It is just so difficult to feel like I have to say "I can't do this" a hundred times a day.  I have always been determined and independent and I hate the feeling of failure and inadequacy that produces.  At the same time, I then have to go back to the advice I was given last year about thinking of resting as "enabling healing" and that (sometimes) helps.... a bit...

I saw this on Pintrest, and given my life over the past year has been chaos (physically, emotionally, actually I think in every way imaginable!) I am therefore hopeful that this magic little bit of wisdom from cyberspace is correct and great changes will come from this.

Gotta keep some hope...........

It also reminded me of one of my very very favourite quotes, which I used exactly a year ago too:

“You must have chaos within you to give birth to a dancing star.”

   ~   Friedrich Nietzsche

Climb the Mountain and Sing!

The beauty of friendship

Just a simple thought to end the weekend, spent with a friend - I very much appreciate the visit!

Any difficulty in life shows us who our true friends are.  Sometimes they are new friends, often they are old friends but it never really matters because the way they act makes them very special to us.

When I got ill initially, way back in 2005, I lost some friends and it was hard to deal with at the time.  But it means I know now the friends I have are the very best friends out there.  They are the ones who have stuck by me, who have been there for me, whether in person, email, or skype; they have kept in touch and buoyed me up at my lowest times; we have shared joys and sorrows and problems with each other and I do not know what I would do without my friends.

Friends are those rare people who ask how we are and then wait to hear the answer.

         ~ Ed Cunningham 

Five days...

Five days and no blogging.  My attempt to keep myself motivated and keep finding inspirational things has had its own little holiday this week.... while I slept! 


Since my Feldenkrais appointment, everything feels different. Twisted... except that probably mean untwisted, because I was so twisted before.  My LEFT side of my neck is agony; holding my head up on its own is just exhausting.  I am back to my neck support collar - not exactly happy to be using it again, but trying to focus on where this might be heading.


I actually had very similar pain to this after my surgery, after I had the sling off, my neck struggled to support my head on its own.  The left side would spasm and I would end up with pain right up into my ear, and migraine-type pain on the left side. I am convinced my entire body is doing something similar, so the other side has compensated and developed a way to hold my head up and use the neck muscles it can.  Now, I am being 'reset' as such, so it does make sense to me that it is going to take time, and it has to go through this kind of progress.  These are the muscles Dr Kibler told me were "starting from before scratch".  So, it feels bad and has been making me so so tired this week, plus my head has not stopped pounding, so anything involving too much concentration seems to have been OUT.


I've slept a lot, gone out a little bit (although, as always - mostly to physio!) but mainly just tried to do my at-home exercises and rest my head as much as I can.


I've been trying to learn about Feldenkrais, and it just seems to me, right now, to be something that is very difficult to explain, without further sessions.  It's basically an increased mind-body awareness and I hope that will help my brain reconnect with my injured muscles faster.  It makes me think of this:

It's always one that comes back to me, especially with my experience of doctors -  with both my shoulder and my Lyme problems.  There are doctors, the majority, it often seems, who are so convinced that they know everything, therefore if they don't know what's wrong with you, you have to be making it up, or exaggerating. It's ridiculous.

So, right now, I feel that I do not understand Feldeskrais at all.  But I don't think I have to, right now.  For some reason - I'm going with intuition again! - it sits well with me; it makes sense to me; and also Marty thinks it's a great idea.  So I am definitely going to do the intensive course in March.

“He who thinks himself wise, O heavens! is a great fool”

  ~ Voltaire

Life is a brick wall...

My first Feldenkrais appointment was interesting, but I don't really have much to say about it yet.  The practitioner was really lovely and I got a great vibe from her; I am optimistic it could be helpful, and so is she; but it takes a couple of days to really feel how my body will react to the treatment.  I also have some online lessons to listen to for visualisation and then I will see how I feel about moving forward with it.  I did have quite a strong response to today's session - which seemed very gentle at the time, and was not painful at all - but an hour later I was in my bed with a raging headache and fell asleep for a while this afternoon (very unusual for me to sleep during the day). I know that's not unusual with some therapies and have experienced similar with reflexology but then felt much better the following day, so I drank lots of cleansing herbal teas and water and I am keeping an open mind - and planning to do some reading on it and try the online sessions over the weekend and see how things unfold.

But it's the weekend, yay! I don't usually feel that way because it's not really any different from any other day for me; but I feel like this has been a tough week, so I am pleased to have survived it!  This quote/ poster/ analogy I found on Pintrest (surprise surprise) seems to sum up my week... my year.... probably life for everyone:

 (I'm not entirely sure the best way to reference every quote from Pintrest - this one took me to a 'nothing found' Tumblr page; but it's not my quote so whoever came up with it gets all the credit... I just don't know who you are, sorry!)

To be honest, it'd be pretty helpful to have a shovel, or a ladder; or perhaps a wrecking ball some days; and then there's always eye make-up remover, tissues, moisturiser... and a new day.... but it's still a great analogy.

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

  ~ Henry David Thoreau

Feldenkrais

Today (well Friday, I've still to sleep, but it is after midnight...) I have my first Feldenkrais appointment. I don't know an awful lot about it so I will learn much more at the session from the practitioner but it is somatic re-education - basically, I'm hoping it will help with the neuromuscular regeneration and help my brain form new (or re-form..?) neuromuscular connections and help in my recovery of movement and strength.

I stumbled across it a couple of weeks ago (actually while searching for "frozen scapula" on Google, realising my blog was the top hit - and that certainly wasn't very helpful in learning more about it - and then clicking out of sheer curiosity on a piano playing forum that also came up on Google's first page of "frozen scapula" searches).  Incidentally my specialist physio endorsed both the Feldenkrais method and some piano exercises... soon I will be better at scales than ever before!

I read a bit about it and it just seemed to fit with everything; I got a really good gut feeling about it.  From what I read it seems to be about helping your brain and body communicate better, enhancing movement in everyday life, but also for athletes and dancers (and helping with assisted movement in ill or injured people).  After the benefits I seem to be getting from trying to utilize muscle memory in my exercises, this seems like another new thing to try; a new approach that will fit with everything else I am doing.  I am really hopeful this will be a positive thing.

The quote is from the creator of the method, Moshe Feldenkrais, and the image came from this site.

“Imagination is more important than knowledge. Knowledge is limited. Imagination encircles the world.”

  ~ Albert Einstein

"Too determined to be defeated"

Continuing on a theme:

(From Pintrest)

After I had seen the specialist physio, two weeks ago now, my Mum and I were talking in the car, thinking about how crazy this year has been.  When I was diagnosed by Dr Williams at The Rothman Institute in Philadelphia (in January 2012), he pointed out my rhomboid muscles to my Mum - if you pinch your shoulder blades together, the kind of long 'bumps' or 'hills' that appear between the scapulae and the spine are the rhomboids.  He said, "I suppose you were born with rhomboids?"; "um, yes." He then pointed out to my Mum the place on my back right shoulder where there seemed to be a groove, instead of a 'bump' - no muscle.

When we saw Dr Kibler, he did the same thing.  He calls it a 'divot' - basically the same thing, a visible deficiency where the muscle should be.  It's hard for me to see it properly because it is on my back, but I have managed to set up mirrors at home and see what they were talking about.

Since the surgery, at my major follow up appointments there are certain things I'm always asked to do - strength tested, resistance tested, range of motion tested, small movements tested, etc. Usually my Mum is in these appointments with me.

After the most recent appointment with Marty my Mum said to me, "That's the first time I've seen your muscle move." Turns out, this entire year, in all these appointments, my Mum has been terrified the surgery did not work properly because there was no sign my muscle was moving yet.  Another thing I've been told in the past couple of weeks that nobody wanted to mention before! However, given she has now told me, and the muscle is moving, I am delighted I - and she! - don't have to worry about that anymore.  Unfortunately it is continuing to protest severely when I try to use it.... but it's ok because I found this poster (also on Pintrest):

And I think perhaps I'll make 100 copies and put it up everywhere... just for some added motivation!

Never, never, never, never give up.

  ~ Winston Churchill

Determination

It's been an, um... interesting week.  I think it has been one of the most challenging weeks since my surgery.  I am optimistic and very pleased that my muscles are trying to work again, but I really didn't expect them to hurt this much while they're trying!  I realise this is another stage in the process... but nothing has been going very quickly... so it is a mental challenge to accept that the intense pain is a positive thing; to manage it appropriately and to try really hard not to let it beat me, emotionally.

It's amazing how draining the pain is.  When I get these 'episodes' of extreme pain, the muscle spasms very suddenly and severely, I sweat and feel really nauseous, the black dots and sparkly lights are back with a vengeance - I feel like my body's been through a traumatic event and just wants to sleep it off - it sounds so dramatic, but people keep telling me it is my body's response to severe pain, it is not something I can control.  It makes it so difficult to do anything else, to concentrate or even think about other things when the pain is all-consuming.  (The drugs don't really help with that either!)  Again, it's another thing I think I should be able to control more and to just power through and make myself do things... but then it's another thing that all my medical professionals explain to me is outwith my control...

However,  I have been shown how to try to minimise the reaction/ spasming.  So, today - when walking down stairs caused my rhomboid to spasm, I got myself into a position (kind of half lying my upper body on a table.. or worktop... or closest available surface) where the weight was taken off my shoulder and got my arm into a position where any strain or stretch on my rhomboids is relieved (scapula retracted), and my mum very very tentatively, and very very gently massaged the area, as my physio said.  It did help.  I think the heat, painkillers, muscle relaxant and anti-spasmodic drugs also really helped; but I also think I did manage to stop it turning into a full-blown, close-to-blacking-out, biting-the-pillow experience this time........... which is an improvement.

It's a bit frustrating realising that my muscles and brain seem to be communicating again but not knowing what is going to set off the cramping and spasms.  I had a chat with my physio yesterday about trying (STILL) to find that balance between doing enough to get a steady improvement without causing setbacks, and doing too much and exacerbating the pain again (more).  I am, as ever, determined to keep working at it.

Everyone seems VERY encouraged that this is happening.  My physio said to me yesterday, "You probably had times this year when you wondered if you were ever going to be able to use your right arm again - this means you definitely are."

(I think this means he had times this year when he wondered that too... So I think it's a good thing he's saying it now - when that worry has subsided!)

Honestly, it worried me how long things were going to take, and how much pain I was going to have for a long time - and I still don't know the answers to those questions.  But I really didn't entertain not getting the use of my arm back as an option.  I knew it was a concern, but I felt more determined to find something that would work; anything; that would let me use it - I never actually considered the rest of my life without the use of my arm, even though I knew doctors had talked about it.  It just wasn't an option for me.

This quote fits really well with that.  I find my blog really beneficial for positive re-enforcement - if I say it out loud, I am also saying it to myself, and hopefully also passing along some positive encouragement to others.  But I think the quiet determination inside has to be louder.

And I think there will be plenty of determination required to get me through the next few weeks.

People often say that motivation doesn't last.  Well, neither does bathing - that's why we recommend it daily.

   ~ Zig Ziglar

Wise words

"Promise me you'll always remember: you're braver than you believe, and stronger than you seem, and smarter than you think."

          ~ Christopher Robin

                ~ Winnie-the-Pooh

(Image from Pintrest)

“Become who you are.”

   ~  Friedrich Nietzsche

Grumpy

Today I feel grumpy. I had a decent amount of sleep, but really it was very broken by pain with every movement, I couldn't get to sleep because the pain was making me uncomfortable and then the more annoyed I get the more elusive sleep becomes.

However, I made it through the day (with a little help from my drugs), read some news, watched some video, obsessed over how much snow might fall in the Philly area - disappointed about this too! Four inches.... ok, so four inches might have caused London Heathrow to shut down a few weeks ago (ridiculous) but four inches here is nothing.  It is not exciting.  If there's a snowday and blizzard watchs only slightly farther north of us, I'd really like some decent snow too!

Managed to play bananagrams after dinner but I do still struggle to sit for long.  Joining in the party now, are my re-connected muscles that have started throwing their own temper tantrams as soon as they get tired. BAM. SPASM. F**K. So, off I went to bed feeling decidedly grumpy, in pain, and struggling to find relief.  

Got myself all sorted into bed, ice machine plugged in, velcro-ed around me, pillows built up around me, computer on knee, tea in left hand and then something fell off the bed..... please don't let it be important.... please don't let it be important..... I looked and, most definitely out of reach, lay my phone: my all-in-one flashlight, alarm clock, time in the dark etc.  Kind of necessary.

I eased my left side over until I managed to perch the tea on the box on my nightstand; especially there for that reachable purpose (after coffee went everywhere last week - should've thought of it sooner); un-velcro-ed the ice machine; considered trying to reach the phone without getting out of bed, decided that was too dangerous, climbed out of bed, got my phone.......... climbed back into bed (this is exercise in itself), re-velcro-ed the ice machine's shoulder pack around me, fixed my pillows, got my computer back up on my lap, reached for my tea......... and knocked my just-about-to-eat packet of popcorn off the bed. And here we go again....

It's so annoying, just simple simple thing being such a process... well, usually it's just a bit annoying, but today, in the depths of my deepest, darkest grumpiness I was really frustrated.... OK, I wanted to break things.

I went on Pintrest to search for a grumpy quote and - typically -found all sorts of inspirational ones.  I'm not sure if this made me feel better, or annoyed that even the universe can't just entertain my grumpiness for a couple of hours!!  Anyway, I did find a few worth sharing... more of the funny or inspirational kind, and they did make me smile....

I have the ingredients for this.... perhaps I should try it....!

Yup, it's all about perspective.  Universe: I feel I deserve a few more good ones than bad ones for a while please?

I have also seen this a few times on Buzzfeed - the title is "19 People Who Are Having a Way Worse Day Than You" and to be honest, I don't think it really applies to everyone (unfortunately I'm quite a good contender for that just now) but I simplye adore number five.  As wrong as it is, I can watch this clip over and over and over and over and over and laugh more each time.  Having hit a couple of bad springboards in my life, I do have sympathy for the guy too, but I've never seen it done like that before!!  Actually, here it is on YouTube:

I dare you not to laugh....!

And this little rhyme just made me smile.

Nothing is permanent.

   ~ Buddah

I will try again

I saw this quote today on a magnet by Quotable Cards and it actually made me feel a bit emotional and I choked on my words as I tried to read it out loud.  I started to read it to my Mum because it really resonated with me and I didn't quite manage to get it all out.  Sometimes it's just the simple things that really hit a nerve.

I think it applies to everyone, at some point in their lives, in probably a billion different scenarios, as we all fight our own battles... The point is that just getting up and dealing with each day, and with whatever the day throws at you is courage.  The alternative is to hide under the covers, away from the world; the human equivalent of an ostrich hiding its head in the sand.  And while this is highly appealing at times, trying again tomorrow is what gets results. Even if it takes a thousand tomorrows.

The best thing about the future is that it comes only one day at a time.

  ~ Abraham Lincoln

A different perspective

I am still rather tired so I think this will be short and sweet as well.  My poster/ quote of choice today is by Andy Warhol:

I think it can be applied to everything.  In my very favourite book, Sophie's World by Jostein Gaarder, Gaarder uses an analogy to explain to Sophie the difference between children's and adults' perceptions of the world.  He says the world is like the white rabbit pulled out of the magician's hat and the adults are snuggled, safely at the bottom of the hairs where they have become comfortable and familiar. Young children are perched on the tip of the hairs, amazed by this fascinating, captivating new world around them and curious as to how things work, why they happen and so on.  In Gaarder's analogy, as humans get older, they slowly slide down the hairs into the safety of the white rabbit; no longer perched on the edge of their world.  They have learned what they need to do to survive and what happens in their world, and they don't really think too much about anything else.  Gaarder's point is that there is this amazing world - universe! - out there and that we should really feel obliged to explore it; to let it excite us and teach us, and entertain us - there are amazing things in our world - and beyond - that we will never learn, see, or discover if we simply slide down the hair of the white rabbit and never notice when we are pulled from the magician's hat.

On a more personal point, I feel exactly this way today.  Achy muscles, cramping muscles? Never anything exciting.  Definitely a pest, a nuisance, severely painful, irritating and ordinary.......... except that my sore, cramping muscles haven't been able to to that for such a long time that their (so far not entirely successful) venture into working IS something that should thrill me!! Once they stop producing sparkling, black spots, nausea, dizziness, wobbliness, sweating and instant-onset exhaustion from pain; I will be a lot more excited, but right now I feel it is positive.  It makes me feel optimistic that for the first time in almost 19 months when I try to move my arm, it shakes.... ok, yes, it doesn't move, but it's trying.  So I am most definitely finding ordinary things are thrilling!

Wisdom begins in wonder

  ~ Socrates

So sleeeeeeepy.............

Today, I am struggling to think of anything inspiring and uplifting.  Honestly? I am tired.  Exhausted. Completely energy-less.... Out of spoons (if you've read the spoon theory)

I'm tired and sore after physio yesterday and I really just need a good night (um, and day)'s sleep to make me feel human again.

So here's some cute pics.  This is what I feel like I'm doing. Every now and then I open my eyes and try to keep writing....

And I already feel quite sure that this is my plan for tomorrow!  

And then, hopefully, I will feel more like myself again and be more able to think! 

But aren't the sleeping pups and cats cute....??

(All images from Pintrest)

“Why does the eye see a thing more clearly in dreams than the imagination when awake?”

  ~ Leonardo da Vinci

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

She believed she could...

... so she did.

I came across this quote/ image on Pintrest recently and I absolutely love it.  Talk about being simple, to the point, and still inspirational!  I've tried searching to find the author or origin, but the quote is all over cyberspace without any author attributed. (If anyone knows, please let me know.)

Just keeping things short and simple today, like the quote.  I think I got cramp in my rhomboid muscle tonight.  Picture an overly dramatic footballer hitting the ground with cramp in his calf, switch it to the shoulder and factor in some major torn-repaired-drilled-post-surgical-pain-issues as well and that's getting close.  I bit my pillow while Mum half-balanced, half-held a hot water bottle on my scapula until I stopped seeing black spots and sweating; and my ability to breathe and talk (and cry) returned;  and then I thought..... my muscles are trying to work!!

Then it did it a couple more times and my attempt to be positive and excited kind of dissipated, beaten back by the ferocious pain; but it feels like, maybe, my muscles are waking up... hopefully my physio thinks this is good when I see him tomorrow.  And then hopefully this phase will not last very long.

I don't believe life is really simple, but I do think we over-complicate it (as I am doing to this eloquent, simple quote!).  Sometimes it's nice to have a reminder that it doesn't have to be complicated all the time; sometimes, we can just decide to do something - and we do it.

Happy Monday everyone!

Life is really simple, but we insist on making it complicated. 

  ~  Confucious

Life in Wonderland

I've had a few conversations recently - and in the past - with various people, all dealing with different things that have had a dramatic impact on their lives, altering their path beyond anything they had imagined.  One day you think your life is heading in one direction and then - BAM! - something happens - an illness, a death, a fight, an accident; something completely and totally unexpected - and life as you know it is forever gone.

People often ask me 'life' questions - what are you going to do with your PhD? Where do you think you'd like to live?  Do you see yourself getting married?  Having children?  Where do you think you'll be in 10 years from now (that's usually in a stupid magazine article rather than a conversation topic)?

I HATE those questions, because I simply don't know.  And I'm actually ok with that.  I haven't really figured out how to explain it properly to other people, because almost everybody PLANS.  I just feel like, for the last eight years, any (big) plans I've made haven't gone as expected so what's the point?  And that sounds a bit negative and pessimistic, but I don't mean it that way at all, it's more of this acceptance of life as an adventure... and I am painfully aware of the fact that we just don't know what's going to happen... and that can be an exciting thing (well, I'm hoping it has to be at some point...!)

I like to think that we have all just fallen down the rabbit hole and are making our way through Wonderland - our world - , dealing with the twists and turns that life throws at us.  I've always loved Alice in Wonderland and apparently Lewis Carroll sat and wrote under an old tree in our old garden in England, in the house we lived in when I was a baby (before there was a house there) and although I've read he wrote Alice in Wonderland while in London, I still think that's really cool.

I came across this excerpt with the original illustration on Pintrest a few weeks ago and it just fits so perfectly with my life philosophy right now.  I printed it out, framed it and put it on my wall.

It also makes me think of this excerpt from Robert Frost's poem (The Road Not Taken).  Perhaps we don't always get to choose what we do or where we go, but whatever path we take, life is always an adventure - and looking at it that way is always better than wishing it could have been different.

“Two roads diverged in a wood and I – I took the one less traveled by, and that has made all the difference.”

   ~ Robert Frost

Dance in the rain

I really enjoyed doing my daily blog in January and am delighted some of my friends have asked me to keep going because it gives me a great reason (/excuse) to do so!

I thought this month I'll keep going with the inspirational thing, since I certainly need lots of it right now!  So I'm going to mix some things I love together - books, quotes, words and art - and try to post an inspirational picture and quote, combined or linked, every day.  I've been working on some inspirational art to put up on my walls - I figure an overload of motivation and positive thoughts can only be good... Plus, it gives me another theme.

I have just actually spent a couple of hours managing to hang some pictures on my wall. (Awkwardly, but accomplished! Ok, half-finished...)  Sometimes it feels amazing how my body has got used to doing things with such limited use of my right arm... one of the questions on the shoulder function questionnaire I've done a lot (at various places... many many times...) asks how much difficulty do you have getting dressed? (I can't do this/ much difficulty/some difficulty/ no difficulty) and I'm never quite sure what to put anymore.  Initially, getting dressed one handed was a real challenge - there were times I needed help as I simply couldn't do it on my own; but now I am quite adept at getting my left arm out of my left sleeve without requiring the right arm to 'pull' (go on, try it! It's not easy!!) - so getting dressed is not difficult anymore. (Ok, there may have been a couple of occasions I've got stuck in a dress this winter and had to shout for help from my Mum, but just a couple!) But that's not because I don't have a problem, it's because there just seems to be this amazing ability in the human brain to adapt and make something work, so I never know what answer to put on the questionnaire (then multiply that by about 20 questions... although after question 5, I pretty much fail at everything)!

And as much as that's a good thing, it is also my biggest problem right now.  My Dad was talking to our friend, the neurologist who has been treating me (actually, who saved me by getting to the actual diagnosis) and he said to my Dad that everything is working, mechanically, now, it's just "in there" and tapped his head.  My Dad (despite sometimes asking me a similar thing or telling me it's having confidence in my body - which I then disagree with: it's not!) said he felt quite defensive of me and said he didn't think it was that, I was really trying as hard as I could and working hard.  Our friend laughed and said that wasn't what he meant, it was not psychological, it was the brain that had to 'learn' how to make the muscles work again.  It gets 'stuck' in a pattern of movement - and it's SO hard for me to really understand this, because I just think I should be able to make my body move however I want - but it gets stuck because it has developed certain movements, as a protective movement or as an alternative movement to prevent pain and now my challenge is to change the neuromuscular pathways; to teach my brain how to use my muscles normally again and this will increase my movement, which will eventually allow me to start increasing my strength, which will - hopefully - eventually reduce my pain!!

When I think back to February last year, I was SO excited to be getting the surgery and finally having doctors who knew what was wrong with me and how to fix it. But I had no idea what lay ahead... Just as well...!

Today I have a picture I painted (well, I use the word loosely because dribbled paint and blew on it is more accurate) and a card on a bookshelf that go together.  I've had the card a while, and I love the quote and a few months ago I saw a similar picture somewhere and thought it really visualised the quote on the card; so I painted my own version of it and I really love the outcome:

And my quote for today is for my Mum.  It's her favourite, and so very true:

"What lies behind us and what lies before us are tiny matters compared to what lies within us." 

  ~ Ralph Waldo Emerson