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.
"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...|
"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.|
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 ~