I've learned that when it comes to my health, going with my intuition really has been the right thing to do - and it's really been a battle... For example, the other day I counted that I saw seven doctors, one nurse, and five physiotherapists when I was in Scotland last year. Thirteen medical professionals, all relating to my shoulder. Some only saw me once, some multiple times. None of them had ever seen my injury before (it's well established now that this is unusual so that is not surprising) so no-one diagnosed it; but the treatment I got from each medical professional was completely different. Some were kind, caring, as you would expect from a medical professional, and some were not. These are, of course, the ones that really make me think about this whole 'intuition' thing - the ones that were not caring, or compassionate - or even pretending to be - but generally dismissive and condescending. The ones who sit peering superciliously over the top of their glasses, legs stretched out in front of them, crossed at the ankles, and their hands clasped tightly behind their head, elbows sticking out - the very embodiment of professional arrogance.
Here are a few chosen quotes from various appointments that best illustrate my point:
You're young. You'll heal.
(After yanking my arm in the air - a motion I was completely unable to do myself, given the muscles required to do so were detached - and not even looking at my scapula... which was unable to move, so a physical examination to confirm that comment might have been useful.)
You seem overly focused on pain.
(Funny that, when actually two major muscles were detached from my shoulder and I couldn't use my right arm.)
You need to deal with the emotional aspect of pain.
(Detached muscles? Sure, refer me to a psychiatrist... that's the solution.)
Nerves don't do that. They either work or they don't.
(Seriously? After explaining two doctors and two physios thought I was having some hypersensitive pain issues. And now, I have RSD-type symptoms... what's that? A syndrome where the nerves are hypersensitive to pain.... possibly caused by not treating the pain in the first place.)
EMGs are just tests used by private healthcare to make a lot of money
(After me saying the doctor in the US recommended I had more nerve testing done in September 2011 if I was not making progress. Eventually, in January 2012, further EMGs played a major part in setting me on the path to my correct diagnosis.)
She'll just get over the shock of not needing surgery
(Overheard in the corridor by my Dad while my Mum was trying to help me get dressed but actually I was curled up on the bed crying because of the scapular movement the doctor had forced during the examination... that was his comment to the nurse when my Mum stuck her head out the room and asked for some water for me.)
And perhaps the best:
You might just need to learn to live with it
(This was after asking about extremely painful pinging sensations I was having sporadically... the pain they were causing was so horrendous it literally rendered me speechless (amazing, right?) and resulted in the one A&E visit I made in Scotland. Each time it 'pinged' I lost more movement in my arm. Eventually, after visualising my injury, and the state of the muscles and scar tissue during my surgery, my surgeon believes the 'pinging' events were actually more muscle fibres detaching from my scapula as the tension increased and the muscles weakened.)
Actually, on second thought, maybe this was the best... tough call:
This is not like being told you have chronic fatigue syndrome when you actually have Lyme disease. Nobody's missed anything here.
(Apart from wishing I'd not given my entire medical history to be judged so blatantly, this doesn't really need any further comment...)
I could really write a lot more but I think these little gems make my point perfectly.
After one particularly bad appointment, when I was in Scotland, I was on skype with my parents to tell them about it. This basically involved incomprehensible explanations among the sobbing and blubbering. At that point, my Mum asked me, Do you think there's something wrong? And I said yes and that was enough for my parents. I really think that was such an important conversation, as short as it was, because it was basically me trusting my gut and my parents supporting me in that. Had that gone a different way, everything would have been different and when I think about that I really do realise how lucky I am to have had the unyielding support of my parents throughout this - and really, all through the years of Lyme issues too.
And I have had much support along the way from various friends, doctors and therapists but ultimately it was my gut instinct that I trusted that set me on that direction.
I could have chosen to believe I was going crazy, because it certainly felt like it at times. I could have decided there were so many medical people telling me there was nothing wrong that they all had to be right; but I could feel it. Like everything else in life, we have to choose our path, be responsible for our own decisions and I chose to trust in my body and what it was telling me.
When I had my first appointment with Dr K in Kentucky and he asked me to rate my pain, I told him that I really didn't want to be dramatic, but sometimes it was a 10; sometimes I would be curled up on my knees, crying and moaning in pain, with several pillows supporting my upper body, in attempt to take all pressure and weight off my shoulder blade because I couldn't get any relief.
He told me the best thing I had heard since I hurt my shoulder. He said:
"you are tough"
I told him I used to think I was tough until I had this injury but I didn't feel tough now. He told me that this injury, for reasons still unknown, causes the most pain and disability in patients that he sees (as an orthopaedic surgeon). He said that I was tough, because I had made it this far.
He also told me I was not crazy. He said it did not matter what any other doctor or medical professional had said, or implied: my pain was real; it was severe; and it was extremely disabling.
Then he told me the recovery would be tough too, and at that point all I could think about was that this kind, caring, compassionate, gentleman of a surgeon was going to fix my shoulder. I just couldn't imagine it could get any worse than it felt at that point.... oh how naive I was!! How blissfully ignorant. I suppose we are lucky we cannot see what is in front of us... However, even knowing what I know now, I would have made the same decisions - ultimately, it needed fixed.
And now, as I continue to struggle my way through my recovery, facing a new challenge with every attempted 'new' movement or exercise (or generally each new day), the best advice I have been given is to trust my instinct. When my body is ready to increase the reps, or push the stretch a little further, or hold it a little longer, I will know. Yes, it means testing it every now and then and trying to push the boundaries, but I have to truly listen to my gut telling me whether it is the right or wrong thing to do... because my head always tells me to push it a little bit higher... faster... stronger. And as much as I hate to disagree with that, going with my gut is what's been giving me results, slow as they may seem.
I chose this song today because I love the words and they really resonate with me (as I guess might be obvious from the rather long blog post I've just written!). For me, it conjures up all sorts of images, particularly of an inner conscious (instinct?!) giving guidance; reminding us that we are strong. We all have it within us to be strong; we have to trust ourselves; to go with our gut; and to never ever let anyone take that inner self-confidence away from us.
"The Voice Within"
Young girl, don't cry
I'll be right here when your world starts to fall
Young girl, it's all right
Your tears will dry, you'll soon be free to fly
When you're safe inside your room you tend to dream
Of a place where nothing's harder than it seems
No one ever wants or bothers to explain
Of the heartache life can bring and what it means
When there's no one else
Look inside yourself
Like your oldest friend
Just trust the voice within
Then you'll find the strength
That will guide your way
If you will learn to begin
To trust the voice within
Young girl, don't hide
You'll never change if you just run away
Young girl, just hold tight
And soon you're gonna see your brighter day
* * * * *
Life is a journey
It can take you anywhere you choose to go
As long as you're learning
You'll find all you'll ever need to know
* * * * *
(Again: I don't own any music/ videos etc. All linked to Youtube and artists accredited)
I also love the line about life being a journey. I have many quotes about this and I truly believe this now. I have learned so much and been so many places (physically, mentally, emotionally, psychologically) in the last eight years that I never anticipated, so I have completely accepted that is life. It's all about the journey.
Life is a journey, not a destination
~ Ralph Waldo Emerson