Tuesday, 7 June 2016

Scoliosis awareness week - June 2016

To help raise awareness about #scoliosis, I am sharing a brief version of my journey. Enjoy!

I was born with scoliosis, a pronounced “s” shaped curvature of the spine. The severity of scoliosis is often measured in a Cobb angle as determined on X-rays. Mine was around 53/54 degres when diagnosed. Corrective surgeries at the ages of 11 and 16 straightened my spine with steel rods, pins and fusion (see pictures below). So, technically I have a straight spine but the restricted movement did result in long term chronic pain. I spent about 20 years in the medical roundabout trying every type of pain medication, seeing a blur of specialists/practitioners all in pursuit of an elusive cure or solution or even a reason for my pain. My general approach was to cram everything I could into days when I felt good, leading to days of pain because I had overdone it. I would ignore my pain and fight against it. I was often angry or ashamed that my body just kept letting me down. As I got older my flare-ups got worse and my ability to deal with them decreased.  I would become almost obsessed and consumed with my pain. My negative thoughts around my pain would escalate from a strained struggle to catastrophising and generalizing to a self loathing and hopelessness. I felt like I was always letting people down. I struggled with comparison between some self set idea of perfection (which was probably pain free) and the reality of daily pain. After my first child was born, I became withdrawn, depressed and drowning in a feeling of hopelessness. I was near rock bottom. So near I thought that my family would be better without me.



Enter my caring and insightful GP. He referred me to the Barbra Walker Centre for Pain Management at St Vincent’s hospital in Melbourne. After a 6 month wait and a number of sessions with their psychologist,  I was recommended to attend their 3 week, hospital-based self pain management course. I am not exaggerating to say it turned my life around. It gave me the whack-in-the-face wakeup call I needed. They supported me to come off all medications and learn techniques to deal with my pain. By accepting that pain was just a part of who I am, I was able to take control of my own health and wellbeing. I learnt how my negative thoughts around pain would amplify my pain experience.  I also learnt that a little exercise is better than nothing and that resting can often make the problem worse through deconditioning muscles due to a lack of activity. I became disciplined and educated enough to self manage my pain. This provided a long term solution when medical science could do nothing further to ease my pain beyond offering a bandaid (pill) solution. With the assistance of the clinic I came off all my pain medications (a harrowing withdrawal experience!) and have not had a pain killer in the past 6 years!!

Attending the pain management clinic changed the way I viewed my pain and how I responded to it. Up until this point I had let my pain rule my life. Now I use daily exercise and mindfulness to overcome the mental and physical challenges to self manage my pain. I have gained the strength and confidence to resume my social and day to day activities with confidence. I have become better at communicating my situation and my needs to my family and friends. I am more mindful in my daily activities to ensure I do not over do it. I break down activities into manageable chunks with scheduled breaks. This pacing technique allows me to do the things I want to do despite the pain on any given day and does not let pain dictate my activity levels. More recently, I have researched nutrition and its impact on my health. I have been following a whole foods healthy diet. I believe this was the key to unlocking that final piece of the puzzle. With the right energy in (good quality, nutrient dense real foods) I now have more energy and this gives me the strength and vitality to continue to manage my pain effectively. I also see a chiropractor and osteopath for scoliosis specific treatment and exercises. 

I also face a new scoliosis challenge. I noticed some "uneven-ness" in my son last year (aged 7). He also was diagnosed and has curves around 20 degrees cobb angle. He now wears a Spinecor brace to manage his curve so we can (hopefully) avoid surgery in the future. 

My story isn’t a perfect one and I’m still working on it. I have bad days and unhelpful thoughts creep in and sometimes I still over do it. But now, I don’t beat myself up about it, I just get up, keep moving because I want to be the best version of myself I can be, for myself, and for my family and friends. I want to share with other chronic pain sufferers that I’ve been down that road too but I want them to know there is another way. By accepting and taking hold of my pain I have become the one in control.  With this disciplined approach I have the power and the freedom to live my life the way I want to live it. The pain will always be there but my life is full and rich.


Come visit me and follow my journey at www.takenholdofpain.com

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