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 After my first child was born, I became withdrawn,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
