As
Australian National Chronic Pain Week comes to a close, I wanted to share my story...
Chronic Pain... no one really understands its severity
and its effect on your life, unless they are sufferers themselves. Not only
must you live with ongoing chronic pain on a daily basis, but you must also
grieve the loss of so much more; the loss of your old life, your
productivity & often the ability to work, your independence, your friends, (sometimes even your family)...
Amidst intense feelings of isolation and anxiety, you try to
make sense of the life you have lost. You grasp at threads of hope that
any new treatment may be "the answer" to regaining some sense of
"normality". You become a master of disguise, an expert in the illusion
of appearing "fine" when, in reality, you feel as if your life is unravelling.
Effective communication is difficult. Firstly, because Chronic Pain is so
grossly misunderstood, and judgement is often a product of this
misunderstanding. Secondly, some of the medications used to treat certain forms
of Chronic Pain can cause severe "brain fog", which often affects
"word memory" and makes articulation difficult.
I am a 50 year old "Chronic Pain" sufferer. According
to my medical team, my pain story is a "very complex" one as I suffer
from numerous conditions, many of which are totally unrelated.
I was born with the gene HLAB-27, including a strong family
history, which made me susceptible to Axial Spondyloarthritis; a
degenerative autoimmune inflammatory arthritis that mostly affects the spine
& sacroiliac joints... I was diagnosed at age 20. Aside from the characteristic spine and sacroiliac joint pain, bulging spinal discs and some knee
& shoulder surgeries, I was well treated and had
successfully learned how to deal with the chronic pain flares of the disease. I
raised my children on my own and worked full-time to support my family. That
however isn't my only chronic pain condition... I also suffer from Chronic Neuropathic Pain Syndrome and Complex Regional Pain Syndrome (CRPS).
In November 2009, I had an "at fault" car accident... In an instant,
my world was to be changed forever. I sustained joint injuries to my neck, shoulder,
arm, hip and leg, including nerve injuries down my entire right side. It wasn't
entirely evident at first, but a few months later, it was very clear that
things were much worse and more long term than originally thought. Due to the severe
nerve injuries from the car accident, I developed widespread Chronic Neuropathic Pain Syndrome and, more recently, I have been
diagnosed with lower limb Complex
Regional Pain Syndrome (CRPS) after
surgery to my right foot & knee in November 2014. Both of these conditions
are complicated by my Axial
Spondyloarthritis.
I was forced to leave the workforce, as it was hard to get
time off work for my treatment and it became more and more difficult to drive
without extreme pain due to my injuries. My doctors encouraged me to apply for
a Disability Pension. I didn't think I would be approved, but due to the nature
(and number) of my conditions, I was approved immediately. It took almost 2
years to gain the more specific diagnoses and to find the best specialists to
treat my conditions.
Since November 2009, my life has changed dramatically... countless daily medications, regular weekly medical appointments/treatments, numerous regular tests, x-rays,
scans and MRI's, 6 surgeries and tens-of-thousands of dollars in
out-of-pocket expenses.
While I may look normal on the outside, the reality of the
combination of
Chronic
Neuropathic Pain Syndrome and
Complex Regional Pain Syndrome is that my central nervous system is basically at war with
itself. This makes treatment extremely difficult. My entire nervous system has
become highly sensitive to stimuli from inside and outside my body; my body is
in a constant state of severe burning, tingling & throbbing pain, including extreme
sensitivity to even the lightest touch.
In addition to the above, I also suffer from Labile Hypertension, Prinzmetal's Angina (Coronary Artery Spasm),
and I was recently diagnosed with Coronary
Artery Disease (genetic, not dietary related).
I have a large care team consisting of GP, Musculoskeletal
Doctor, Pain Specialist, Rheumatologist, Cardiologist, Neurologist,
Haematologist, Shoulder Surgeon, Knee & Foot Surgeon, Spinal Surgeon,
Physiotherapist, Occupational Therapist & Psychologist. I have lost much of
my independence and I am unable to drive more than 15 mins from home, once or
twice a week. It has been a challenging journey, but I am blessed to have such
a great medical team who are all on the same page. I am also blessed to have
the support of my wonderful husband and some of my family.
One of my toughest struggles has been coping with the unnecessary judgement from others due to lack of knowledge and understanding.
When your friends or loved ones don't understand or comprehend, it can severely impact relationships and lead to isolation. The most difficult task is to successfully encourage those people to educate themselves about your conditions. It's not pity you are after, but merely
love,
understanding,
compassion and
acceptance.You are struggling enough to reconcile and accept the difference between who you once were and who you are now with your current abilities; you don't need the pressure of unrealistic expectations & judgement from others.
"Before you assume, learn the facts.
Before you judge, understand why.
Before you speak, think." ~ Unknown
Other than the medications and treatments of my medical
team, there is one thing that has been invaluable to my life... GRATITUDE.
Any time I find myself in a negative state of mind, I bring
my mind back to the things I am grateful for and the blessings I have in my
life. Although I have lost much, I still have more! For that I am truly
grateful!
