Saturday, July 25, 2015

Australian National Chronic Pain Week 2015

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!


Michael S-B said...

Well written, Liz. I wish we could take this and put it somewhere that it would actually be read by most of the people we know. You are not whinging or complaining. You are certainly not seeking pity, as you stated. But you deserve understanding, love and support. You need to not be judged, but to have those you love seeking to comprehend and to accept you as you now are. I certainly do!!

I love the photos you've chosen for this post. They speak volumes, fit perfectly and are really beautiful.


Bas. said...

geweldig zoals je dit kunt verwoorden en dan ook die orachtige beelden erbij.

Unknown said...

So thoughtfully written, Liz, and I am so very sorry for all you have gone thorough, and are going through. I hope that many, many people read this post. It is truly so important to those who suffer from chronic pain.

You have a wonderful weekend, my friend. xo.

betty-NZ said...

This is a very lovely and informative post. I know many people with invisible illnesses and education certainly is the key. Finding things to be grateful for would definitely be a plus amid all the pain. I will be praying for you.

Get Your Lens On said...

Well said Liz and I hope you continue to enjoy your photography to help you take your mind off the pain and to give you joy



Cheryl50 said...

So glad you have the support from your loving husband Liz. Chronic pain is very isolating, especially when you are so good at hiding it. Be proud of who you are,in my books you are a kind, beautiful amazing talented woman, who I greatly admire. blessings to you beautiful lady. Xo

diane b said...

You may have lost much but not your ability to take stunning photos. It must be awful having chronic pain. My backache becomes insignificant when I read your problems. It is a shame that not all people understand how debilitating chronic pain can be, nor understand the problems associated with it. I feel the same about depression. People don't understand how it effects people. "Snap out of it" is such a dumb thing to say.

Becky said...

Liz, this is fantastic! I'm so impressed with how you've chosen to focus on gratitude and growing your passion for beautiful photography. It is incomprehensible to grasp all of the pain and illnesses you are dealing with. I think most of us cannot even let ourselves think about it, for even that is too painful.

Thank you for writing this piece as well as sharing some of your incredible photographic art as part of the art of writing.

I hope this is seen far and wide. So many people are suffering and you're an inspiration.

It is such a joy to see the photos you create and to know you're choosing to have fun rather than curling up and giving up.

Thank you,
Becky Henry

TexWisGirl said...

bless you, liz, and those that fight the fight alongside you.

Unknown said...
This comment has been removed by the author.
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