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!

Reflecting on Life

The year that was 2014, has brought with it many challenges both emotionally and physically. I once again went under the surgeon's knife twice, just as I did in 2013. I am currently over 8 weeks into recovery & rehab. Due to living with an autoimmune disease, Axial Spondyloarthritis, this greatly affects "normal" healing and recovery times.

I have also been given the prognosis, from a number of my specialists, with regard to my nerve injuries and the resultant daily chronic neuropathic pain:
"There is nothing more we can do but to try to keep you comfortable."
That is very difficult to hear after 5 years of searching for answers and trialing many new treatments! I have lost a lot of my independence, as I am unable to drive more than 15 minutes a couple of days a week without extreme nerve & joint pain in my neck, arm, right hip and leg. This hasn't changed over the last 5 years!
This week, I was diagnosed with a condition called Complex Regional Pain Syndrome (CRPS) in my foot, which I was made aware could be a side affect of my recent surgery.

Not a week goes by that I do not have 2+ medical appointments; weekly visits to my physio for rehab and also to my Musculoskeltal doctor who gives me the vital injections of dextrose into trigger points as well as areas of severe nerve pain. This treatment has been of huge value to my quality of life over the last 3.5 years. Some weeks I attend far more appointments than the usual two.

As I reflect on the year, I am saddened to discover that my current inability to work has resulted in being judged by some. Even sadder is that some of those people are family. These people don't see how my chronic pain affects me on a daily basis, nor do they realise the incredible frustration and feelings of uselessness that it leaves me with.

I'm not a lazy person. I worked very hard (often 2 jobs at a time) over the many years that I raised my children alone, in order to keep them in private schools, buy a home and pay a mortgage after being left with nothing when my ex-husband left us. During this time, I worked through the often chronic pain associated with flare ups of my Axial Spondyloarthritis, when at times it was severely painful to walk due to issues with my feet, hip and back. I continued to work for 4 months after my car accident in November 2009, in spite of the chronic pain, until my specialists told me that it would be advisable to stop working.

I tried to study part time at University in 2013, but had to stop as the travel and sitting/studying for hours a few days a week was impossible. It was at my specialist's advice that I give it away as it was "making my condition worse".

Some days, reflection is all that's on my mind. I've given up reflecting on the "what ifs" as it serves no purpose to wonder what life would be like without the accident. Now I wonder more how I can contribute to the family income, what I can do to be accepted, how I can feel better about myself...

I am grateful that I have the wonderful support of my husband of 5 years, who has been by my side throughout all this, for those in my family who have seen my struggles first hand and have been there to support me through them. I am also grateful to my wonderful medical team; my GP, Musculoskeletal doctor, physio, and the long list of other specialists and surgeons I see regularly.

I don't want pity or sympathy... I only want understanding and acceptance from my loved ones. I don't think that is a big ask.

May we all strive to show more love, gratitude, understanding & acceptance to others. :)