In July 2010, due to having severe osteo-arthritis in my left knee, I was advised to have a total knee replacement.
Prior to the surgery I had a career working in child protection. This, coupled with family and social commitments, meant I had very little time to myself. I am a wife, a mother, mother-in-law, grandmother, a great grandmother, daughter (my 90 year-old mother is currently in an aged care facility), sister, friend − and the list goes on. I was involved in many community activities and had lots of hobbies which kept me fairly active.
I had my right knee replaced some six years earlier and after six weeks had recovered sufficiently to return to work and normal activity. This was not the case with the second surgery, however. Instead of the post-operative pain subsiding, four weeks later I was admitted to hospital again with severe, non-relenting pain in my entire left leg. My leg was swollen, hard and discoloured. A few days into the admission I was diagnosed with Complex Regional Pain Syndrome (CRPS) and so began the roller coaster ride which has impacted on all areas of my existence. I had never heard of this condition and a nurse in the hospital gave me some information she printed from the internet. I could not absorb the information − all I could focus on was the fact that there was no cure for CRPS. Anger, shock and despair were just some of the feelings I was experiencing. These feelings later changed to a sense of overwhelming loss.
At this stage I was referred to a pain specialist and I had several spinal blocks, was placed on heaps of medications and spent a couple of weeks in rehabilitation. These strategies were not as effective as anticipated so the pain specialist decided I would be ideally suited to having a spinal cord stimulator inserted. This should have been straightforward but the trial was not successful as the doctor was unable to implant the leads due to the arthritis in my spine. After much discussion it was decided to proceed with the implant of the stimulator and that I would have a laminectomy to place the leads. At this stage I was still expecting the doctors would be able to come up with the ‘magic answers’/treatment which would give me my life back…it was not to be. The stimulator was implanted but the electronic signals seemed to exacerbate rather than lessen the pain. Several attempts to come up with a suitable stimulation ensued to no avail.
At this stage the doctor suggested I see a psychologist. At first I was horrified. I thought that he did not believe I was experiencing the high degree of pain that was evident. I went along to the first appointment with some level of trepidation. However, this has been the signal best intervention I have undertaken. The psychologist talked about and explored with me the high degree of grief and loss I was experiencing and once we had resolved many of these issues we began to explore mindfulness as a way of dealing with the pain. I am sometimes able to use this form of meditation to deal with the pain when it is at its worst.
I am often asked what I have learned through all of this. I have learned that there is a distinct lack of understanding about chronic pain both at a medical and community level. I experience pain all day, every day. Some days are worse than others and sometimes I am unable to wear shoes or clothes that touch the parts of the body that are affected by this condition. You see, the CRPS has spread. It is now manifested in the entire left side of my body, including my face and scalp. I have patches in my right leg, foot and arm.
I have learned that my husband is more wonderful than I could have imagined and is a very supportive partner, for which I am very grateful.
I have learned that people know very little about this condition which h been around since the American Civil War.
I have learned that each day is a new beginning and it does not matter if the exhaustion is so great that it means I have to rest on the bed after having a shower for instance.
Luckily not all days are wretched. The pain in my case fluctuates. On a scale of one to ten some days the pain sits at around 5 or 6 and about 50% of days the pain is off the scale…meaning it is more than a ten. These are the days when it is hard to maintain a positive focus and move forward − but I can and I do.
I have also learnt that ‘it is what it is’. Each new day is a blessing even though the quantum of the pain is immense but I try and remember that is just the way things are and ‘get on with it’.