EIMEAR KEARNEYhas been suffering from chronic neuropathic pain since being burnt in a house fire 10 years ago
TEN YEARS ago, I was badly burnt in a house fire and sustained full thickness third-degree burns to 26 per cent of my body. I was in bed at home when a mobile phone charger that had been plugged in over the weekend overheated and set fire to my bed. My sister, who was only 16 at the time, helped me get out of the house and I was taken to the burns unit at St James’s Hospital in Dublin.
The following three years were spent in hospital undergoing extensive skin-grafting surgeries and fighting infections, or at home trying to deal with the trauma and come to terms with the injuries and horrific scars left on my body.
The next three years should have been spent rebuilding my life. I tried so hard to do this but instead of feeling stronger and more able to participate in daily activities, I began to feel more intense pain with seemingly no physical explanation.
During these years, I experienced some of the worst days in my life. Were it not for the constant support of my family, close friends and a wonderful psychological service, I would have never made it through those dark times.
As a result of the burns and multiple operations, the muscles, tissue and nerves in my body had become badly damaged. And five years after the accident, I was finally diagnosed with chronic neuropathic pain disease.
Living with chronic neuropathic pain can be a sad and lonely existence. The stabbing, stinging and shooting pains that constantly radiate throughout your whole body like electric shocks start to take over and control your life.
Your body does not belong to you any more. It won’t function in the way it should or used to, it fatigues quickly and sometimes feels like it will shut down completely.
At first I tried to fight my pain as if it was an angry beast living within me. I tried to ignore it and would become stubborn with it, not wanting to surrender to it. I tried to continue with my life and my normal activities. This, however, would only last for so long before the beast would come back with a wild vengeance, leading to days or sometimes weeks of intense pain flare-ups, unable to move off a couch or get out of bed, in a zombie-like, drug-induced state.
These vicious cycles of over and under activity continued for a few years.
Loss became a big part of my life. I had lost so much – physical capability, the capacity to feel good about myself and to think positively.
I lost my appetite due to the massive amounts of pain medication taken on a daily basis. I lost any form of a regular sleeping pattern. I lost my job in 2008 at the age of 30. The loss of my identity as a competent, dependable member of the work force was worse than any financial loss I had experienced.
I felt I had lost my worth to society, which, in turn, led to the loss of self-confidence and self-esteem.
The loss of social interaction as a result of living with neuropathic pain was devastating for me.
One of the most annoying and demoralising aspects of living with neuropathic pain is the lack of recognition by society. I can appreciate that friends and family might not have much knowledge of the subject but in the past some doctors have even tried to suggest that the pain was imagined by me, it was all in my head and I was just depressed.
The sad thing is that I was starting to believe them, I became so angry and stressed out by it.
Thankfully I was lucky to find help from a caring and amazing group of people, who together form the multidisciplinary pain management team at St Vincent’s Hospital, Dublin.
They understood what was happening to my body and assured me that I was not imagining the symptoms associated with neuropathic pain. Finally, I felt the first stirring of hope.
Their pain-management programme introduced me to a routine of exercise, relaxation, physical activity and discipline. I became aware of the importance of a balanced lifestyle, the huge risks of under- or over-activity, not only to my body but also to my emotional wellbeing.
I found a word that is now part of my everyday vocabulary and has also become a way of life for me. This word is pace. In order to live with neuropathic pain and not just exist, I need to pace myself in every activity, task and chore that I do. I need to find my own individual pace for everything, take breaks regularly and always listen to my body.
The beast still lives within my body and is only too happy to remind me through the medium of excruciating pain to find my pace again. I have learnt to co-operate with it, we are not friends but we are not the bitter enemies we once were.
In conversation with Michelle McDonagh
CHRONIC PAIN: THE FACTS
One in five adults in Europe are living with chronic pain. Chronic pain has been described as pain that lasts for more than three months and can be unbearable, making everyday activities difficult and, in some cases, impossible. Research suggests that many people affected by chronic pain could be suffering in silence. This serious condition continues to be misunderstood, misdiagnosed and inappropriately managed, according to Chronic Pain Ireland (CPI).
Can You Feel My Pain? is a European health-awareness campaign developed by Pfizer Limited in collaboration with CPI and other patient and citizen organisations across Europe. They are asking people to sign a bill of rights which would see chronic pain accepted as a condition by the public and employers. See chronicpain.ie
