The first time I ever heard of the term Pain Management was February 2013, when I was lucky enough to meet my current Hepatologist. I had been in a great deal of pain and unable to get out of bed, unable to eat, to speak; I lay there, alone in my flat (while husband and son went in and out for work and school) for three days before being admitted to A&E for the first time. The Hepatologist I had been seeing for nearly seven years had seen me for the last time the week before as he himself prepared to be out on leave for 6 months. I had recently been diagnosed with acute pancreatitis while away for new year’s weekend in Norfolk. That was the start of my decline in health, but be sure, at King’s Lynn Hospital noone had ever heard of PSC, and because I don’t drink and did not have gallstones, my case was left with no cause. After seeing my long-standing doctor, he told me he would see me in six months and not to worry, everyone is entitled to a random case of pancreatitis in their lifetime.
Within 5 days of his absence I was admitted to 10N at the Royal Free, meeting my new doctor who informed me that I needed a new liver. During this first hospital stay I learned that when in real pain, there was nothing brave about withholding pain medication, something I had been doing for years thinking that I was building up my pain resilience; even thinking I was brave because of it. The nurses and doctors were both very clear that if I didn’t stay on top of the pain management, I would be the only one who would suffer. I decided there was only one thing I could do, and that was let go of any control over management of my disease, and pain, and to trust the doctors and nurses completely with my care. In practice, it became much more of a joint partnership, coming to decisions together based on my level of pain and understanding of the options, and based on me entrusting the doctor’s to make the final decision. I had never been in such a positive relationship with a medical team, and to this day the relationship within the entire team of people looking after me has evolved in this same way.
The past days have met me with a new threshold for pain, one that has required far more than pain medication to survive. It turns out that the new liver has been sitting in a pool of infected fluid with a large hematoma sitting on top of and oozing out from the wound. Yesterday when they tried to drain it, something went wrong and they inserted a wire to make a drain, but they pushed the wire too low and pierced through my peritoneal sac, going so far as to hook into my bladder causing the worst pain I have ever experienced in my life time. There I was, trying to chant mantra, crying from the pain, and screaming out like my old roomates, to “help me”, because I truly thought I was going to die.
Things began to flash in front of me, my son, chidbirth, my husband’s sweet face….I had never met the team of doctors doing the procedure, but as they worked to get me to the CT Scan to check if they had pierced the bladder, I kept returning to mantra chanting as my focus point, and it brought me a moment here and a moment there of calm. The procedure was abandoned for the day, and the doctors will try again to drain the wound this morning. This time, I will be under full sedation.
After the failed procedure, the pain management team (yes, there is a whole team dedicated to pain management) have changed my plan which has kept my pain level down throughout the night. I keep being told to not let the pain get too bad, to stay on top of it, as soon as I feel it coming back on to request more. In combination with focusing on mantra, I’m sure today will go more smoothly,
A friend called last night after the procedure and started to say that she had a difficult day, but nothing to complain about compared to what I had been through. I stopped her, wanting to hear about her day and the emotions she was going through. Each of us has our unique experiences of our reality and our perceptions of self and other. We all feel things differently, and what we feel is very real to each of us. There is no such thing as one life being more difficult than another, more righteous, more prayer filled, more painful. The only life we have to try to understand and relate to is our own, and who is to make a judgement about something as complex and subjective and intimate as one’s unique life path, or the concept of pain and dissatisfaction? We are all equally justified in feeling pain, emotion, frustration, but let’s not forget the good stuff out there. Happiness, joy and acceptance are all options to help us embrace how life could be now!; how life will be with a bit of practice, with a bit of LOVE infused from the inside out and from the outside in. I was given a little pin several months back that says ‘If anything good can happen today, it will.” Today, I’m putting all my money on the pin.