My story starts 25 years ago, with a trip to the hospital and a stay. My diagnosis was Acute Pancreatitis, a disease with one of its main symptoms and result of an acute attack is really severe pain. I would experience these attacks about once every 2 years until about 8 years ago. 8 years ago I started to get the horrible pain in my abdomen again, and although not as severe as during an acute pancreatitis attack, it was starting to effect my every day life.
During this early time, I had an acute attack of pancreatitis, and this time the pain did not dissipate as it had done previously, but stayed with me on a daily basis. This set me down the path of ‘Pain Management’, and being exposed to various methodologies to control my pain
The methods I choose at that time, was to use drug therapy in conjunction with CBT Training, Mindfulness and other mind ways to ‘distract’ myself from the constant pain. I also tried a nerve block, it was very uncomfortable and did not work.
The methods of pain management, except the nerve block, worked well and I was able to maintain a fairly normal and active life for 5 odd years. I with my partner, owned a gardening business and things were going well. Then one misty, wet day I was mowing with a ride on, on the side of the hill, when I lost control because of the wet, and the mower and I went over a 7 foot embankment together! Somehow my left foot got caught amongst the blades. The awesome skill of the plastic surgeons from Dandenong hospital, the rehabilitation, physiotherapists, and my sheer determination to get back to work asap, saw my foot not only being saved, but 16 weeks after, I was back pushing and riding my mower again.
However, my need for pain management during this time and since has become a major part of my every day life.
My return to physical work was short lived, with my foot and my pancreatitis to unpredictable for me to continue, so I changed careers back to IT, which was my early career.
However, my pancreatitis is now at a chronic point, as well as the pain. My partner and I separated and I moved back to where I grew up on the Mornington Peninsula.
After my move and break up with my partner, I found myself alone with my pain a constant. I was trying to establish myself back into IT, but my pancreatitis and pain escalated, and at one point I could not take it anymore. I decided that my family would be better off without me, and I would gain a permanent respite from all the pain in my life, physical, emotional and mental.
Thankfully one of my family sensed something and I was to recover physically from my action, and over the next year or so started to repair and strengthen my want to enjoy life and to milk every day for all I could. I have now participated in online and local programs to keep me exploring ways and means of containing my pain where I am able to manage now and for the next 20 years. The mental battle is still under way, and I have explored physical interventions like nerve blocks, drug changes and the like.
Pain is not like other illnesses! You cannot see a bandage, nor can it be measured by monitors, or cut out like a bruise on an apple. It very subjective, with each person’s pain threshold different! I am able to communicate my “Pain Score” to my doctors but I often question, is this all in my mind? Is there a way that I can break the cycle? Is my mind playing tricks on me? In some senses this is all true, and I believe that with the right combination of traditional therapies, like medication, and the training of the mind, in what ever way works for the individual, is the best method to gain the best quality of life.
I also believe that chronic pain is not like an injury, it really does not heal, and it will be a part of me for the rest of my life. It brings with it, a lot of worry in the medical community, because of the drugs that we need to have quality of life. The trick is finding the right combination for the individual, and the combination is all of the mind work added to the drug therapies.
There is also a lot of misconceptions in the community, surrounding the drug therapies we need. Often when I tell prospective dates, on the Internet dating sites, that I suffer from chronic pancreatitis and chronic pain, I often never hear from that person ever again. I'm getting to a point of giving up on finding a partner, because the rejections add to your overall mental health, and I cannot afford to get into that depressive cycle.
That line in itself is depressing, and I haven't mentioned it as yet, Depression!! It also plays a very major role in the chronic pain setting, in that it adds to your pain levels and distracts you from using all the coping skills you've learnt.
There is also the transition from being gainfully employed and independent, to being disabled and isolated. This is also a major part of my life at the moment. I'm a shy person in larger settings, and I have difficulty meeting new people, except for social media, but that also has its problems. In that you can get so immersed in others problems that you start forgetting yourself, and adds to the cycle.
At this point in the road of life, I'm searching for that elusive fix. I'm hoping for a spinal cord stimulator, in the hopes we can trick the brain into thinking the pain signals from my pancreas are not pain signals at all. I also am doing more courses to gain more knowledge so that I can regain some of what I've lost over the years to this disease.
It does seem from a patients point of view, that ‘Pain Management’, although it has been used in anaesthetics with medicine for decades, it is now only being recognised as another management tool, for the ongoing care of patients with chronic, disabling pain! We are now starting to see in most hospitals, a pain management team. However they are extremely stretched with resourcing, personnel, and research money. We are getting care, but it could be improved tenfold. We need more research!
This area of medicine is gaining momentum, but we need more help! We need more care, love, support and a quality of life where our pain does not push us to a point of desperation, and all patients have mechanisms available to them, so that we can again smile with life. The public also needs to know of the scope of the problem, and our challenges, so that we are not labeled as ‘drug seekers’, and we can gain money for support and ongoing care and research. Each hospitals ‘Pain Management’ department also needs this support, both publicly, monetarily and politically. Help is required on all levels with this complex illness.
Pain is a horrible, depressing, debilitating, isolating, and misunderstood!!
It takes a lot of strength to be able to live with it on a daily basis. Waking each morning my first question to myself is ‘I wonder how much it's going to hurt today’. Often it's there, and it has to be dealt with as your first port of call each day, and that is my story so far. My future is uncertain except that I will continue to strive to get the best quality of life that I can, so I can enjoy life and have a brighter outlook on my future.
Thank you for taking the time to read my story, I hope it brings a better understanding to our lives.