I am writing this at 6.20am after a night without sleep. It was the forth night were sleep was an impossible goal, all because of chronic pain. Pain has been a part of my life since the moment of my birth. Six weeks after I was born it was discovered that I had cancer and I have since learned that it is very likely that the cancer started growing during my gestation, so the first sensation I experienced was probably pain. When it's has been a part of your life for that long you develop a very high pain threshold, and I know I can put up with levels of pain most other people would find incapacitating. I live with a permanently fractured ankle is an example of what I mean, as I rarely even notice this unless I foolishly make the fracture worse in a vain attempt to access somewhere not designed for my wheelchair. "What's that?" I hear you say, "a wheelchair? Then surely you can't feel your ankle?" Well actually I can. I have almost full sensation in my lower body and the spinal injury that led me to require the use of a wheelchair only impacted on my motor function. I can't walk, but I can feel my legs. I could break into a detailed explanation of the ins and outs of spinal injury, but I don't want to get side tracked. I want to talk to you about pain.
Even though I have my fabled high pain threshold, I regularly have periods where my pain either gets much worse or a new pain raises its ugly head. This is when I find it difficult to cope, especially at times like now when I am unable to sleep for many days because of just how bad the pain is. Sleep really is the ally of anyone confronting chronic or serious pain. Just a few hours of sleep can give you the strength to carry on fighting. After only a day or two with no sleep you find your defences weakening to a dramatic level. As I approach my fifth day without sleep I must admit I am finding the thought of battling my way through until bed time a daunting concept.
You may notice I use words like fighting, battling and defences. I do so as when you are in the grip of very high levels of pain you really feel like you are at war. You are fighting an alien interloper, called pain, who is attacking your body. Pain takes on a personality and becomes an entity separate from you. One who is trying to destroy you and your will to continue fighting. As night after night passes without sleep you find yourself loosing the strength and capacity to carry on your battle of wills with this invader. The longest I have been kept awake by my enemy was ten days, at which point I just passed out from exhaustion. At least it gave me a chance to recharge my battle weary mind.
When you reach that point where you find your defences weakening, you also find yourself stunned at how modern medicine is still unable to stop pain when it is this bad. They have drugs that can cut it by about half, but they also impact on your ability to function and are very addictive. Notice I say by half. Morphine, the gold standard in pain relief, can only claim to halve your pain and means you still have to face the other half through a drug addled haze. For some people this can be enough, especially if they have just injured themselves, but most chronic suffers soon find that opiates become less effective as time goes by. Drugs can only do so much, and I have found that at times when my pain reaches the levels at which I am least able to cope the drugs have even less effect.
Recently I tried a course of Mindfullness. This is a meditation and self hypnosis technique that has been modified to help with chronic pain. It actually works too. With some practice I found that I could use the techniques of mindfullness to battle pain. However there is a flaw. I find that for it work you need to concentrate and lend considerable thought to the process. Which is great when you are awake, but when it comes time to sleep as soon as your begin to drop off the pain breaks through. After a few days awake you also loose the ability to maintain the physical and mental wherewithal to successfully practise meditation of any kind.
In fact as I type this I am finding it hard to type or string together rational thoughts. Pain courses through my body a couple of times every minute and each attack lasts about fifteen to twenty seconds. This has been going on for around one hundred and eight hours now without let up. I must admit I feel awful and would do just about anything to end this battle but I will fight on until I triumph, or even just sleep. I will never win out totally. Pain will always be with me. All I have to hang onto as another agonising throb rips through my body is that at some point I will regain my control over it and become the master of my own body again. Until that time, I battle no matter how exhausted I am. That and wait until some clever researcher invents a new method of pain control that actually stops it dead. When that day comes I will be a front of the cue.
With that I shall return to the trenches and battle on. Come pain, bring it!