I must apologise, it has been a very long time since I last wrote anything. This was something I was worried might happen, and one of the reasons I pondered so long about starting this blog. One of the problems of living with constant pain is, that it has made me somewhat unreliable. There have been times in the last few weeks when the inspiration to write was there, but it was overcome by the pain problem.
Such is life.
I usually don’t like to talk about my disability (many of you know of my aversion to this word. I prefer the term ‘cripple’), it sometime sounds like self-pity, and pity is something I look for even less in myself than I do in others. There is probably a right time to talk about almost anything, however, and the time may have come for me to discourse on the subject of my disability, for the purpose of education, and the dissemination of knowledge.
At the risk of becoming repetitive, I would like to emphasise that I have a very positive, happy, exciting, fulfilling, and fabulous life, the only negative is a condition called ‘Chronic Pain Syndrome’ (a syndrome is defined by Google as; “a group of symptoms which consistently occur together, or a condition characterized by a set of associated symptoms.”). Being a syndrome, the exact cause of my CPS is currently unknown, but the best educated guess is that I have a fault in my central nervous system. It is also a somewhat invisible condition; you cannot tell how much pain I’m in just by looking at me. This, I believe, has led to some (often well meaning) misinformation about my condition.
First you should understand that I have two health problems, the pain itself, and the side-effects of the medication (for the last 18years or so, this has been from various forms of opiate, starting with codeine, then on to Fentenal, Oxicodone, and most recently Morphine). You have probably read about my ongoing efforts to come off the nauseating, constipated, mind-fuck that is morphine. It won’t become clear until I’m completely off the morphine, what the full side-effects of the new replacement (non-opiode) drug are, although for now the only downside seems to be nightly night-mares (not an insignificant side-effect, but that’s a subject best dealt with in a blog of its own).
Then there may be a misunderstanding about the nature of the pain itself. Some people seem to assume that the morphine takes the pain away completely. This is untrue, all the medication, old and new, does is simply control the level of the pain, bringing it down to a point when, at least some of the time, I can function, and have a life. Put bluntly, I have pain in my left knee every waking moment, the only variation is how much pain. If I’m well rested, and relaxing comfortably, the pain can be dull enough that I can happily read, or write a blog. Any activity increases the pain, and the more I do, the greater the pain. The greater the pain, the longer it takes to recede, when I eventuality get to rest.
Do you want to know how bad the pain can get? I’ll tell you a little story; a few years ago, I had to switch my primary painkiller from Fentenal patches, to Oxycodone tablets. The problem was, after stopping taking the Fentenal, it took three days for the Oxicodone to build up in my system before it started working. This led to the worse three days of my life so far. All I could do was roll around on my bed (for some reason, if I kept my left leg still, the pain would become unbearable almost instantly) moaning and occasionally screaming. I could not think, sleep, or do anything apart from suffer. For about three days and two nights all I perceived was agonising pain.
The absolute nadir of those 72ish hours was the start of the second night. Having already experienced one sleepless night, exhausted, and seeing no end to the pain, it was hard knowing I was going to go through the same again. Luckily, late the following morning the Oxycodone finally kicked in and I slept; if I hadn’t, my doctor was going to admit me to hospital to be sedated, because the human body can only cope with a certain amount of stress, and I was close to the edge.
It is hard to describe precisely what the pain feels like, but recently I came up with an enlightening way of getting the feeling across. When scientists want to experiment with pain, they have to find a controlled way of inflicting pain on people without causing permanent harm. A popular way of doing this is to have volunteers plunge their hands into ice-water, and see how long they can stand it. That painful feeling as your hand slowly freezes, is kind of what the pain in my knee feels like.
Or you could try a little thought experiment. Imaging that someone has kicked you very hard in your kneecap, and that you are rolling around on the floor, waiting for the pain to subside (but in my case, the pain never goes away). Now imagine yourself in that pain, but you have to stand up, walk, and get on with your life, how bad do you think that would hurt? Welcome to my life.
In some ways, I’m my own worst enemy. If I was prepared to give up on activity, be bed bound and increase the morphine to near comma levels, I could probably sail away on a comfortable opiate cloud, perhaps even pain free. I want a life, however, and so I have to balance activity with pain, plan my life so that I can enjoy it, then retire to recuperate when the pain gets too much. My pain specialist would call this planned flair ups.
About ten years ago I went on a Pain Management Course, for people who have no choice but to live with pain. One of the things they taught me was to prioritise pleasure. The idea was that, with flair ups and recoveries to account for, I should make the best use of the time I have when I can cope with the pain and do the stuff I want to do. You know me, I like to prioritise parties, festivals, and custard pie fights, however, even planned carefully, I can never do everything that I want to do.
I still spend an inordinate amount of time lying on my bed recovering, waiting for the pain to subside, so that I can go out and overdo things again. Since my mind came back I’ve been able to socialise more than I have in years, although I sometimes have to cancel at the last minute due to the pain (and I thank you all for being patient and understanding about this). All this recent increased activity has had a detrimental effect on my over all pain levels, I would prefer to be more comfortable than I am, but having a social life is more important to me than pain relief.
This is the pain I put up with every waking day, I have, however, learned over the years not to show it. I don’t want to bring the mood of the party down by talking about my health problems, and I’m having too much fun for anyone to pity me. I just wanted you to know that, if you don’t see a blog from me for awhile, it’s not because I’m ignoring you, it’s because I’m dealing with my personal pain problem.
I will promise you that I will be writing another, hopefully happier, blog very soon. By then I will try to transfer this blog to my new website @ bigmonkeycult.com. Check back here, and I’ll keep you informed.
Love & peace,
Zero