Anatomy of Agony

I have finally come out the other end of a period of chronic pain. Spending three weeks coping with a level of pain that meant sleep was impossible, driving would have been very inadvisable and even dressing became too difficult to consider has dramatic effects on both your physical and mental well being. Everyone who suffers from chronic pain has the same experience of this debilitating problem.

Now I have a usual level of pain, caused by a spinal injury, a dislocated right hip, trapped nerves and aging shoulders (one of the joys of using a wheelchair, your shoulders do much more work than they were meant to and so age more quickly). I am used to dealing with this, and have found ways of doing so. Yes, it can be annoying and can mean that I find myself less focused or easily annoyed on a day when the pain is a little more than usual. However, every now and then events conspire to create a massive spike in my pain levels, and then things really do go off the rails.

This time I fractured my ankle, tore a muscle in my back and thus caused a set of trapped nerves to become inflamed. This led to my sensation below my waist to become “hyper-sensitive”. Hyper-sensitivity is where all normal feelings and sensations are increased to an almost unbearable level. When it happens I find wearing socks and trousers an agony, so you can imagine what might happen when it combines with a fractured ankle. Stupidly I did all this when trying to find out if I might be able to go back into club DJ-ing. Proof that however much this government might be trying to get disabled people back to work, until the built environment is fully inclusive this ambition is going to be one hell of a struggle. Whatever this event meant politically, personally it was a period of hell.

It started as a niggle in my right ankle and within two hours had grown to a level of pain that had me screaming the house down. My poor neighbours, they must have thought someone was murdering me. It felt they were to me. Pain is strange. When it takes hold it almost has a physical presence. I know when I had broken my back for the second time in 1999, as my spine collapsed the pain took on a physical element. As the nerves to my toes where being crushed I was kept awake by what felt like rats gnawing at my feet. Of course I didn’t have rodents eating me, but what was happening was the brain read the different nerve impulses and tried to make sense of them. But not only do situations like this happen, but pain itself feels like a entity has taken hold of your body. Especially terrifying as I could not feel my feet at this time. I know have full feeling below my waist, but at times of extreme pain this is not a boon. Oh no.

I will admit I have a strange relationship with my body. It has been the cause of many problems in my life, and so I do tend to feel that “I” live in my body and we are at constant battle. It’s how I have overcome many illnesses and debilitating physical problems. I battle them and my body equally. It never wins. When this hyper-pain strikes it isn’t my body that is fighting me yet again, it feels like something else. Like an dark entity takes over and it is trying to break me using pain as a weapon.

All this might sound like it is taking on a spiritual element but it is more that the way the brain struggles to cope with situations like this are what has led to our need to find supernatural reasons and causes. I know there isn’t an evil spirit taking over my body, and that it is a purely physical function of pain, it does feel like you are battling something “other”. I am sure that this is something that evolved to enable us to fight back, by battling against this entity instead of our own bodies. And it is a battle. Many times in the last weeks I have found myself unable to continue. Yet continue I must, and did. I also won. I always have. I always will.

During the moments where I feel the battle is too much to continue, I have an insight into those people who want euthanasia. Yet I know in my heart I will prevail, and so it saddens me. During the huge internal battle against this pain monster, I regularly am struck with tragedy of those who want to die, and especially those who do. I know how easy it would be to bow out, and what a relief it would be too. But there is no way I will go without a fight. Once the battle is over I know I was right.

I don’t know why I felt I should write this blog. I just wanted to put out into the ether my thoughts on pain and how it effects you. Everyone I have spoken to who suffers from chronic pain has a similar experience of it. Those who have continuous chronic pain seem to cope better on a day to day basis, thanks to finding mechanisms of treating the pain via various ways, but they do find that the pain gets to them eventually, whether it is physically or mentally. I know I am lucky. I have these periods ever six months to a year, and while they are terrifying while they last, once they are over I can go back to my usual pain and my usual life. Yes even my usual pain does effect the way I live, but it doesn’t stop me dead.

All of us that has pain as part of their disability knows how little that is considered by the greater public. No one looks at someone like me and even thinks of pain. In fact feeling isn’t normally something people associate with paraplegia! Many conditions that are hidden disabilities have pain within them. One day I hope that the public, and especially the government, understand how pain effects ones life and might even start to find ways of helping us fight the spectre of pain.

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2 thoughts on “Anatomy of Agony

  • Remember your quote you gave when we had the session at Herts PASS? “Never let Knock backs get you down” Hey you remember that and hope that gives you some comfort my lovely friend!

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