It's been a while since I've talked about pain on here. I'm not sure why, as I'm happy to discuss it. It does help sometimes, although there can be occasions when it makes people feel awkward because they want to offer help or comfort, and I'd rather not make people feel awkward. About my pain, obviously. When it comes to any other topic relating to spinal cord injury, then I view making people feel awkward as my sworn duty.
As part of my 'Mission To Explain', I have decided to offer this 'Mission to ExPain'. Get it? Get it? Here are a few thoughts about living with chronic pain that may help to shed some light on what this entails.
1) Not all pain is the same.
1a) Some is useful.
If you hit your thumb with a hammer, your body reacts in a series of ways: Your thumb will immediately swell to the size of an apple and pulse alarmingly, while you leap two meters into the air and hover long enough to let out an ear-piercing screech. No, wait... that's only in Tom and Jerry. Instead, your nervous system will send a flurry of signals towards your brain. As these signals pass along your spinal cord, they will compete with all of the other sensory information traveling along similar pathways (the feeling of your shirt sleeve on your arm, the warmth of the sun on your hand, the recently dropped hammer hitting your toe, etc) and will be vetted for importance. Your body may even take remedial action before your brain receives the signal, by initiating a 'reflex' response in the form of sudden withdrawal of the injured area from the source of the injury.
In this scenario, the pain serves a vital function, in warning us of a threat to our well-being and demanding action. This is a 'good thing' especially if the stimulus has not gone away, e.g. your trousers are on fire, there is a shark hanging off your foot, etc. as it gives us the opportunity to try 'not to die'.
1b) Some isn't useful.
With chronic pain, the signal traveling to the brain may be caused by 'static' due to nerve damage, or might just be the result of the pain 'gates' being unable to differentiate between the warmth of the sun and the trousers on fire scenarios and attaching the same significance to both. It might even be the nervous system trying to find a method of communication where the usual channels are no longer open. For example, one of the hardest aspects of my ongoing battles with urinary tract infections is that the first signs of a flare up always coincide with my hammering foot long, red hot knitting needles into my thighs (this is of course a figure of speech). I know something's wrong without necessarily knowing the exact problem. I also live with pain that is caused by the nerve damage at the site of my spinal cord injury (neuropathic) and pain resulting from problems associated with sitting all day, such as the stiffening of muscles and shortening of tendons and ligaments (musculoskeletal).
Chronic pain is often defined as any pain lasting more than 12 weeks. This doesn't mean every second of every day, but certainly at some point in every waking hour in my case, and it's been more than 11 years.
2) I can feel it in my bones.
Yes, it's the weather, and I know how ludicrous this may sound. I also know that there is scant scientific evidence to explain the phenomenon, but the weather seems to have a bearing. Cold is known to trigger greater instances of spasticity (or involuntary flexing of the muscles) and certainly can increase my base levels of neuropathic pain, but wet weather (or perhaps the low pressure systems more commonly seen on rainy days) also has an impact. I know this, because it's pissing down right now, and I'm on my second Tramadol. Which brings me to point number 3:
3) The drugs don't work.
As The Verve pointed out, 'The drugs don't work'. Well, that's not strictly true, but to describe them as working needs qualification. For a medication to be licensed for management of chronic pain, the threshold for success is lower than for the treatment of other conditions, and even if it is judged effective, it won't work for everyone and even those who have had success are most likely to be describing a reduction in pain rather than its elimination altogether. In mt case I take Tramadol for the worst of the musculoskeletal pain, and a tricyclic anti-depressant and an anti epilepsy drug for the neuropathic pain (both at a relaitvely low dose, but it took me about 3-5 years to get them down to such as there are withdrawal issues).
As a pain management consultant once explained to me, it is possible to make anyone's pain go away. It's just a question of how conscious they will remain. I certainly felt some benefits in terms of pain levels from medications that rendered me close to incapable of cognitive function. Fun for a short while, but not a long-term solution.
4) Chronic pain is more common than you might think.
Around two-thirds of people with spinal cord injury experience chronic pain. This may be associated with the original injury or the result of the extra burden borne by the shoulders.
In the wider population,. the WHO estimates that around 20% of adults live with some kind of chronic pain condition.
5) Sleep is a valuable commodity.
Sleep can also be illusive. For me, when I get to the end of the day and lie down, I experience about twenty minutes of severe pain in my legs. This is partly the change of position and the relaxation, but also the common experience of the switching off of distraction causing whatever was masked to come to the fore. The extra challenge is that the only way to get past this for me is to allow the pain to build to a peak and then subside. That means not wincing, clenching muscles or generally squirming. The problem is that if I'm not tired enough, this can go on for much longer, but if I am too tired, it can be hard to find the mental energy to be able to let go and ease into the pain.
6) Some pain is worth it.
If I train hard at basketball, then I will be in a lot of pain immediately afterwards and probably the next day too. But for the two or three days after that, base levels of pain certainly improve, not to mention the other health benefits of staying active, etc.
6) Pain is not always visible.
For many people living with debilitating pain, this can add to the problems they face. People will often find it hard to get past the 'well they look OK to me' voice in their head when it comes to understanding or offering support to someone with a chronic pain condition. In my case it's fairly obvious because there are occasions when the pain just demands my attention. I know that this can make people feel awkward, and they might say, "Is the pain really bad?" Yes. "Is there anything I can do?" Not really, except maybe don't mention it, and ignore the fact that I am squirming in my chair, frowning darkly, huffing and puffing or punching myself repeatedly in the thighs, trying to understand how my unfeeling legs can also also somehow create the sensation that they are being used as a knife-block.
It's hard for those close to the person with chronic pain.
I know that I am sometimes irritable and short-tempered with those close to me (therefore, if I am rude to you, consider it an honour. Unless I have just met you and you are an arsehole), and this actually makes me feel worse. As well as my having to learn to live with my chronic pain, I resent the fact that Spike also demands that my loved ones have to learn to live with me.
7) Swearing helps.
I mean, fuck it, that's just a universal life lesson, isn't it?