It's impossible for me to articulate exactly what it is that living with centralised pain means. Like with most ailments, there are good days and bad. Sometimes… days turn into weeks, months and even years.
As this became a part of my life I found myself comparing a real pain to what I imagined a certain sensation would feel like. Early on, these descriptions were commonplace and uninspired. I recognised that vacant glaze in the polite eyes of my colleagues, friends and family. After all, there really are only so many times that you can hear someone recite, “Not great today” or “still in a fair bit of pain” before they no longer wish to hear how you really feel. The sad, helpless tilt to the head and the inward lip pucker that shows sympathy but little comprehension. The drama queen in me is tempted to shock you with wonderfully descriptive soliloquies in response to some inane comments that have been passed… You: You look tired. Me: Do I? I guess that’s because I didn’t get much sleep last night and when I did, I dreamt that I was an unwilling victim in a medieval torture chamber. I may have woken up screaming but can’t be sure, I was wet with sweat because I have to keep my electric blanket on all the time to alleviate the bone chill sensation. I was in too much pain to get up and take painkillers and so I just lay there for a couple of hours contemplating the merits of driving off a cliff.” You: Isn’t there any medicine that would help? and/or Do you really need all that? Me: I take medication, in all honesty, I swallow an average of 10 to 16 pills a day. Does that sound excessive? Well, imagine that you had the sensation that a small rodent was running under your skin. It's little claws wrenching at the muscles and plucking at nerves. Then picture, for just one damn minute that the rodent forces itself in between your ribs. The selfish little shit starts stretching and tugging on your intercostal muscles causing a muscle spasm that makes you think that you are having a heart attack; or it burrows into a muscle like a dog in a pile of blankets, scratching and pawing around in little circles before finally settling down in the bunched up tight mess that it has created. Now that the rodent is asleep a new tormentor awakens. Using a liquid nitrogen Captain Cold wanders around maliciously freezing the odd bone or two with one hand while using a pick axe to shatter, pierce and chip some of these bones - just for giggles. While all this is happening you are suddenly distracted by the invisible 10-ton truck has just pulled up onto your sternum instantly removing your ability to inhale and, or exhale. Now, please, try to imagine that the only way to get all this to stop is to chug a handful of painkillers, anti-inflammatories, muscle relaxants and anticonvulsants. You: You sure lie down a lot! Is reading and watching Netflix all you do? Me: Please refer to the monologue above and let me know… If your body did crap like this would you be moving around for fun? My house is tidy and my family is fed. After a day at work, my body puts on a little protest. This is on a good day. On a good day, I sit and stand at my desk for 8 hours. By 5pm I have allodynia (heightened sensitivity) to anywhere my clothing does more than touch my skin. My bra feels like barbed wire cutting into my flesh; the waist on my pants (which are not tight) has caused an ache that is akin to a stitch but circles my waist; even my socks have caused a swelling that would make you think that I had tight elastic bands around my ankles. So yes, after a full day I need a little lie-down. If I lay there without something to distract my brain then all these sensations would throb and hum with malevolence. I thank God every day for Netflix and books – they are the saviours of my sanity. Do I aggrandise the situation? Would it make you understand? No, it isn’t like this every day but if I am having a bad day then this is really what my body feels like. You: You sure do drink a lot of coffee! Me: Do I? Well, perhaps that is because for me a good night is six hours sleep or because the medication that I take is strong enough to knock out an elephant. I do not partake of alcohol with any regularity nor do I smoke. I do not over-medicate in the way many with my condition do. I still hold a full-time job that I perform pretty well and so I really do think that as far as vices go, coffee is not such a bad one. I know that I can be morose and occasionally a bit snippy but the last thing that a person in pain wants to hear is: You: Wow, you sure are grumpy! or What’s eating you? Me: Let me adumbrate just how much things suck inside this vessel (my body) at the moment by explaining some little-known facts to you. My neural pathways are damaged, occasionally I receive a “confused” pain signal for something that is only a remembered pain – the sensation is exact in all its vividness - bar one crucial fact - it is just a memory. Could you even conceive of an existence when you wake up feeling like a bird who has had her wings ripped off, or would you endeavor to walk around with the sensation that you have been chopped in half and then glued back together (badly) simply because you slept in an unfamiliar bed, or carried a bag of groceries, or some other equally frivolous action or even inaction. Do you have the vaguest idea how difficult it is for me to ask for help? Can you visualise how humiliated I feel when I cannot reach my own foot, to tie my shoelace or cut my toenails? You probably cannot. You probably think that because I am in pain all the time that I should just be used to it and get on with things. Or that I should “push through” and “force” myself to do more. Well, if we could swap shells for just one month and you could carry mine and I yours, then perhaps we would have more tolerance and readiness to help each other. Oh, I know that I have my faults too but I can still remember what it was like to be “able”. How do you suppose you would cope if you had constant but varying levels of pain? At this point, my eyes swim with unshed tears because I am jealous of you and frustrated with you but I would never, ever, wish this upon you. Not for a day. Then I would smile at your shocked face, take a deep breath and ask you how things are going for you. I have limitations that on occasion make me feel sick – like I have a body flu; or disabled – because I have difficulty walking, standing and, or sitting. Centralised pain is an invisible illness that makes you feel so much older than you really are and infinitely less able than you really should be. The worst thing about it, though, is that it changes all the time and so it is impossible to get used to. Please don’t misunderstand me, I am not actually after pity, nor am I trying to shame you for not knowing how to behave. All I want is a little tolerance and understanding, some empathy and encouragement. Chances are that even if you could guess what I want or need - I will still get frustrated. That isn’t a response to you - it is a response to my own limitations. Self Portrait: Pain swirled around her like the fine, clingy gossamer threads of a spiders’ web. Occasionally brushing against her, then sticking to her over-sensitised skin. Frustrating to pinpoint and near impossible to grasp and remove. She found herself constantly twitching, squirming or brushing her hands against what appeared to be phantom tickles and irritations. As the bus driver stomped on the brake, yet again, she paled. Her left hip felt shattered, eradicating the spiders’ web in a surge of ice-cold burning agony. Her breath caught and the mask slipped and pain registered for just one moment. She fought to remain calm as a knife buried to the hilt, smashing the breath out of her in a whoosh! Tiny beads of sweat appeared on her waxy face as she drew in a slow shaky breath. It was not lost on her that to some she probably appeared as insane as she felt. Her response to these sensations was often almost impossible to disguise. But, she hid them as much as she could. Surreptitiously she tugged her mask back into place, stoic in her determination to appear normal.
