Sometimes I wake up in the middle of the night, sometimes I am lucky enough to sleep through it but know when I wake with deep exhaustion that the pain has still been there even if I wasn’t consciously sensing it until my moment of waking.
I was so hot and I could not cool myself down, and so so thirsty. Pain shuddered around my body, making its way sharply to my feet, that spasmed and kicked away the duvet prison that pressed hard like rusty nails digging through my big toes. My fingers are creaky and weak, my elbows and upper arms are uncomfortable and the muscles in my back are hardening like coal to diamond, and the resulting pain is just as sharp as that precious stone. I cannot reach my body, I cannot control my body, jaw locked, teeth grinding and pins and needles moving around like an unwelcome mosquito trapped just under my skin.
Pain has been walking closely alongside me for two months now and on and off for many years. But just as they talk about functioning alcoholics, or functioning depressives I am functioning through this pain. Or at least I am just about getting by to the outside world. But as I sit here trying to tell this story I feel my emotional distress increasing. I’m poking around on the internet, looking at health, pain, autoimmune websites and dodgy YouTube videos, trying to understand pain as a general issue and immediately tripping over upsetting things that push my button because they resonate with my feelings. But my intention for this blog was never to dwell on the pain that I am suffering with, rather look into pain as a phenomenon.
Pain, and I am referring to physical pain here, is the neurological response to something that has gone wrong in your body. Only that thing that has gone wrong may not be clear or easily treatable. Chronic pain and pain as a result of injury are two different things (although the latter can trigger the former). Chronic pain is long lasting and sometimes the exact cause is unknown. Chronic pain can also be caused y false triggers to your brain telling you that there is something wrong.
I started writing this post because pain feels like a heavy ball expanding and contracting from the inside of my body, sometimes bearable, sometimes not. However, as I continue to write I realise that I don’t know what I am trying to say and that is a good metaphor for how the physical difficulties are impacting on my life. It intrudes, uninvited and then forces itself to be the major focus because nothing else is do-able when it is there. I spent a fortune on osteopaths, massage, bathing in spa waters, because for those moments I can forget and I can rest.
The biggest thing with pain is that it is exhausting, which is yet another paradox of this thing – moving around stops it getting worse. Anyone who keeps up with my social media knows that I do gymnastics a few times a week. I often have to temper my workout because of restrictions in my hips and lower back, but being there, training is both a mental and physical tonic. But moving around adds to the muscle fatigue and the tiredness just becomes so overwhelming that I just want to lie down, when I do my back and hips seize and spasm and the circle continues.
This blog would be too long if I was to go into every detail that I wanted to explore so I will look at conditions that are linked to the type of pain that I am feeling in blogs later. It is also feeling too down beat right now and I don’t want to lead you into depression (which is one of the diseases associated with chronic pain). My goal right now is not to make you feel the way I do, although if you are someone who has this kind of ailment then maybe it helps that someone has articulated some of the things that you feel too.
A week ago whilst out walking with a friend who had recently suffered with concussion. We were forced to call the ambulance because she collapsed, feeling faint, dizzy, short of breath and suffering with pain in her head. Her pain was directly related to a fall on to her head and as it turns out is a bruise on her brain (a CT scan revealed it to be nothing worse and it should heal once given the rest it deserves, but regardless it is having major impact on her life and the way she feels right now). I ended up driving her to the hospital and in the car we had a chat about levels of pain. As a clinical biochemist she has an awareness of true medical terms and what they mean and she described three levels of headache: 1. Mild – it hurts but you can get on with every day tasks; moderate – you are unable to do normal everyday tasks but the intensity could be more extreme; severe – high intensity pain.
I couldn’t put my finger on how I describe my pain, I guess moderate would be the most accurate, it certainly impedes every day tasks and decisions. It does hit severe at times and no doubt drops to mild, one thing it doesn’t do is go away completely, unless I am dong the tasks mentioned above. Unlike my friend there is another factor that matters when the pain is chronic, and that is duration, pain for months at a time is exhausting, I wake up tired every day feeling overwhelmed about having to get up (and I am a morning person). Similar to my friend the pain is accompanied with the worry about what the underlying cause may be, my doctors say it is autoimmune, it is, perhaps, palindromic arthritis. Perhaps. They prescribe anti-inflammatories and mild immune suppressants, they don’t stop a flare up and the anti-inflammatories just make it feel the tiniest bit better but not at the worst times.
I went to the hospital today, the line of thought is a new one because I have been having problems with my back and my hips. More bloods taken, more x-rays, more physio, lets just hope that leads to more understanding of what is going on.
If you want to read more about my on going saga with autoimmune conditions I have written some blogs previously:
I have to stop writing now because the trouble with pain is that the more you think about it and focus on it the harder it is to forget that it is there. Distractions are necessary to ease and breathe and move on to something else. I will let you know if and when I get more useful information on the root cause of what is going on. Obviously, I want to draw a line under what I’m feeling but I’m also curious to know and I hope that some time with a doctor or two will help me to step through this. One thing is for sure, if I don’t proactively strive for my own health no-one will.