My tool box
Being left to my own devices with my illness has encouraged me to find ways to cope. Especially during a flare up. My head has began flaring whilst writing this post so this will serve as a good reminder.
At the pain clinic we discussed having a personal tool box. A selection of aids to help us cope when CPS is raging. I learned after my 5th trip to accident and emergency that they really couldn't help me and it wasn’t just that I was seeing the wrong doctor. I also learned from those numerous trips that opioids didn't touch my pain. So that was one possible way of pain relief that was out of the window.
My wife pointed out that i got better at dealing with flare ups when I got through them without dragging myself to the hospital. As she said ‘Si, you must be doing something right’. And there definitely came a change when I was struggling through them at home. I decided to see my flare ups as opportunities to learn.
Heat has always been kinder to my body than the cold, so when I feel a flare up coming on run a hot bath. It’s my first port of call. I take my record player into the bathroom and play the Johnny Cash album ‘0ne hundred highways’, lie back and relax. A soothing bath also helps to calm me, less stress means less pain.
If the pain is still flaring in the evening I take an extra 20mg of amatriptalyne. The night’s of flare ups are spent in the living room, usually pacing. With the pain mostly centred in my head I am unable to wear my oxygen mask to bed because it aggravates my head. And without it I have bad sleep and keep my wife awake fidgeting and swearing. So i’m better off downstairs out of the way.
As I said before, heat helps me. On more than one occasion I have tied a hot water bottle to my head with my dressing gown cord. The heat distracts from the nerve pain and is also a good look. My teenage daughter doesn't agree but hey - whatever works. It’s not a fashion show.
I make the cushions up on the sofa and get comfortable in an upright position so the blood isn’t running to my head. Unless it’s my back that is flaring, in which case I lie on my back on a thin matt on the floor. For some reason sleeping on a stiff floor helps my back pain - don't ask why.
So after a hot bath, a tweak in meds, a hot water bottle strapped to my head and a comfy position I meditate for 15 minutes. It isn't ’t always easy to be still and in the moment - especially when the moment is on fire but I sit through it nonetheless. Lower stress levels and calm are good for the mental strain of a flare up, that could last hours or day’s.
If all else is failing me I get my music player out to serve as a distraction. There is a particular album that keeps me focused away from my pain. The drummer uses wierd time signatures that take concentration to listen to. For me distractions are a last resort. The album is called ‘Fear Inoculum’ by Tool if you are interested (and it rocks!).
It is then just a case of riding the storm. And i’ve managed up until this day so I must be doing something right - however wrong my body feels.
This is just my way of dealing with flare ups. Of course, we all have different tricks and tools that help us. I hope you find relief whatever you try.
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