I need to share a story about some of the realities of making a life with all-consuming pain, when something goes wrong. It is something so intensely private and raw for me, but yet this time it needs to be shared.
I am currently on holidays in Australia, where I brought my toddler for the first time to meet all the family, and spend some time grounding myself back home. What I didn’t plan on, was finding myself in hospital. These bushfires are some of the worst I have seen, after growing up seeing many bushfires in our local area. The air quality is so bad, that despite my best efforts - my strictly adhered-to asthma plan crafted by my respiratory specialist - I found myself admitted into hospital. Sometimes you can do all the right things: seeing the right people, follow your treatment plan exactly; sometimes it just doesn’t work. Sometimes you cannot control everything.
As I was lying in the ED the other night, I told myself I would get a few treatments, and be on my way back home. Because I had done the right things, followed the rules. My body had to play ball too! But my body had other plans. The asthma symptoms would not subside, after huge doses of salbutamol and oral prednisolone. So as I was wheeled into resus, and accepting that I was going to be properly admitted, I thought about how annoying my body was being. Why doesn’t it play fair anymore? I was also really feeling my usual anxieties of being in hospital, remember past times with nothing in my control. This time, being separated from my baby. All this in itself, is pretty intense. But with continuous pain - pain that was unrelated to what had brought me to the ED. I had to force my pain and all my immediate emotions into a box, because there were more pressing matters at hand. I was given IV steroids, magnesium and more salbutamol to get my symptoms under control.
The major side effects from all this (which I had hoped would be balanced by the anti-inflammatory effect of the steroids) was painful cramping and dystonia in my CRPS-affected limbs and tachycardia. This has happened before, so I knew it was a possibility. A side effect of steroids is depression and anxiety. However in a situation like this, the life-saving priorities are clear and anything else comes secondary.
In the ward the next day, I tried to distract myself from the intensifying pain in my CRPS limbs that came from the excess adrenaline and the immediate danger being over. I sketched completely non-dominantly (usually these days I sketch somewhat bilaterally), I listened to my pain soundtrack to push myself through it. I pulled everything out of my coping bag, trying to stop the fall. But I couldn’t. I still got locked in that terrible world of pain I couldn’t escape; where no one could enter, nothing could help. Where my intense physical pain melded with my anxieties and fears. My emotions about being in hospital - again - for asthma. All my fears about everything. My pain consumed me in crushing fire that could not be put out, as mentally devastating as the bushfires which caused it.
And I had no words to tell anyone what I was experiencing. I had no way of asking for help. It was that private hell that pain becomes. So I pushed the nurses away, built that wall of steel around me and drew further within myself. Essentially, I achieved nothing but a complete crying meltdown in the end!
It is a difficult position to be in, because I knew that this pain wasn’t just from the salbutamol flared up cramping and CRPS. The emotions and fears that came with being in hospital for a life-threatening event, coupled with less emotional control and discipline than I am used to having played a huge part. Either one on its own was manageable, but not together. I knew, intellectually, that pain meds cannot really help for all those types of pain. But my refusal of them was also illogical in that situation, because there was a clear, short term need. Pushing through pain because it is ‘normal’ in abnormal circumstances would not help in my recovery back to that ‘normal’. How many battles did my body and mind really need to fight at once? And why couldn’t my brain see that I was being so infuriatingly irrational? (the steroids!)
I’ve spent a lot of time in hospitals, and each time I have learned a lot about myself, and my own pain coping strategies. While I hate to admit it, having these meltdown moments give me the biggest realisations of the barriers of my own creation. Where there are weaknesses in my coping strategies, or where I am too rigid and inflexible to changing circumstances. These experiences are also where I learned to verbalise what I needed from others better, while maintaining some small but vital degree of autonomy when all control is lost.
Long story short: the moral is about compromise, rather than all or nothing. Pain, unfortunately is often all or nothing. It is a hard lesson to learn: to compromise with our bodies, our pain and when circumstances beyond our control go up in flames and smoke.