I have just come out of a long period of remission from trigeminal neuralgia – I was pain free for my 8 months of pregnancy.
A topic that comes up often in the support group I run is the fear of pain returning. If you have a good day, a good week, or even a good several months, you live every day thinking, ‘is today going to be the day the pain comes back?‘
I try to stay positive in general. I’ve lived with facial pain since 2015. I’m aware how consuming it is to think about pain all the time.
A few months ago, I tried some hypnotherapy sessions over zoom with Martin Johnson from 8020 Coaching and these improved my mood massively, which, in turn, reduced my stress levels and allowed me to challenge myself in the way I handle my pain. (A detailed blog post on this is currently pending!) He taught me that thinking about pain, even in a positive light is still giving power to my pain – note to self: think ‘I am feeling healthy and well today‘ instead of ‘my pain is low today‘!
I am definitely trying to do this every day I wake up with low pain, or I’m pain free, but that is the hardest thing to do when you know how painful TN is.
It feels pretty brave to say you’re in remission, like you might tempt the pain back! I’ve had two significant periods of being pain free in the last 6 years, but lots of months where I’ve just experienced low pain levels instead of TN at it’s usual high intensity.
Then it comes back at full force and reminds me that, yes, I live with one of the most painful conditions in the world and, no, there isn’t a cure.
One day, I will wake up again and the pain will hit me literally square in the face and I am right back to where I started.
The pain actually crept back gradually this time, starting with a tingle, then a bit of a ‘itch’, until my whole face felt like it was crawling again. I knew it was going to happen, but that doesn’t really take the edge off the disappointment I felt on the first day I could feel it again. I knew that my remission was only down to my pregnancy – it was timed too perfectly to be anything else!
Having a pain free day, or week, or experiencing low pain levels just feels like a ticking time bomb when you have TN. I feel like I’m just waiting for the next thing.
Being pain free also means I am absolutely terrified of doing anything that might trigger the pain, so I feel like I stop doing things that I usually struggle through when I’m in pain. I don’t want to lose my identity. I still try to go out with friends, see my family, go for a drink and live my old normal life, just now with a few modifications.
But when I’m in remission, I feel like I don’t want to risk anything. When I’m completely pain free, do I really want to risk the breeze against my face or have a drink of anything that isn’t perfectly room temperature?
I wish I could enjoy my pain free days without the little niggle at the back of my mind.
I’m not saying I’d rather be in pain, but I’m saying that I can’t enjoy not being in pain when I know that it just comes back.
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