(Image: Self-portrait in progress)
Setting aside the livelihood concerns and horror flashes of the potential impact yet another chronic health issue could have on our freshly established life, I ponder about the benefits I receive from lockdown and wonder how I can replicate them.
I’ve felt benefits every single lockdown; I’ve lived five (yes, five!).
Perhaps it’s what I and those of us living with chronic pain need to be forced upon us – you know, like some official guardian who grants special permission for us to stop – the GP and specialist orders just don’t cut it.
I get pain and consequences of my activity, communicating clear reasons why I should stop – pain, spasms, function changes, fatigue, limitations, incapacities, etc., but yet I don’t lock myself down.
I can’t bring myself to totally take the time I need when I need it. But, unfortunately, this also means I’m not taking the time to get better.
Isn’t this stupid?
Why would I not take the time needed to give my body relief, which would calm my body, brain and nervous system? Why wouldn’t I stop the poking on that trigger that causes pain (if, in fact, that’s what the cause of the pain is)?
Lockdown time appears to be crucial for pacing back to whole life.
Every lockdown has given me a leap of some kind. I genuinely think lockdown together with my spinal cord stimulation has armed me like never before in this 14-year journey.
There are moments I’m so comfortable. Of course, it’s seconds and minutes, but it’s soooooo freeeeeeeing.
I ‘just’ walk over to get something – nothing is restricting me. No fog, no warning signal; it’s just me moving in the space. So I can totally focus on what’s in front of me, I can hear the quiet, notice the dust and envisage all the things I plan to do.. to the end! It’s an uninterrupted dreamy sequence!
If memory serves me correctly, this is a typical experience and a sequence that should be totally taken for granted instead of awed.
I haven’t experienced this before lockdown. EVER.
CHECKPOINT: 14 years, 4 months and 21 days (or 5257 days, or 172 months & 21 days), I have experienced a short uninterrupted sequence of normality.
This being a brilliant step, I still can’t celebrate driving, experiencing this comfortable uninterrupted sequence of normality without consequences afterwards, sitting in a chair without a cushion, lifting over 5kg, being free of fatigue, pain, spasm, and blah, blah and blah.
But this is moving forward with chronic pain. It’s slow. Hope comes, it goes, it drags me back and forwards with it.
So isn’t this experience enough incentive to make me pull out the stops and lock my own self down?
You’d think. But it doesn’t. And that’s because I can’t make it actually work.
It’s your world I need to lock down for me to be able to relish a beneficial lockdown in a whole-bodily and whole-mindedly way.
My world closing taking a nap is the teeny ingredient that makes all the difference. It’s you locking down, not so much me. Your locking down grants me permission not to have to explain why I can’t mingle with you, and it’s a relief that I also don’t have to excuse myself from participating. In turn, it means I stay home and potter to my pelvic tunes.
All the conversations and excuses just stop, and I get to go with my pelvic flow.
One word explains this lockdown bliss, and this word keeps floating back to me through each lockdown – about the only sound getting louder in my head. People use this word differently, but it means the same to us (unlike pain). It impacts us in the same way, and everyone gets it.
I’m going to use it to explain chronic pain. It’s the word ‘pressure’.
Pressure for me fits as a definition for chronic pain. Allodynia, spasm, stabbing, electric, neuralgia, hypersensitivity, even the word pain itself – pressure communicates them all far better.
I have chronic pressure issues, yes, I’m like a pressure cooker, and my top (actually, it’s my bottom) goes off if I apply too much pressure.
Really Pudendal Neuralgia and its ‘other associated medical conditions’ can never be put more simply.
I realise that the bells go off no matter my position or activity, or situation if the pressure gets too much.
So whether I sit and ’cause’ pressure, whether it enters my nervous system or my brain or wherever science believes it pings from and for whatever reason it pings for, it is a ‘pressure experience’, and that is what I’m trying to conquer.
Lockdown works because it simply takes the pressure off. And the more lockdowns, the less pressure I feel because, the less I have to participate in the world.
This equation leads to a sum of short, uninterrupted sequences of normality.