That would be like me saying ‘goodbye flares’ in my undiagnosed years.
You just don’t get to make those decisions when you don’t have explicit knowledge about the beast you are dealing with. And this is where I believe the world is currently with Covid-19 – lost for understanding!
There are so many similarities between managing Covid-19 and managing chronic pain. I feel I have some insights to share, but who’s going to listen to a person living with chronic pain for 14 years? What could that possibly have to do with managing a virus?
Well, I think my experience has a lot to offer.
Short, sharp lockdowns
Haven’t we all done that? Don’t we all continue to do that?!
People living with pain are full of hopeful plans that chronic pain undoes whenever and however it feels.
Short, sharp lockdowns is what we do all the time. All it takes is a feeling of rising pain, rising heat, pins and needles, aching feet, a spasm trying to go to the toilet, inability to fall asleep, fatigue, losing your vocabulary, the sun shining too bright, a bit of noise and we’re down – not often for a short or sharp time either!
So how about those anti-vaxxers bonding together and protesting – how does that make you feel?
I can’t envy their freedom and ignorance enough as I’m pleased for them not to know or be able to imagine what living with a chronic illness might be like, however… if any of them happen to get in my queue when I need some scientific medical attention, they’re going to hear it.
Back of the line, thanks! In fact, how about you get off the grid altogether as that would really support your argument for ‘freedom’.
Communicating health information
Is it Cancer, and is it sexy? Then no, don’t expect total attention – not even if this illness could be far worse than Cancer or any other well-understood health condition. No one will grasp the severity of the situation because the information is confusing!
Just like pain communication, the information dished out about Covid-19 is uncertain. There is a teeny bit of science and a bundle of theories and seriously lacking data for the lived experience – it’s a lousy soup!
And the vaccines? What a messy lot of communication that’s been (but I do secretly wish I’d been offered a lottery ticket for fronting up to have an injection!!).
Get to 0 transmission
Or, in the terms used for chronic pain, get to 0% pain or a full backpack (as Pain Revolution describe it). Anyone with chronic pain knows if the bells have gone off and you haven’t yet started the task you wanted to complete, then tomorrow and the next day will be really tough.
Start with 0% pain and a full backpack, however, and you’ll get through your task and you may just get away with a brief rest the next day.
I so relate to all this, and I feel like a bit of an expert. So I thought you might appreciate my top ten tips for how to begin thinking that maybe you might be able to have a slim chance at managing Covid-19… just perhaps:
- Strap in; it’s going to be a bumpy ride.
- Don’t think you can organise the virus- it organises you.
- Don’t think you can work with the virus – it rules you, your life, your livelihood, your family, your friends, your world!
- Don’t think you can negotiate with the virus – it is the higher power.
- Submit yourself to a lot of sacrifice and learning – your best case scenario!
- Get two buckets (one huge and one teeny) and label the giant bucket; ‘does not work’. Label the little bucket ‘works’ and then start by taking everything you learned about managing the virus to date and put it in the ‘does not work’ bucket because Covid-19 is a chameleon genius, and tomorrow is a brand new crap day!
- Accept you’re best case scenario is merely being able to anticipate the genius qualities of Covid-19.
- Accept that Covid-19 is in your life forever.
- The only head start you can make is to cull your life, and
- (never forget) The virus is the winner
No, I’m not sarcastic; that’s how living with chronic pain is, and that’s what living through a pandemic is like.
It’s worse if you get the virus… your lockdown will be extended for years, possibly decades and even for the rest of your life.
You don’t want it.
Already I’ve endured six lockdowns – that’s open, shut, open, closed, on the horse, off the horse, on the treatment, off the treatment… exact, same chronic crapola!
This is the impact on life that a chronic health issue imposes on a human. It’s endless, relentless, and there’s no escape. So your most fabulous position is to find a way to live and befriend the monster.
And stop complaining.
My life, my beautiful life
Suddenly the general public’s daily living and working radius have shrunk – hello!
I know how shocking it is to be unable to get up and go, travel, commute, feel the freedom and bliss of life and instead be stuck home.
It’s hard to adapt to; it doesn’t feel like living. But right now, all of you in lockdown are paying it forward to your health. If you get sick, you may well be out of work for a lot longer… possibly out altogether. Or you might be left with long Covid-19 symptoms and have to live and work with chronic effects…that’s damn hard.
I graduated at establishing life within a specific kilometre radius. And actually, I self-assigned a PhD on the topic of ‘establishing a whole complete life within a 1km radius‘.
I know how preventing a chronic illness goes and I know how important it is. It’s costing billions. It would cost much more if we all got Covid-19 and lived with ongoing symptoms.
Creating a home sanctuary that incorporates livelihood is key to surviving Covid-19 for now If you can’t go to work, then work has to come to you. You, my friends, are in the fortunate category – even if you’re homeschooling.
If work can’t come to you, then you’re in trouble. I’ve been there. That feels like the end of the line.
But I also learned that responding to the fear of change and the possibility of a whole new life can present you with some extraordinary new life experiences. Creativity shines bright when desperation hits. You have to swim, right? And you are more creative than you know.
The similarities between living with chronic pain and preventing Covid – 19 are just many. It’s saddening that the world is beginning to live like I do – restrained and livelihood affected.
My initial feeling of comfort transforms to an odd and twisted sickening in the stomach that the world is impacted by a dreadful restriction and illness.
Beautiful lives are not possible without excellent health.
So, a certainty for your bets is to try the treatment, get the jabs, suck in those vaccines, and temporarily cull your life – this isn’t forever because science is amazing!
You’ve got your ‘does not work’ bucket for everything else.