So though I know you understand all too well just how abruptly things can alter, however momentarily, and though I know we already apologise far too much when living with chronic pain and illness, because of its unpredictability, because of its ferocity and flares, and the swiftness with which they descend.
Because of the lack of control that thins with each setback, and all else they bring. Because our word has become unreliable and world so unfathomably small, and because that world is such an altered world, so far removed from ordinary life.
We also apologise as, like so many disabled people, we don’t have the support we need, and no matter how far we try to stretch ourselves and push our limits to the edge, sometimes there just aren’t enough spoons.
Yet despite this, and my words perhaps seeming superfluous given to whom I speak, I wanted to say something, to explain, so abruptly did I vanish, say sorry though in a more sentient sense, and also share this poem and quote with you.
Partly to emphasise that even in the darkest places, the most lost and saddened and stuck, we still each carry a light inside of us, however much it might be dimmed or our voice so swiftly silenced, and partly, as this tower’s community is one of the most serendipitous lights and silver linings around such a bruised and lingering cloud—it breaks my heart when I cannot connect with you.
Though more so perhaps as each exacerbation, each CRPS spread or bedridden flare gives the rawest reminder of just how hard it is for each of us, which is why I created this humble tower, and why in full vulnerability, share this with you now, though hoped to far sooner than this.
Because it is a different world, a hard and complex, debilitating world that you have to live to understand, which affects far more than our bodies but our minds and spirits too. Being bedridden is profoundly isolating, and chronic pain and illness are already deeply isolating. In fact, nothing in life is untouched by the presence of complex illness and unrelenting pain.
Living with Chronic Illness Permeates Everything We Do
“The reason for my silence is the same reason for beginning this blog. Living with chronic illness permeates everything we do. It is the scaffolding of which we build each day. It determines our daily plans, what we take on, and what we leave unfinished,” wrote para las fridas, echoing my thoughts of late.
“As I dedicated each day to doctor’s appointments, physical therapy, medication changes, and rebuilding my life after a health storm, this unfinished blog provided comfort knowing that it was a place for me to return. As the months passed, I was forced into long stretches of bed rest, breaking from work, my passions, the world, and my voice.
“This is the cycle, after all, of the chronically ill. It is a sequence of retreat and victory, of silence and stories, and of mining the telos of one’s spirit. What incites us to account our narrative to others relegates us to silence in other moments in a life lived with chronic illness. I was so engulfed in pain, fatigue, and just getting through one hour after another.”
When chronic pain and illness flares up, when all is halted in an instant, and then all we try to do to get through it, to heal ourselves and escape it, from each painful moment to the vast amounts of time and life missed, also fails, however temporarily, it’s natural to slip into darker places, especially when we’re so isolated in both body and experience.
Yet despite this we do keep trying, and even if thwarted or momentarily lost, we do somehow find our way back, and I think remembering this, knowing that however dark, seemingly inescapable and tempestuous each storm, the sky does calm and clouds do part eventually, allowing a little light in, even if that light now falls on a different world, it still warms us, and it’s still our world, our life.
This particular storm fell after a single, albeit beautiful day in between a winter-long flare and seeing a dentist who used an anaesthetic containing epinephrine (contraindicated in CRPS). If you have CRPS, please read the info on CRPS & dentistry at the end of this post.
This lead to another fierce CRPS spreading* in my face, which made one eye burn and face feel vast and on fire, and given its near-everywhere (save my exquisitely ambidextrous elbows), a subsequent systemic flare ensued.
So when medications were also changed without so much as a mention and it all fused with a near uninterrupted cycle of unexpected opioid withdrawal, I had little choice but to momentarily disappear deep inside the Tower.
Most hamperingly of all (it’s a word for now), I’ve been quite unable to use either hand since December, so flared, on fire and dystonic are they, and though now have the teeniest pockets of use, each second needs to be tempered with complete rest, often for many of those mind-is-willing-body-says-no hours at a time, to which I know many can relate.
And though I could have asked someone to say something, I truly believed each day things would ease, literally spending each spoon striving to but it neither simmered nor let me voice such, so caught I was in a nasty fusion of flare, CRPS spread, and opioid withdrawal.
Though in light of a such a long and unexplained absence, also didn’t want to return without an offering for you, but even now, and sure I’m not alone in this, we try to squeeze more spoons than such capricious chronic illness and pain allows only to land back in the flare.
In fact, each time I spent even a salt spoon over the pacing limits, landed back I did, while trying to line up scheduled posts for you also had their own individual catastrophes but without use of either hand nor able to sit nor stand nor speak, albeit momentarily, this royal person had turned quite mute.
When Chronic Illness & Pain Makes You Feel like a Failure
“It is a truth we face when dealing with an incurable disease that we must rewrite our future story after it is continually malformed by our bodies. To live with a chronic degenerative disease one must constantly engage in meaning-making […] because illness is unremitting and untrustworthy,” says para las fridas.
Much of that meaning stemmed from creating this healing portal from my own bed and tower. No matter how fierce each flare nor stupendous each CRPS spread, and even if all else was impossible, however temporarily, the one thing I had always managed to maintain was the Princess community Facebook page and Twitter but even these were hampered by recent events (tweets joyfully unaffected).
During the longest stretch of being bedridden (8 years), it was often the only thing I achieved but if it helped a single person, just one, then that is always enough. You may not even have noticed, so far ahead do I work but after so many months of setback even this thinned and slowed and stopped. So I had vowed to help that one person yet found myself failing…
“A medical crisis can topple all that you have worked towards in a mere blink. Therefore, we are professionals at reconstruction and rebooting our future. Often times, it is a future tinted by professional and personal sadness. Illness fractures identity and makes us feel less complete because completion is continuously interrupted,” says para las fridas.
“To be chronically ill means we face the unknown and the inability to control our circumstances to a greater degree. It is conceivable that the loss of control and the inability to command our body to do what we desire or need it to do is masked in feelings of failure.”
Explanations Can Feel Like Excuses in a Productive World
To live with such ongoing uncertainty, fluctuating symptoms, and flares that momentarily halt the living part of life, to strive to choose between each essential act — and then endure the payback and consequences after each — is hard, displacing, isolating, and of course painful on many levels. Chronic illness and pain can invoke these feelings of failure.
The most seemingly simple acts become the greatest blessings when you’re no longer able to do as you wish, from using a laptop or crossing a room whenever you choose to being spontaneous on a far grander scale, but when we’re stopped by the pain and chronic illness, especially when so determined, our explaining this is also hampered by the divide of understanding.
“I have carried the weight of my career to the brink. At that border, I am sometimes halted by the pain my body is experiencing. It is there where I am left explaining to the non-sufferers why I couldn’t accomplish all that I desired. It is there I feel like a failure. We live and experience everything through our bodies,” says para las fridas.
“As a chronic pain sufferer, I am fluent in two languages: a world that is very different from the everyday world and the world in which I must conduct my life. In order to survive in two worlds, I must translate the first language of pain constantly to those who have never suffered. It feels like an excuse and who among us wishes to always feel like we are making excuses.”
Chronic illness already comes with such vulnerabilities, to then reveal more of ourselves, the most broken, fragile parts, can make us feel even more exposed, more of a failure without this understanding, more saddened by it too, especially in a world which places such value on what we ‘do’, on being healthy and productive, and especially when we’re trying so hard but the pain stops us.
Yet in these feelings of failure and the striving to articulate the reasons for that ‘failure’, which seldom can be conveyed to those without pain and illness, we must remember all we’re up against and how much we do survive on a moment-to-moment basis; part of being human is to embrace our vulnerabilities though also to see our inherent strengths, and handling pain at all is handling it well.
Turning Feelings of Failure into Self-Compassion
“As I negotiate the complexities of living in chronic pain and attempting to exert control over my body, I am slowly beginning to recognize that the feeling of being completely responsible for my body is counterproductive. It isn’t my fault. I didn’t ask for this and I am doing my best,” says para las fridas.
Chronic pain and illness does not discriminate, and it’s already tough enough, do not add to it by resting your focus on thoughts that make you feel worse (if you’re finding yourself increasingly caught in repetitive thinking, try the tools in this post, you may also enjoy these simple ACT-inspired tools).
As no matter how frequently it feels as if it’s us who have failed, not done enough or indeed, done too much, judging ourselves harshly is perhaps the worst attack we make on ourselves. We’d never talk to another in the same way we self-criticise. Yet despite the difficulties inherent in such complex circumstances as these, we are so often unkind to ourselves.
Sometimes we even blame ourselves, and these feelings can feed off each other, after all, it’s our own thoughts that colour our inner landscape, and either heal or hamper our ability to cope.
“We can’t always control the world outside of us, but we can learn to control our inner world,” writes Toni Bernhard in How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. By which I mean how we treat ourselves and how we regard ourselves.
“In my view, there’s never a good reason not to treat ourselves with the same kindness and compassion that we treat those who are most beloved to us, and there’s never a good reason to regard ourselves as unworthy.”
Instead of focusing on where we falter or fall short of our own perhaps high standards, turn around each moment of harshness, of self-criticism into compassion, and know that even the act of recognising these moments is in itself a moment of awareness, of compassion.
“It’s natural for emotions to arise so I try not to make it stronger by feeling it with worse-case-scenario stories. Instead, I’m gentle with myself until the emotion passes — as it will,” says Toni.
So despite such sadness, feelings of failure too, instead vowing to be self-compassionate, to give it the space and grace to heal, pacing teeny increases, being careful not to worsen nor remain in this place, and like each of us as we’re escaping a long setback, trying again, as this is the best we can do. In fact, to paraphrase Mary Anne Radmacher, the courage is always in trying again.
So though apologising for chronic pain and unpredictable illness, and the limits it places on us is something we all already do far too much, and though there’s at last an offering for you, things are easing and the light returning again, both hands are still caught in their own ongoing flare so scandalously behind on replies but will get there as always do—eventually.
Far more joyfully, thank you so much for all your comments, lovely messages, and understanding, so grateful. Focusing on completing offerings that help the most people given such few spoons and replying to everyone as soon as I can. Gentle hugs x
Read Para las Frida’s beautifully raw and deeply resonating piece here: A Returning – para las fridas, A Returning – Sunlight in Winter (both highly recommended blogs by two inspiring pain warriors).
CRPS and Dentistry
Here’s a list of helpful tips for you and your dentist to reduce the nervous system response to dental treatment, and to minimise a flare or CRPS spread by the brilliant Elle and the Auto Gnome: CRPS patients and dentist appointments | Elle and the Auto Gnome
Crucially, ensure no epinephrine is used. CRPS specialist, Dr Chopra also suggests:
—Start Vit C 500 mg and continue for 2 weeks
—Ask your dentist to prescribe Minocycline to prevent infection and it has a pain fighting component (note this can cause discolouration of the teeth, with great irony)
—They should give you more marcaine than they would another patient.
See more advice here: Going to the Dentist with CRPS (written by Dr. Pradeep Chopra) Going To The Dentist With CRPS
“Choose a dentist who is educated about CRPS or who cares enough to allow you to direct his or her education as to your personal situation.” — CRPS and Dentistry – American RSDHope
If you already have CRPS in your face and/or eyes, my heart truly goes out to you, as it does to all living with severe pain. There’s no guidebook and often such limited guidelines so we need to share and support each other, especially if our experiences can help another.
*This spread was caused by epinephrine; if you have CRPS, please ensure your dentist understands. Sharing this info in the hope you never need go through this too—it’s just not worth the risk.
Blame it on My Body: Chronic Pain and Feelings of Failure – para las fridas
There is reason to hope. – Sunlight in Winter
Coping with Chronic Illness…Compassionately | The Self-Compassion Project
I’m Not Asking for Pity for My Chronic Pain — I’m Asking for Compassion – The Mighty
Jacqueline Fuller says
This is beautiful in its honesty and caring. Thank you for remaining a kind teacher and a leader despite your suffering. I’m grateful for your good work.
Thank you, Jacqueline, so touched by your kind words and comment. ❤
Andrew Jarvis says
A great job of speaking for those suffering like this… Few can do that so abely.
Jo, you have a whole lot left to say — I look forward to hearing it.
Thanks, Andrew! Always appreciate your support and encouragement, your kindness and work supporting others in pain too. ❤ You too have much left to say **holds up mirror of support, and extra spoons for good measure** gentle hug x
Amanda Vanhooser says
I just found your website. I am so grateful to you for sharing and creating this. God bless you!!!!!
Hi my dear it’s late night here and all I can say is that I’m going to pray for you to get healed and get back to a normal life, wish you all the best