I just found out that my pal (also living with decades of CRPS) also hears screaming in her head. Whilst our outer presentation is calm and in control our inner voices are busy doing what we can’t do in the outer world. If we started it’d steal all our energy, undermine our steely determination and, frankly, we’d never stop because the pain never does. The inner screaming is the tell-tale of relentless suffering that our behaviour to those around us belies.
My pal and I work well together. Where my brain now fails, hers can handle it, and vice versa. Together we can get the job done because the bits that stall each of us are picked up and dealt with by the other.
We chatted about the inner screaming and bounced ideas around. Her with her medical training and neurogeekery, me with my psych background and experiential approach.
Just because we have inner screaming doesn’t mean other pain patients do, but what if we all have something happening around the point (and beyond) that our body’s coping system goes into overdrive? Not the one where people notice we’re really symptomatic (because most people won’t see our pain until we’re on the verge of requiring hospital treatment) but the point where our inner alert goes off. Like one of those secret alarms that let the security and sort-stuff-staff know that there are threats that need to be dealt with. A message just for us, about the state our body is in.
What could it be for others?
Screaming is what my pal refers to as a primal response. That’s our clue. Primal. Nothing sophisticated – it’s not a chatty message, it’s an alarm going off about the unbearable. But the unbearable is our permanent condition. It varies in intensity but never goes away. This alarm could vary too. Be it inner screaming, nausea, physical shutdown/freeze, and such like.
Hardly surprising, as many years of chronic pain impact on all the internal systems that both talk to and inform each other. We develop lots of comorbidities in the same system as our original ‘fault’, but also in the other systems that are informed by the faulty system either directly or via the brain, or by a faulty brain that’s causing the original faulty system. In a nutshell – the human body communicates so thoroughly with itself to function, that a dysfunction does not get cordoned off or contained. It has multiple effects that accumulate over time. Alarm messages showing up in different systems is not a surprising outcome. Especially the longer the patient’s body has been dealing with the chronic pain.
Do you experience something like this? A marker of pain intensity that doesn’t necessarily involve pain itself? And all the while our exterior belies the extreme experience we’re living because it often doesn’t show on our faces as a ‘pained’ expression, or in our composure as a ‘pained’ posture or pain-impacted speech etc. We’ve had years, many of us have had decades, of having no choice but to live with the pain and as such it does not ‘show’ in the way others might expect.
On the inside.
– It. Does. Not. Show.
Interestingly, it can be calmed down. Sometimes noticeably so. It’s not a fix, it’s one tool of many we use to try and cope with what is a never-ending “ALERT ALERT ALERT” situation inside our bodies.
I’ve been learning this year how important it is for my health that I make sure I take time for me. Specifically time to do something that makes me happy, that I enjoy, that feeds my soul or my hunger for knowledge. Something literally just for me. After trying to factor it in because it had dawned on me (fiiinally) how much I am skewed towards trying to be ‘useful’ or ‘productive’ I then also discovered that it really helps me to stabilise symptoms and improve my baseline pain and functionality whilst reducing my stress levels. I know. It’s obvious to everyone but us, right?! But the internalised ableist Guilt of not being “productive” in the way our society frames it means that it is absolutely commonplace for us chronically ill patients to disallow ourselves any fun or relaxation because we have not been productive enough and don’t ‘deserve’ it. And if we do allow ourselves time the guilt eats away at us.
Today my visiting CRPSer pal has been reading a book for a prolonged period of time whereas audiobooks are usually the only viable option for her. Turns out the calm friendly company has quietened the screaming which is allowing her the option of either for once. Nice! Mindfulness is all well and good but it’s blooming hard work when there’s inner screaming or it’s equivalent. What is making it easier for her is being in the company of someone she feels relaxed and comfortable with instead of battling the pain alone.
There’s all sorts of research about how our loved ones impact on our experiences and it has been notable how research participants can endure significantly more pain when in the company of a loved one, in fact, even with just a picture of them to look at! Many a time I’ve commented on how much better I can cope when Magic Dude gets home from work. He’s not just a distraction, he’s not just someone who brings me food, fluids and hot water bottles to save me from making my symptoms worse trying to get them myself… he makes me feeeeeel better. His existence helps me cope. Preferably his close proximity but even chatting to him on the phone when he’s on his work lunch break can have a significant effect. It’s not just partners of course, it’s people we love. They might be family by blood, family by soul and heart, they might be furry four-legged family members…love helps, but is it really the love making the difference? I feel that a significant part of it for us painees is the external focus on that person or on that love. We are trapped in these bodies with the pain and the screaming and the dizziness and the lack of functionality….an external focus that we love is a handy option in our toolkit.
That would mean though that it doesn’t have to be a person, whether a human or animal one. Indeed, many of us have creative hobbies which, despite taking a physical toll of some sort, we love and persist with. Whilst we’re drawing / colouring / sewing / designing / writing / taking photos / crocheting etc our heart soars with the joy of doing something we love. Engaging more strongly with a focus outside of our tortured internal experience doesn’t change the inner experience, but it does tip the seesaw of attention in a more bearable, even enjoyable, direction.
It doesn’t stop the pain; it doesn’t solve the problem but it can help us to cope. Calm that silent alarm down for a while. Give us some hint of respite from the pain that never ever relents. Allow our nervous systems to dial down the alert level so that our systems can run at lower levels of horrific for a bit. It gives our bodies reduction in the intense stress and strain on our systems that is otherwise non-stop high-level impact. Enabling us and our internal systems to rebalance and restabilise to some extent – and that is crucial.
So, to temper the silent alarm we have to do more than just manage our health. We have to acknowledge ourselves as more than just a patient with health needs and allow ourselves to feed our hearts and souls. Often an external focus can help a bit, whether it’s human, animal or hobby. Whatever helps, right?
Ridiculous that having performed and taught Tai Chi I should be so ridiculously unbalanced in my lifestyle approach eh?! It’s so hard to see it when we’re in it though. And ableist views of productivity and usefulness are so ingrained in us that it takes a good while to work them out of our psyche and reframe ourselves more appropriately and realistically.
So if it helps, here’s the Thing:
Moments of enjoyment and relaxation are not something to feel guilty about because…
…they are in fact a crucial part of our pain and health management that we must not neglect because our systems are under such relentless continuous stress that it is imperative that we do so. We have to factor this into our daily lives along with our other management tools.
So you don’t just have permission, it is a necessity.
Love as always, x
You can read my pal’s post about this here:
We’re both interested in your experiences with this and realise that our different writing styles make our conversation accessible to different readers. Plus I was intrigued to find out how differently my brain would write about the same subject considering that she and I work really well together because we come at things from different angles and with different approaches. Heh, you’d think I was trained in research or summat! 😉 (Spoiler, I am, heee).