Living a Non-life with Chronic Secondary Pain - Part two

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https://open.substack.com/pub/arthriticchick/p/living-a-non-life-with-chronic-secondary

This is what living a non-life looks like.?

I wake up between midnight and 2am most nights. I try to sleep more, but usually I give up and get out of bed between 3 and 5am.? 5am represents a solid sleep in.?

Lying in bed is painful.? Long gone are the days where bed was blissful reprieve from the world. A cocoon, a haven, a private, soft, safe space.? The idea of looking forward to falling into bed and finding sweet relief from pain is a fallacy. ?Bed hurts too.

I was never one to enjoy lying around doing nothing. In fact, I have always hated it. My idea of a holiday was never lying on a beach.? It was always doing something, seeing something, going somewhere.? But my life now necessitates that I spend most of my time lying around, doing nothing.? While in 7+ pain.

Or rather my pain management doctor necessitates it.? And then tells me I must be more active.

I would love to be more active. Please provide me the pain relief so I can return to working part time and exercising for an hour per day (see part one). I am motivated and determined.? I have proven I am capable, when given pain relief.? But I am NOT superhuman, and you need to be superhuman to exercise when your pain is a 7 and rising.?

Not only can I not do that, NO ONE can do that. It is not possible to exercise over a certain pain level. It is not possible, and not sensible, to ‘push through’ that kind of pain.

And yet one of the most common weapons used against pain patients is to imply we are weak. Lazy. Malingering.? That we just need to accept ‘a little pain’.? Our pain is minimised, our suffering painted as a product of our own psychology.?

I know what I can endure. I know I can endure a lot of pain.? I have been put through many painful experiences, and many painful procedures and surgeries.? More than one surgeon has told me that I have a very high pain tolerance.

I don’t expect anyone to believe me when I say “I have a high pain tolerance”. In fact, I know that actually saying that aloud to a health care professional is a one-way ticket to ridicule and being left in the section they call ‘Siberia’ in the ED. And ignored. ?

Last night I woke at 11pm, after going to bed at 6pm. I went to bed that early because I was in terrible pain. A solid 8.5 out of 10. That level of pain means I can’t work.? It means I can’t read a book. I can’t even watch a movie. Can’t do anything but meditate and breathe.

On my pain scale, I am most often at a 6, which means pain is intrusive, but I can still work, still function.? At 7 it becomes difficult to work, but I can lie down and watch a movie and follow the plot, as long as it’s not “Inception”.? At 8 the pain is all encompassing, and the Wiggles are too intellectually demanding.? At 9 I call an ambulance and at 10 I plead for death.

And yes, I have been at 10. Twice in my life. ?Both times were in hospital. I didn’t arrive at hospital at a 10. No, I experienced that degree of truly excruciating pain during my admission, due to complications from major surgery.? Complications that the nursing staff did not acknowledge and did not escalate.? And therefore, the complication, and the resulting pain, was not treated.? I was told I should be grateful that I am still alive, and I am. But that should never have happened.? And it only happened because the nurses decided I was a malingerer and a drug seeker.? So they ignored me. And nearly killed me.?

Women’s pain is very often ignored. Or at the very least, diminished, demeaned, and dismissed.?

I was lucky to survive my first “10” because I was slowly bleeding to death, following a botched surgery.? A family member had to jailbreak me and take me to the ER across the road, where I was admitted, given transfusions, pain relief and my life was saved. ?This should have been unnecessary. The nurses and doctors in my original hospital should have noticed I was bleeding out. But they did not, because they had already decided I was a whinger, a whiner, a chronic painer.? And they ignored me.

But I digress.

At a solid 8.5 I am disabled by pain, and truly suffering.? ?I go to bed and put on YouTube channels of people with soothing voices.? I have autoplay on and I may start out on a true crime channel, move through ancient roman history and wake up on shark attacks.? I am not asleep, but I am not awake. I am in twilight.? And I do feel pain.?

The pain is what keeps me awake. When I finally sleep, it is from sheer exhaustion. Pain is exhausting, but the body does need rest at some point. ?It is short lived.? Four or five hours of sleep in a row is sheer bliss and a rare treat.

Last night I woke at 11pm, got up, stretched, walked around the room and lay back down. I watched midnight tick by, then 1am, and I drifted until I woke in sharp pain at 2am.? I argued with myself…no, still too early to get up. ?Stretch. Move. Roll over. ?3am and I got out of bed, went downstairs and took my 7am dose of pain medication.

By 3:30am the pain was a 4, and I was working on my business. Doing SEO on my website. I am a hack of all trades, and there is always plenty of work.

I worked off and on through until 10am when the pain started to become too much.?

Now I have a dilemma. I either lie down and endure the pain until 3pm, when I am allowed to take my next dose.? Or I take my dose early.

Five hours of lying on the couch at an 8.5 out of 10.? That’s a very long time.? In the middle of the day.? Being frustrated because I have so much work to do. So much I want to do. But cannot due to pain.

I took the dose.? I always take the dose.? I always choose daylight hours and work over sleep.? And now I am working again.? I know my pain relief will run out around 5pm and by 6pm I will be in agony and forced to go to bed.

And the cycle continues.

The way to break the cycle is to take the third dose of pain medication at 6pm, and then I would be able to continue working.? And cook dinner. Or even go out for dinner! Imagine that!

That’s what I used to be able to do. Take another dose of pain medication and have an evening, a night. ?And be able to sleep through the night.

That’s what my doctor has taken away.? One third of my life.? At least.? And most of my sleep.

My pain management doctor refuses to reinstate my previous dose of oxycodone, even though I have proven to him by every objective measure, that my life was much, much better before June 2020, and The Forced Taper. ?And I was much, much healthier before.? Despite having objective measures (blood pressure, blood sugar, cholesterol levels, resting heart rate, body fat percentage), not just my subjective experience, he refuses me.

He told me flat out, that he COULD increase my dose, but it’s too much paperwork for him to do.?

Too much paperwork.

As opposed to my life.

Seems reasonable.

This is what I am dealing with.? Imagine, your life was taken away from you, because your doctor did not want to do the paperwork.? Did not want to be red flagged by the health department. ?Because it would complicate his professional life.

Imagine how you would feel about that. ?Take one minute and really think about that. You are being forced to suffer, when a safe, effective treatment, a proven treatment that you previously took to very good effect, exists.? But now, you are NOT allowed to take it.

What do you do?

‘Get another pain management doctor!”

Great idea…except…

Most pain management doctors are the same. They are all working under the same regulatory system. They are all constrained by the health department’s rules. ?They want to help, but they cannot.

The next pain management doctor might be even worse.? They might force taper me off completely.? It’s a genuine risk. ?

Or, they might decide that by seeking a second opinion, I am ‘doctor shopping’.? Which is an instant forced taper.? A very serious red flag.?

Or, given that I will be a new patient, asking for a dose increase, they may decide that I am ‘drug seeking’. ?Despite my not meeting any criteria for opioid use disorder, they may still red flag me, and, you guessed it, force taper me.

Or, they might empathise and say ‘Sorry, there is nothing more I can do.”? When there absolutely is more they can do.

That’s almost the best-case scenario.

Chances of my previous dose being reinstated is now just about a hair’s breadth above zero.

Still, I cannot live this way anymore. I have to do something. I am a doer, not a taker.

I have a referral to a new pain management doctor. It will be more than six months until I can get an appointment.? Nothing will change any time soon. ?But at least I have taken some small action. ?Flexed what tiny amount of control I have been allowed to retain.

And as my leg muscles deteriorate due to CIDP, as I get weaker and I lose the ability to walk, I wonder which will come first – the appointment or me being a permanent wheelchair user. ??I am fighting that proposition, because I know that its far, far better to maintain strength than try and regain it once it’s lost.

I am also seeing a physiotherapist again.? And I need to endure the “Explain Pain’ pain neuroscience education, which I’ve already told him I know, I understand, and it does not resonate.? I do not need pain neuroscience education, both because I have learned it, and understand it, and also because it does not reduce pain. ?It is not a valid treatment; it is a myth that was never intended for chronic secondary pain.

I have done the exercise. I am a qualified personal trainer; I have been fit all my life. I also trained as a health coach. I am qualified to teach meditation and mindfulness.? I have done plenty of physiotherapy. And I am seeing a psychologist again. But to be honest, my psych admits that I am doing everything ‘right’.? I have no maladaptive thoughts and beliefs.? Let alone behaviours.? She offers me a venting room, however. ?A safe space. And that is important.? Because NO ONE else will listen.

Everyone wants to put me in a box. The Chronic Primary Pain box. That’s all that health care professionals have been taught.?

They say I am fearful, that I am anxious. I am not.

They say I must be a catastrophiser.? I am not.

They say I need to exercise and they refuse to listen when I explain that I exercise as much as my body will allow.?

They tell me to learn to pace myself, without understanding that I have to pace myself. I am forced to pace myself. I do nothing BUT pace myself. ?

When you have a pathological disease, ‘pacing’ is not a treatment, not a strategy or a tool.? Its just how I have to live my life. ?It’s also common sense, and not the great revelation they seem to think it is.? Despite years of pacing, my pain has not reduced, my capacity as not increased.

They say that pain will improve if I pace myself correctly.

So there, again, it’s the very strong implication that it’s my fault my pain is not improving. ?It must be my fault. I must be doing something wrong. ?That’s the constant message we chronic pain patients are sent. ?Because health care professionals have been taught that ‘chronic pain’ can be cured with psychology, physiotherapy, exercise, pacing and maintaining a positive attitude.? But that’s only true of chronic primary pain, and I do not have chronic primary pain.?

My health care professionals are wrong.? They have been taught wrong.? They have only been taught about one type of chronic pain, and they do not understand any other. They have been lied to, and in turn they repeat that lie to me.

They say I need to get better sleep. That my pain will reduce when I get more sleep.

I keep explaining it’s the pain that’s keeping me awake, not being awake that’s causing more pain. ?I understand the circular argument and how sleep and pain amplify and affect eachother.? For some it may be a chicken-egg argument, but for me the pain very definitely came first. ?I remember. I was there.

I am well used to the pinched face and the scowling expression as the health care professional notes me down as ‘difficult’ or even ‘non-compliant’ because I am disagreeing with their assessment. ?I am explaining my understanding of these concepts, of pacing, sleep, fear avoidant behaviours, and I am denying I them.? I am educating them on my life, on my pain.? And that is unwelcome.

They have not been taught about chronic secondary pain. This much is clear. But they are the health care professional, they do not wish to be schooled by a patient.

They believe that I am wrong and they are right.? They have not listened to me, and insist I must listen to them.? They explicitly say that I need to learn about pain neuroscience and understand it, and until I do, my pain will continue.?? It sounds more like a threat than education.

But I have learned about pain neuroscience.? And they are wrong, and I am right.

But it does not matter. ?Because they have the power. And I do not.

I have no agency, no power, no control, no choice and no voice.

Except now, I do have a voice.

One more thing I did do to fight this lack of control was start an advocacy group. ?To give people like me a voice. But we are all in severe, daily pain. We are all living with progressive disease, permanent injury, severe daily pain.? So progress is slow.

And we have no funding.? I have self-funded what we do have, a website, and a podcast is in the works.

I have fundraising ideas…but I have three or four functional hours a day. If I spend my time fundraising, I can’t do advocacy work.? And I also have to run my business, because peanut butter sandwiches are wearing thin. And that credit card is not going away.?

We chronic secondary pain patients are a minority. A minority of a minority. And no one is fighting for us.

In Australia, in 2023, only chronic primary pain is championed.?? Only chronic primary pain is treated.

But we, those of us in the advocacy group, do not have chronic primary pain. We have chronic secondary pain.? It is the same as cancer pain; pain caused by serious disease, caused by pathology.??

Cancer pain is acceptable, cancer pain is still being treated, though there are disturbing stories of people with terminal cancer being force tapered as well.? But pain from other diseases most definitely does not get treated.? We get herded into programs for people with chronic primary pain, psychosocial pain.? Not surprisingly, these programs are not very effective for us. And for this, too, we are blamed.

People with chronic primary pain get appropriate, evidence-based treatment. ?While we, people with chronic secondary pain, do not.

I’d like to start a not for profit.? Because I have talked often to the current chronic pain peak bodies. I have been to workshops, attended webinars, been a member of consumer advisory groups.? And I have approached the leadership with my personal story and asked for help.? And I’ve been made many promises…promises of help, of raising awareness for people who live with constant severe pain. A voice for people with disabling, pathological pain.?

When I, exhausted, in pain and tired of these familiar words, spoke up that I’d heard this same promise before. That for three years now, I have been promised action, and nothing has as yet eventuated, the response was to block me on social media and ignore my emails.

Petty.

But again, a very clear message of who has the power. ?And who does not.

Maybe fundraising IS where I need to focus.? I have to become louder, as Chronic Pain Australia advised in their National Pain Week campaign.? Perhaps they also need to listen, because there is nothing on their website, about chronic secondary pain. And there was nothing in National Pain Week 2023 on chronic secondary pain. Nothing for people living with severe, daily, pathological pain.? And while their surveys have shown for two years running now that forced tapering and lack of access to long term opioid therapy is the biggest issue in the chronic pain community I don’t know if anything is being done. ?

We are forgotten.? The dirty little secret, swept under the rug. Alive, but not living.

Living a non-life.