I am living a non-life. Because health policy in Australia will not allow me to have a more full, more functional, life.
Three years ago, in June 2020, my opioid pain medications were force tapered to a dose that no longer manages my pain around the clock.
Prior to June 2020, I was capable of working for 5-6 hours, most days. I did about an hour of exercise daily, whether that was walking, jogging, resistance training or a group exercise class depended on how I felt. I had far lower blood pressure, blood sugar, bodyweight, and resting heart rate. By every objective measure I was fitter, stronger and healthier.
And then I was force tapered.
Now? My life is very different.
I have to note that, to be fair, I have collected more serious diagnoses during that time and my original diagnoses have progressed. Therefore, we are not comparing apples to apples, exactly.
But would my disease have progressed this far, had I been able to remain active? Had I been able to remain strong and fit? That’s a very good question and I lean towards “no” being the answer.
I know that I would not be living in abject poverty, well under the poverty line. Because I would be able to work enough hours to be employed.
I run a business; this is my second (relatively) successful business. The first was a jewellery making business. I built it to where I was ready to hire staff, expand and get rid of the disability support pension. I built it from scratch. From nothing. From ideas in my head. I performed every role in the business, making the product, finding suppliers, shipping orders, customer service, buidline the website, search engine optimisation, social media and marketing. I am a highly skilled, highly motivated, person.
But then COVID-19 hit and my business, like so many others, foundered when the world shut down. Before my business could recover, my hands deteriorated, due to rheumatoid arthritis and what was then thought to be peripheral neuropathy but is now known to be chronic inflammatory demyelinating polyneuropathy (CIDP). It’s a very disabling disease. It has taken the strength from my legs, and I am fast losing the ability to walk. It took away the strength and fine motor skills in my hands. It took my ability to make jewellery.
I closed my successful business. And I went back to living in poverty, while I built my second business.
What I did NOT do, was give up. I kept pushing forward. Always new ideas, new opportunities. I have always believed anything is possible, if you keep an open mind and recognise opportunities when they are there.
Now I am running my second, relatively successful, business. It supplements my disability support pension, but not enough to put my family above the poverty line. You see, I support two young adult children. They are not self-sufficient; one is 100% dependent on me. One of my children lives with significant disability, however its completely different to my own disability.
It adds to the complexity of my life. When my children need me, I drop everything. They, always have and always will, come first. Next, comes work. Making money. Building my business. Marketing my business. Posting to socials, creating new products, keeping up with my competitors.
The scary thing is, as I spend more and more time requiring a wheelchair, this could happen again. I could lose this business too.
I import product from China and Europe in bulk, repackage it under my brand, and sell it online. I cannot do that from a wheelchair. I need my mobility to run this business. I need to be able to stand. That, or get a garage that is twice my current garage’s size so that everything is at wheelchair height. Its not viable to run my business from premises off site. I work when I am able. Sometimes that’s at 3am. My business needs to be home based. And I could not afford to rent premises, anyway, my business would not be profitable. Even in an incubator space.
As it is, business is very up and down. Some weeks we eat well; fresh fruit and even meat! Some weeks we have peanut butter sandwiches and cuppa soup.
I cannot save, every cent I earn goes to pay the perpetual credit card balance. Trying to avoid paying interest, not always succeeding. I buy stock on credit and hope I’ve sold enough to pay it back before interest is due. And things happen. Things break. As it is, I have no hotplate, because it stopped working two years ago, and I cannot afford a new one. The heating also does not work properly, it can either heat upstairs, OR downstairs. Not both. It would take 10K to fix that. Therefore, I work downstairs under a heated throw, and the kids are warm upstairs.
I never eat out. I don’t go to movies. And a holiday? Don’t make me laugh! I can no longer drive my car far enough to do a road trip. I stay within a ten-minute radius of home because I get too fatigued to drive safely for any longer than that. And my eyesight is deteriorating. I am night blind, so I can’t drive at night. I am deaf in my left ear. My left leg is partially paralysed because I had cauda equina syndrome, and surgery came too late to restore full function. I feel very lucky it’s not my right leg, and lucky have an automatic car.
I am still capable of driving safely, but I know the day is coming when I will have to surrender my licence.
With the CIDP progressing rapidly, its likely to be sooner rather than later. Life will become harder when I can no longer drive. Although, in truth, the only times I drive these days is to go to medical appointments, and to get groceries once in a while. Mostly I get everything delivered.
Thankyou COVID, you launched home delivery services that have made my life much easier. There is always a silver lining.
But I am house bound. That’s not an exaggeration, nor a figure of speech.
If I had pain relief, I would be able to do much more.
Remember? Before June 2020 I used to work 5-6 hours a day. If I had appropriate pain relief, I would be employable. I could get a part time job and show up reliably. I have shown myself to be a hard worker.
I would not be living in poverty. And my children would not be living in poverty.
I would be far healthier. My blood pressure would not be high, my cardiovascular fitness would not be low, and I would have a much longer life expectancy. Not to mention far better quality of life.
I would not be housebound. I would have friends, relationships, a social life. Hobbies. I could eat in a restaurant. I could see a movie. I could go on a road trip to the beach and spend a few days there. Not only would I be physically able to walk on the beach, I would be able to afford to stay a few nights.
These are very simple things. Things that most people would take for granted. Even those people who consider themselves ‘broke’ can get to a movie, or a weekend at the coast. These are very small asks. But even if someone drove me to the beach, tomorrow, I would spend the weekend lying on a couch. Perhaps I would have an ocean view or be able to hear the sounds of the crashing waves. That would be wonderful, I admit. But it would also be torture, not being able to walk on the beach, to paddle my painful, burning feet in the ocean. To be so close to the ocean I love, and yet forever be impossibly far.
And why do I not have pain relief? Why was my pain medication reduced to a dose where I only have pain relief for half the day? Why did my doctor reduce my pain medication, even though my general health was good, and I was experiencing NO adverse events, not even so much as constipation?
Because some rich, white man in the US decided that 90 milligrams of morphine equivalent (MME) is enough opioid for anyone to manage their pain.
That man was wrong.
And that man was not using science. Look into it. You will be shocked (or not) to find that there is no evidence that 90MME is an appropriate ceiling. You will find that the number was in fact just pulled out of the air. That in 2010, or thereabouts, 90MME was considered low dose opioid therapy. They didn’t consider a dose ‘high’ until somewhere around 200MME.
And since dose ceilings and forced tapers were introduced in the US, overdoses went up, deaths went up, and suicides in the chronic pain community went up. And the same thing is happening in Australia. Since June 2020, and doctors started force tapering their pain patients off their long-term opioid therapy.
For no reason other than they were told to, by the health department. Its politics, not science. And certainly not medicine.
There is no place for dose ceilings in pain management. Response to opioids is individual, depending on genetics, biology, tolerance, severity of pain and more. Pain management needs to be individual, and therapies, whether opioid or no, need to be individually tailored. 90MME is a fallacy. Not only do many people require significantly higher doses, but these doses are safe and effective and bestow improved quality of life, with little increased risk.
The popular science is wrong, as so often is the case.
And so pain management in Australia is not individual. We are all herded into the same cookie cutter treatment programs, those of us who require opioid pain relief are cut off somewhere around 100MME. I am currently on 105MME. That covers me for around half the day. If I do something too energetic, if I work too hard, or do too much exercise, its far less.
We pain patients are constantly threatened that even that dose will be taken away, if we dare complain.
When my life was full and functional, I was taking 135MME.
For the sake of 30MME daily, my life has been taken away.
Taking away someone’s functional ability is the same as taking away their life.
My health has been taken away. I can no longer exercise, cook healthy foods.
I have no social life. No friends. Wait. One friend. I have one close friend.
My financial future has been taken away. My career has been taken away (I was a computer programmer, a web programmer). I used to be well-paid. That’s why I have a decent asset base. During the 20 years I worked, I saved and invested. Thank the gods for that.
Then I got sick and I discovered that no one cares about sick people. No one cares about people who live in pain. No one cares about people who are disabled by disease.
We are just a drain on society. Worse than worthless, we cost the government money. But why? Because the government disables us by taking away safe, effective, life-saving treatments.
We are told we need to meditate, live mindfully, exercise, get good sleep, pace ourselves, and the pain will go away.
That is not true.
That is partially true of chronic primary pain. That is the correct way to treat chronic primary pain.
But I do not have chronic primary pain. My pain is secondary to serious disease. There is pathology, there is inflammation, there is ongoing injury. Pathology is the biggest influencer on my pain.
Yet no one cares.
It is not their problem. I get shafted from one health care professional to the next, none of them willing to help. They may want to help, but they fear government retribution – supervised practice, prescribing rights taken away. They fear for their careers.
So I lose my life.
This is what living a non-life looks like. I wake up between midnight and 2am most nights. I try to sleep more, but 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. I was never one to enjoy lying around doing nothing. In fact, I have always hated it. 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. I am motivated and determined. I have been proven capable, when given pain relief. But I am NOT superhuman, and you need to be superhuman to exercise for an hour 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.
But yet one of the most common weapons 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 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 means I can’t work. That means I can’t read a book. I can’t 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 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. Women’s pain is very often ignored. Or at the very least, diminished, demeaned, 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.
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 and the body does need rest at some point. But 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.
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 5pm, and then I would be able to continue working. And cook dinner. Or 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. 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, 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.
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!”
Most pain management doctors are the same. They are all working under the same regulatory system. They are all constrained by the health departments 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. 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.”
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, 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 courses. 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. 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 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. When you have a pathological disease, ‘pacing’ is not a treatment. Its just how I have to live my life.
They say that pain will improve if I pace myself correctly. So there, again, its my fault my pain is not improving. It must be my faut. I must be doing something 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 am well used to the pinched face and the scowling expression as the health care professional notes me as ‘difficult’ or even ‘non-compliant’ because I am disagreeing with their assessment. 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 are wrong, and I am right.
But it does not matter. Because they have the power. And I do not.
One 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.
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. Only chronic primary pain is championed. But we 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.
We are forgotten. The dirty little secret, swept under the rug. Alive, but not living.
Living a non-life.