Living a Life of ‘Being Alive’ but Not Living…
By J. S.
I have had to push myself through an extremely high pain threshold, where I often are left dry reaching from the pain or passing out – and all because of a high speed, drunk driver 18 years ago.
I’m not going to go into specifics because that would be wasting valuable time. I will say this, before that high speed collision caused by a drunk driver eighteen years prior I had suffered some very serious traumas. However none of these left me seeking out Panadol – let alone high class opioids.
Let’s go back in time to that accident… The pain, which I am able to describe as being flung out of a medieval catapult at high speed, straight into a concrete wall is unlike anything I have experienced in my life. Any movement, whether this be walking or lifting , travelling in car, bus, taxi, train – anywhere I need sit in an uncomfortable seat well, this all affects how high my pain levels reach. The pain is constant; it’s there when you wake up and worsens depending on what you do that day.
What I do with my day depends entirely on how high my pain levels reach. There is of course a maximum, and once I reach this point it’s only a matter of time before I pass out or drop to the ground.
By the way this is all while I am taking Fentanyl. I can take this and lie in bed or sit on the couch all day doing nothing, which keeps the pain at a level I can manage.
I’m proactive though, and spending life in bed or on couch watching tv ‘ain’t’ no life for me.
This has been my life for the last 18 years so before you ask, I have done all the rehabilitation options possible. I have done all the rehabilitation, pain management and pain clinics. I have tried all the epidurals, nerve blocks, nerve ablations and facial joint injections. Optical blocks, 60 to 70 needles in head, neck, shoulder, back, hip and chest – I have tried these. I have even had trigger point injections.
Before, the specialists had put me on Fentanyl patches and though they didn’t fix the pain, my pain levels did drop between 30-40%. Despite all of these treatments I now know only a few things work, because every other possible idea has been tried, tested and failed.
My successful options consist of being hooked up to Lidocaine but the level I needed to be pain free, well, it stopped my heart. Very high doses of alcohol spirits always help as does Fentanyl or other forms of opium; all these sedate the CNS.
I experience migraines and seizures from the brain injury and I have herniated discs in my lower back. The injury between my rotor cuff and spine felt like a steel rod pierced through my back and exited all the way through my chest. This has left pain radiating through my ribs, chest and hip on my right side.
I feel like my body was cut in half right through the center and then reattached. I have acquired an inoperable, interior cerebral AVM (arteriovenus malformation) after a stroke in the same area as a diffused cerebral dysfunction diagnosis, after the brain injury from an accident that happened 10 years prior. The devastation of the accident still lingers!
I have endured gamma knife radiation, which failed to fix the AVM, but succeeded in causing chronic teeth problems. I now experience wider pain areas on my left side as a result of the thermoregulation damage caused by the radiation.
Despite all of this I am now told this will be pointless, because the government wants to stop my right to access the drugs that make a completely messed up life not so messed up.
All because doctors categorize my case with the drug dealers and street addicts who have no need for these drugs and end up dying. In 18 years not once have I overdosed, misused medication, ‘doctor shopped’ or asked for more than I need… These drugs make my daily pain tolerable.
I never asked for this.
I never caused this, that drunk driver stole my life in a split second.
I shouldn’t have survived but due to a strong upbringing, time spent playing tough sports and a tenacious willpower I have endeavoured each year to push on. The decision that drunk driver made that night cost me my friends, family, personality, business, enjoyment of life and ambitions.
I have developed a major depressive disorder with hourly suicidal thoughts and now my coping mechanisms are about to be taken from me. Without medication I can’t set goals, I can’t go outside to distract myself from the demons in my mind.
Taking away my medication is taking away my life, because I won’t have one when I am stuck in bed.
There is much more to this story but already I am fed up explaining myself. I am sick of being judged each fortnight as a drug user, pleading out of necessity to get the drugs to judgemental people who fail to understand. It’s true what they say, ignorance is bliss. People like me who live 24/7 with high pain levels are the ones judged and categorised with the junkies and street dealers while the criminals go on supplying these drugs to innocent people, the children and teenagers who do not understand how powerful these drugs are in the wrong hands.
The only side effect I have from these drugs is the withdrawals I face every time my GP is sick, on holidays or has a procedure of his own. He is 74 years old; when he leaves I will lose my legal prescription. I won’t be able to afford to source and buy these drugs on the streets. My life will be over…
It’s incredibly frustrating that a common comment or suggestion I get by pain doctors, neurologists or psychiatrists is to “…try medical cannabis.” This is despite having informed these medical professionals to imagine a car, and then to imagine hitting that car with a sledgehammer. At least then you will find a ding or dent in the panel you just hit. Now imagine that car is my pain and the sledgehammer is medicinal cannabis. It fails to leave a visible dent but it does leave feelings of paranoia, which is most likely attributed to my brain injury and constant mental illness.
Current Government documents authorise the use of medicinal cannabis, along with the cannabis oil psychoactive delta-9-tetrahydrocannabinol (THC), which included a day flower and a night flower. From this the best result I can expect is maybe 30 minutes of extra sleep before waking from the pain again. I can’t sleep on my right side or my back because of the pain or on my stomach because of the hiatus hernia. 17 years of sleeping on the left side has caused my left femoral artery to bulge and can be very painful!
I have an upcoming Doppler ultrasound on my left leg; hopefully this doesn’t result in yet another angiogram. I have had 4 brain angiograms so far with no positive result…signing out!
I would love if anyone anywhere had the correct answer as to how people with disabling pain like me can continue to get these high class opioids. At least they make our day somewhat comfortable, when compared to a normal person… This answer may be a life saver to many!
We need the politicians on our side and I write this as a warning to the Government: You will cause thousands of chronic pain sufferers to die from your crackdown on legitimate Fentanyl users. If they were to check my prescription record for the past 18 years not once would they find any overdoses, misuse or ‘doctor shopping’.
I write this as a warning to street Fentanyl users: 1/8th of 1 Fentanyl patch, 75 mg injected into first time users is enough to kill you. Any Fentanyl you may find on the street in either a tablet or powder form poses dangers. You don’t know the strength of what you’re taking nor what has potentially been added.
There needs to be a ‘green card’ of sorts for the genuine people like myself who are suffering debilitating pain. The drunk driver destroyed my quality of life by 70% and reduced my life expectancy to 55-65 years old. Having to fight for my prescription makes life so much harder when this medication is what I need just to survive a low quality of life.
The drugs I need to control my disabilities:
- Fentanyl, for the pain
- OxyContin, for the pain
- Lyrica, for the seizures
- Paxam, for the seizures back spasms and to help with thermoregulation symptoms
- Aurorix, for my mental illness caused by ongoing pain
- Emagality, which is a monthly self-injection for migraines
It has taken years to get the best combination of medications to treat my disabilities. I don’t have long left anyway with my early dementia symptoms. I wish they would just leave us alone without the added stress of accessing the medication needed to get through each day.
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