Surviving chronic pain pt 2

PART 2 – MUSINGS FROM THE SEABED

A tale about a little tartan jam pot, drugs, and other obsessions

For those of you, who have explored sea beds when diving or snorkelling, will know, that as a general rule, they are rarely very interesting. Often that is because at depth there is less vegetable and animal life. At the bottom of the ocean, there is often only barrenness, just sand, and darkness looms all around. With depth, comes fear for the diver, as errors are more quickly punished, often with catastrophic results. One can’t just do a couple of kicks, reach the surface and gulp in some fresh air in the sunlight. No, one must be disciplined, follow the rules and perhaps with over a hundred feet of water above, stay calm and trust in one’s diving partner should something untoward happen like equipment failure.

Part 2 of “Surviving chronic pain” deals with that section of the journey which is neither a descent nor an ascent, but rather an exploration of what superficially appears uninteresting, the challenges of daily living with the condition. And yet it is on the seabed of experience so to speak that the return to the surface is quietly, almost unconsciously prepared, if one is not overwhelmed by the darkness all around. And it is at this level that one really gets to know what matters.

Earlier I spoke about the experience of No-Self. Here in the depths of experience I speak of its very opposite; stripped of outside interests by pain and the associated mental states, one’s attention falls almost entirely on oneself, a daily feast of constant hyper-vigilance to the extent that even listening to others became problematic, as the mind constantly checks the pain levels., The Ego, far from toppled, is now king, resplendent in its self-regard, commander of all my fears, with me scurrying to satisfy its wishes, its whip, the sensation of pain that tethered my attention to the body, that scheduled my day with lie downs, salt baths, short walks, and other activities measured and adjusted to the sovereignty of pain.

Pain and I were now one. Spiritual teachers might say that I am pain free because I can objectify pain as being separate from the observer. And in theory they might be right. But my lived experience was that there was no self-reference in thought without the sensation of pain. The subject appeared to have dissolved into the object of observation. I would call this the very antithesis of Enlightenment. The Ego triumphant in its rule of fear. The seabed is indeed a good metaphor for the essential barrenness of self-obsession. So let’s look at this phenomenon a little more closely.

One of the characteristics of chronic pain is the impact on the psyche. It tends obviously to be pretty devastating; anxiety and depression are the natural bedfellows of chronic pain. In fact, statistically, 20 per cent of chronic pain sufferers commit suicide. That’s one in five and that is astonishing, it should be higher. It’s not surprising that the disorder has such fatalities because pain strips the life from its victim, empties the bank account as he or she desperately flails around looking for a solution, willing to pay any price. Pain weakens and often ends friendships as the sufferer repeatedly misses invitations or cuts them short, or spends the evening on the floor of their host’s bedroom, isolated and listening to the hubbub of the party behind the wall. Even the strongest friendships are tested, as the condition of the suffering friend fails to improve as the months pass by and one’s natural compassion becomes exhausted. It is not only the sufferer who faces the essential powerlessness, but also friends and family. After their suggestions have been followed up and exhausted, they too are faced with the daunting reality of an unchanging condition. It is understandable if some friends look away and become fair weather friends. One can understand this response. Given the needs I had for support, these far surpassed what one’s local social circle could provide. Only my sister and a couple of friends could really cope and look at my unwavering discomfort without flinching.

One of the advantages of having a specific injury is that having gone through the acute phase you have the reasonable hope that the body’s natural tendency to heal will lead to a resolution at some point. In my case, I spent almost a whole year to June 2018 having one treatment after another, from seeing all these pain consultants, surgeons and healers. I had a caudal injection. then a coccyx manipulation by a large Indian doctor, – happily under general anaesthetic – pelvic joint injections, lumbar injections, and finally two ketamine injections which I rather enjoyed as they were weird and somewhat spiritual when one woke up. All of which I paid for from my savings.

In the end, the panoply of modern Western medicine drew a blank on me and I was simply referred to psychologists. It should be noted that modern medicine is not structured to cope with the complexities of chronic pain, a pain that bridges both mind and body. Unfortunately it has evolved in silo formation as each speciality became deeper and narrower. That is why pain teams in hospitals are now multi-disciplinary as the NHS tries to meet this complexity but their tools are very limited. Fundamentally, chronic pain is not well understood. That is why doctors sometimes call it Complex regional pain syndrome. Complex because they don’t understand it.

It goes without saying that I tried and followed up on every friend’s suggestion of one hands-on practitioner after another, the effect of whom was mostly short term aggravation. Exercise also made things worse, as I found out in the first few months, walking the 12000 steps round Hyde Park and going home distressed, I learnt by experience that 4000 steps or one hour’s walk was my limit. If I swam too many lengths (e.g. 20) I ended up in tears on the floor at home. At best I could handle only four to six lengths at my local pool. I was more responsive to the relaxing effects of the steam room and jacuzzi. The autumn of 2017 was thus spent trying various ways to get back up to the surface of normal life and learning that there were strict limits to my new life in the slow lane, and if I broke the rules I was severely punished.

Chronic pain is particularly challenging if you live on your own and are not in a relationship. You experience the full unmitigated force of the disorder, as it assails the mind with fear, panic, anxiety and hopelessness. But perhaps, I should digress a little and try to explain how this particular pain triggered such terror in me. Its key characteristics are its dynamic curve of intensity, its radius in the body, the central location at lumbar and tail region, which, being core areas, are particularly destabilizing, and its promiscuity in its ranging and unpredictability. Imagine a ball of fire floating in your attention span locatable in your body but moving from day to day between the mid lower back, across the buttocks as nerve pain, or a bruising pain at the coccyx. If not dampened by the strong painkillers, pain intensity could grow from an uncomfortable 1-3 on a standard pain scale, up through moderate pain 4-5, expanding to a severe 6-7. where you might start to groan and moan, become psychologically distressed, start crying, up to level 8 where you start looking for death options such as a high window, or which kitchen blades are most suitable to end it and so on. Normally on the few occasions where I crossed into the 7-8, I became mute and mentally stupefied by the sensation of pain running amok through my nervous system. Thus I never ever forgot to take my meds. But most days, the pain stayed around the 1 to 5 mark. I mentioned earlier that during late 2017 I was on Tramadol up to the maximum daily dose.

By late January 2018, when I finally got to see the NHS pain team at my local hospital after four months of being on the waiting list, I was at a very low ebb. I had experienced six months of not getting to sleep properly or using sleeping pills, and not eating well, as pain kills the appetite, I was left a shell of myself. I weighed under ten stone. I had by then almost given up and felt only a few weeks away from a self initiated death. I remember being with my sister in the waiting area, lying on a bench with my head on my sister’s lap as she gently stroked me. When in the presence of the pain team, that is to say the consultant, the physiotherapist and the psychologist, I stayed standing throughout and expected another useless encounter. But I was to be proved wrong.

The pain consultant doubled my morphine equivalent dose ,or, MED for short, to 3.3 mg of morphine per hour, using a more powerful drug than Tramadol, and more importantly started me on Mirtazapine anti depressants which helped with sleep and appetite. Looking back this decision was a key turning point, as getting enough sleep is the basis for any kind of recovery. This decision slowed and eventually halted the descent towards oblivion. It was, using the diving metaphor, the point at which you slightly inflate your buoyancy jacket so you can stay balanced at depth. Yet for most of 2018, I found myself on that wretched seabed. The darkness of which however would persist for many more long months into late 2018.

Now, I am sorry, but we need to talk about suicide. I cannot explore the world of chronic pain without discussing this most sensitive of subjects. I have already given you the statistics on this condition. Almost, if not all chronic pain sufferers, I surmise, have had suicidal thoughts. It goes with the territory, the depression and the feeling of hopelessness. In my case I also had a metastasized cancer diagnosis which in the light of my circumstances appeared to be, as my oncologist often mentioned, the least of my problems.

It took a relatively short period of time to start thinking practically about ending my life. After a few months of barely controlled chronic pain, the mind, as is its tendency, looks perpetually for solutions. As the medical appointments passed, one after another, and failed to offer a diagnosis, I was told I would have to learn to live with the condition. A state of being in which control over my life seemed intrinsically absent, and one way to regain control once again and at the same time to communicate the level of my distress to friends and family, was to end my life. While every suicide is a tragedy, it is also always a communication, the act and the method communicates. Just like a terrorist action. Every suicide is a murder , a self murder and one that speaks of the heavy burden of unexpressed feeling, whether of rage or sadness. This final act had appeal in the sense it felt congruent with my can-do attitude that any problem is fixable;.an ultimate expression of power. From my perspective my body had become irretrievably damaged by my cancer treatment and therefore no longer fit for purpose. We take our pets to the vet when they suffer without hope and don’t hesitate to put them down as an act of mercy. Why not a person?

I remember spending the autumn almost every day comforting myself that should the pain become intolerable a quick lean out of the window from the fourth floor would end it, until research revealed that death was far from a certainty from that height. On another occasion I bought a bottle of whisky, and on a day of great distress frantically but very carefully emptied out 100 pills of Tramadol into one of those little breakfast pots you find in hotels. Thus my lifeboat, as I saw it, was 9 grams of Tramadol, to be tossed into one of my morning juices with a pack of sleeping pills. Such a quantity of Tramadol is four times the lethal dose. I know because I researched it. I bought a book on assisted suicide on Amazon, and researched the subject on the internet. I remember one afternoon in late Spring walking around my flat with a plastic bag over my head, one without holes obviously, and rubber bands around my neck as a practice run. I learnt that the bag had to be as big as possible to give one time for the sleeping pills to take effect before one ran out of air. On that occasion and others when I felt particularly stressed and desperate I would allow myself a Valium and thus the crisis would pass. On other occasions I reached out to friends who could tolerate me crying down the telephone. I would say that over the first year of my torment I thought about suicide on a daily basis. I used to envy those I read about in the newspaper who had left this world. I felt empathy for those who killed themselves due to excessive tinnitus or back pain. I remember telling a close friend that my biggest fear was that I would, rather like Rommel, the Nazi general, be forced by circumstance to commit suicide.

I learnt to get through really difficult days by promising myself that tomorrow would be day of my release, with that little breakfast pot. And that day never came. On two occasions I turned to my GP when I was overwhelmed by suicide ideation to the extent that 80 per cent of my thoughts that morning were about ending it. She sent me to the mental health unit at my local hospital and I had an interview with a care worker who, having heard my circumstances, said my suicidal response was entirely rational and no further action need be taken. Subsequently, in mid 2018, I turned to a private psychiatrist who after taking £400 for the hour, also told me there was nothing wrong with me mentally, my suicide ideation was entirely appropriate to my situation.

Gradually, during last year, these thoughts became less frequent as my flare-ups grew less frequent. I understood that such thoughts are produced by the mind and paradoxically, it is trying to problem solve; suicide ideation is, in a way, a control fantasy. At first I rarely shared this secret with anyone and certainly not how advanced my plans were. With no hope of a cure, the future beckoned as a desert plain of unrelenting suffering. So why continue? Since I had lost interest in everything because consciousness and activity were both too difficult, I could apply myself to planning my exit.

I did run through my mind in detail the immediate short and medium consequences of being found dead in my flat. I could see what it would do to my mother as I remembered how she reacted to my father’s death, the terrible grief that overcame her. I imagined it would have killed her. My sister who would have to clear and then sell my flat, deal with the authorities, mourn her only brother and carry on living, forever blighted by the knowledge that her brother had committed suicide, and perhaps carrying the guilt of feeling she had failed me somehow. The same goes for friends. I imagined attending my funeral and listened to what my friends would say. This use of the imagination turned out to be an effective bulwark against acting out my control fantasies. But these thoughts were strong and persistent throughout these two years. There were days when I looked around and everything was a means of departure, the traffic, the tall buildings – could I gain access? I used to monitor how fast the buses and lorries were rolling by. At stations I used to stand far from the platform edge in case I had a sudden impetus urge to jump. Just like a businessman can assess his environment for potential monetization of restaurants and hotels, so I looked at the world around me as a potential gateway out. This is seeing the world through a suicidal lens.

These thoughts are the chronic pain sufferers’ dirty little secret, dirty because to follow through on such a final act is extremely selfish and destructive to all those who care about them. Generally, I imagine such thoughts remain unspoken. I suspect that many people driven by health issues into ending their lives, failed to share their plans with their loved ones and were caught up in a mental spiral of unbearable anxiety and pain. In my case, I took the decision to reach out and share these thoughts with my sister and her loving acceptance of these mental expressions of my distress, formed the bedrock of a shared journey. On one weekend, at her suggestion, we did a joint meditation where we each held on to a scarf and she guided me through the feelings of connection in feeling the pull at the other end of the scarf and that I could carry that memory of connection into the following week. So I got into the habit of sharing with her my feelings of wanting to die, when these were particularly acute. Thus together we faced the darkness. And we often meditated together which was a powerful way to reduce the anxiety of the situation and I emerged from these joint meditations more relaxed and able to enjoy the evening ahead with her and her partner John.

For what started as a twinge of sciatica down to the foot on a car journey near Lyons back in early summer of 2017, had turned into an existential fight for survival, battling not only pain surges that ebbed and flowed throughout the day, everyday, but the mind as well; not to act on what logic suggested, that there was no point in living a joyless painful life, one that had shrunk the comfort zone to lying on my side on a bed, and avoiding spending more than 4 hours vertical at any one time. Daily life where depression had stripped me of all interests other than a forlorn attempt to find a cure to what now I was told was centrally driven chronic pain. Pain in other words, was being manufactured by a psyche and central nervous system damaged by chemotherapy, where the pain signals were left on high volume, stuck there unable to abate on their own. And where, as the medical literature confirmed, opioid use was only of limited value.

What I did find effective was the gadget lent to me by Caroline, my cousin’s wife. This was a Tens machine which by attaching four electrodes to the lower back and upper buttocks, sent out a small electrical pulse which helped to mask the pain, by superimposing a gentler sensation. I wore this machine everyday all day for almost two years. It was very effective, particularly in what I called the witching hour, the difficult time bridge between my morning opioid dose and my evening one. In other words, coverage was thin in the last hour of the morning dose to the first hour of the evening dose. I had to manage carefully what I was doing or who I was seeing at this time. Ideally I rested these two hours on a bed, absorbed in some TV show or listening to the radio. It was also useful to be with someone then, as conversation was a good distraction. Generally, pain was at its most acute in the first half hour of the evening dose and I would trust each time in the effectiveness of the opioid bridge to kick in within 45 minutes which it did every time. Thus dependency was born, inevitably since I have been on very strong opioids for two years.

Of course opioids have nasty side effects to do with the digestive system, in slowing this process down. Constipation is the enemy of drug cocktails. The thought of constipation terrified me more than my pain, and I suffered the consequences; Initially, I depended on the chemical laxatives my doctor provided, but eventually I ended up in A&E having overdosed on them by accident in trying to unblock myself. Occasionally, I faced the horrors of manual extraction, but in 2018 learnt to manage better thanks to advice from experienced friends, with natural methods such as juicing, good fibre, diets and other products such as senna and glycerine suppositories which came to be part of my daily life. You cannot be with a person on opioids without knowing how much they suffer and worry over the side effects. I was blessed in 2019 by discovering from a colonic therapist the benefits of magnesium hydroxide which oxygenates the colon and facilitates a comfortable experience. Every GP in the country should be dispensing this rather than the usual chemical fare. Enough said on this subject.

So 2018 progressed with me, a prisoner of my experience, afraid to travel, and pretty much afraid of most activities that people take for granted. I was happiest knowing that my bed was never far away, and I always had extra meds in my pockets, a spare Tens machine, batteries and electrodes at home, and the Oramorph morphine at the back of the cupboard as well as my little breakfast pot well hidden. And thus the story could end here, in one repetitive daily loop of surviving another day in the vague and irrational hope that surely life could not be so cruel as to offer only hopelessness. I saw a future where my body became accustomed to these high levels of opioid painkillers, where I had to increase the dosages and where eventually the pain would break out in protest into full blown fibromyalgia, one of the worst terrible human conditions.

But during these months and underneath these destructive thoughts, lay another reality. And that was, that I chose to live, each day as a loving act to my loved ones, all those I cared about. If I couldn’t do it for myself, I would struggle with the condition without hope of release, simply to avoid the terrible consequences of leaving this world. Every day we all choose to live, consciously or unconsciously, rejecting the choices to swerve a car into a wall, to fall from a great height to walk into a busy road or drink some terrible concoction. Instead we go about our daily lives in the normal way. If we think about it, we choose life with every breath we take.

So what started with a fleeting glimpse of the No Self reality on a Portuguese hilltop back in the summer of 2017 had descended into a state of consciousness where pain and I were one. Spiritual teachers as I mentioned before, refer to the observer of pain as being pain free, but my experience seemed to suggest that any self referral of the attention away from outer distraction fell into pain consciousness. Pain and I were, within months, apparently the same and the only escape from pain was to escape any self reference. Consciousness was like a torch beam; when shone on the physical self, it would scan my lower back and buttocks almost as a reflex, and of course a pain signal would come back; it lit up with a sensation of pain. If the light of attention was put on objects away from the body, such as the radio, television, anything non sentient in my consciousness, then they mirrored back only their content and I would be pain free. Thus my world became binary. Self attention equalled pain, away from self, just time passing in neutral, the self forgotten in an animated conversation with friends or others. Here lay a clue, unknown to me, a key on the path of consciousness. Possibly a way out. Its name, I came to know as Neuroplasticity, a term used by a successful pain doctor in the Bay area in the United States to describe the brain’s infinite capacity to re-invent itself.

Final part – The Ascent – to be continued.

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