43. Chronic Neuropathic Pain Management (1): The Big Picture

[Numbers in square brackets refer to posts listed on the right and those listed on the Home Page/Archive.]

Back in 2004, I was put on Gabapentin, starting on a low dosage and progressively increased to the maximum dosage of 300mg x 4 capsules x 3 times per day [42]. It seemed to reduce the acute pain and tightness in the feet [15] and around the lower chest wall [03] to a certain extent. However, there were frequent flare-ups with increased pain [20, 25].

For three times, the pain was so persistently severe and intense that I felt I could no longer cope with it and I asked my GP to hospitalize me with the hope that the pain specialist could help me to reduce it. However, the only thing they did was to prescribe me pain killers on top of Gabapentin. There were two problems: adverse reaction and break-through pain. [42]

First, it was Fentanyl in 2006, which made me vomit both solid foods and fluid after just three patches (stopped); then Oxycontin with Oxynorm for break-through pain in 2011 (just a short period); and Jurnista (hydromorphone) with liquid Dilaudid (Hydromorphone hydrochloride – never taken) in 2014 [42]. I no longer take any of these pain numbing medications.

Besides the adverse reactions, the first-line pain killers did not actually reduce the pain much. Even while I was in hospital taking them, there were frequent flare-ups [20, 25, 36], to which they would add a break-through pain killer, which, again, did not always help.

My question is: If the pain killers are effective, why should there be break-through pain? What causes the ‘break-through’ pain (flare-ups)? Apparently, it “comes suddenly and reaches peak intensity within three minutes and normally lasts 30-60 minutes”. However, my flare-ups usually lead to prolonged pain with increased intensity and very often slowly extends to wider areas [23, 36]; sometimes it lasts for days. They are not always end-of-dose failures pain either. Why? There must be some other factors involved.

I noticed too that, sometimes, some of the prescribed pain killers did reduce the pain to a certain extent in terms of intensity and duration but other times they were completely useless and the pain actually got worse! Why? Why was it that my 48-hour cycle of alternate good-bad days often remained the same despite taking one of these pain-killers? There should have been only good days, no bad days.

There must be other factors involved.

I started paying attention to my activities (what, how, where, when, how long), my postures (sitting, lying, duration), my diet, my supplements, my moods, the weather, etc., in relation to my pain types, patterns, locations, duration, intensity, and quality. That is, I look at the big picture and take a holistic approach.

Over the years, through informal observations, notes taken, analyses, deductions, trials and errors, and so on, I have found the following factors that can affect the intensity, duration, character, and even patterns and locations of my chronic pains. These are also the factors through which I have eventually learned to manage and cope with my chronic pains and thus improve the quality of my life to a certain extent.

THE PHYSICAL FACTORS:

Contacts with Physical Surfaces: Long term contacts creating new contact pain or aggravating existing neuropathic pain: mattress, wheelchair cushion, backrest, arm rests, left hand grip, footplates, calf supports, shoes, bedrails, handrails. These are frequently reviewed and improved on as much as possible but some are almost impossible.

Postures: Prolonged and inappropriate sitting and sleeping postures bring escalating pain all over the body. Through observations, analyses, deduction, trials and errors, I have found postures that minimize pains.

Activities: Too much house work with careless stretching out, turning, twisting, and bending of the upper torso. I have developed strategies to minimize the effects.

Exercise and light massage: Lack of exercise resulting in muscular stiffness, joint paints, bad circulation, more pains. I have developed stretching exercises and light massage of my thighs, calves and arms.

THE INTERNAL FACTORS: TO IMPROVE MY HEALTH IN GENERAL

I decided to improve my health in general: diet, supplements, exercise, sleep, deep breathing and meditation.

Food & Fluid Intake and Diet: Acid-forming foods like sugary and starchy foods and drinks, and milk products intensify all the different types of pain. An alkaline-forming diet focusing on plant-based foods is far more helpful.

Sleep: Insufficient and interrupted sleep resulted from severe pain and the need to roll over every 2-3 hours to prevent pressure sores; sleepiness during the day. I usually trey to take a nap during the day.

Stress, Anxiety, Worries, Social Isolation: Mental stress, anxiety and worries intensify pain, making it more intolerable. Stress from overnight carer shortage problem looms over many other problems.

Supplements: Especially magnesium, vitamin B6, calcium and vitamin D3, probiotic, turmeric.

Deep Breathing: I have been practicing deep breathing for a very long time, useful in calming the mind to cope with the chronic pain.

Mindfulness Meditation: I find mindfulness meditation useful in quieting my chronic neuropathic pain to a large extent.

Creativity:  Keeping the mind creatively active. It also serves as a distraction from the persistent pain.

THE EXTERNAL FACTORS:

The Weather: Too cold, the pain in my lower body, esp. the feet, intensifies; too warm, the feet swell and feel tightly bound; overcast leading to rain or storm is worst. I have become very weather conscious and learned to keep myself warm or sufficient cold. Running the air-con 24/7 costs a lot.

File:Niagara falls panorama.jpgNiagara falls panorama from Canadian side

THE BIG-PICTURE OF A HOLISTIC APPROACH

Therefore, my big-picture approach is (1) to differentiate and identify types of pains in relation to their patterns, duration, intensity, quality, locations, etc., (2) to identify the contributing factors to the escalation and aggravation of pain, (3) to manage my chronic neuropathic pain with a holistic approach, paying attention to improving my general health (in terms of diet, supplements, etc.) and improving my activities, postures, mental state (with deep breathing and mindfulness meditation).

Each will be described in more detail in subsequent posts.

[NEXT POST: Chronic Neuropathic Pain Management: Holistic approach to health]

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Niagara falls panorama from Canadian side, 2007, by Sbittante, from Source: http://stefanobittante.blogspot.com/2007/06/niagara-falls-panorama.html
This file is licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license.at https://commons.wikimedia.org/wiki/File:Niagara_falls_panorama.jpg

42. Chronic Neuropathic Pain (3): Reactions to Prescribed Pain Killers

[Numbers in square brackets refer to posts listed on the right and on the Home/Archive page.]

Back in 2004, immediately after that fateful ‘simple’ biopsy operation on the spinal cord tumour [01], I woke up with tightness around my lower chest wall [03] and burning and crackling sensations from buttocks down to my toes [07]; my left leg was numb to the touch but right leg was hypersensitive to the softest touch [03, 15, 40]! The onset of chronic neuropathic pains [03, 40]! Since then I have been enduring chronic, acute and often excruciating neuropathic pain. The pain was originally confined to around the lower chest wall [03] down the whole lower body [08]. The worst pains were the sharp piercing pains in the buttocks [16], the pricking pains in the thighs [08], the hot barbed-wire-wrapped in the calves [13], and, especially, the tightly bound, burning feet [15, 21, 24, 27] – all areas of contact from which I have no escape! Over the past 14¾ years, it has gradually extended, first to the whole hot-stones-covered back [08], then to the needle-pricking upper chest [19.2], and now the nagging pain in the whole arms [33], from burning shoulders, stiff neck [26] to over-loaded-pin-cushion finger tips.  The pain in some of these locations must have been resulted from or aggravated by long-term contact, e.g., the buttocks and the thighs (wheelchair cushion), the feet (footplate), the whole back (backrest), the forearms and elbows (armrests), the hands (handrails of bed).

So much pain and such long suffering as a result of a ‘simple’ biopsy operation!

Over the past 14 years and 10 months, I have been put through various prescribed pain killers for the chronic neuropathic pain and spasm  [05, 06, 12, 14, 17, 22].

After the ‘simple’ biopsy operation, the neurosurgeon prescribed me 8 Panadol (paracetamol) tablets per day, most likely for post-operative pain. It was (and is) completely useless for neuropathic pain and it gave me constipation. In all the 1.5 weeks I was in his surgery ward, he never treated my neuropathic pain because he never admitted that I had sustained nerve damage as a result of the operation performed by him. In fact, when I described the internal crackling and burning sensations in my lower body (demonstrating it by opening and closing my right fist) [08] and asked him what it was and why, he just said, ‘I don’t know’, non-convincingly. Is it possible at all that a neurosurgeon does not know or recognise the symptoms of nerve damage or spinal cord injury?

All he did was getting me a private physiotherapist (whom I had to pay out of my pocket), while waiting for a specialist in a spinal injury unit of another hospital to come to examine me, who actually took more than a week to come. He examined me carefully and diagnosed that I had indeed sustained ‘nerve damage’, i.e., a spinal cord injury.  The neurosurgeon then arranged to have me transferred from the Surgery Ward of his hospital to the Rehab-Geriatric Ward in another hospital. The transfer was the recommendation and arrangement by a rehab doctor from his hospital who actually ‘owed’ him ‘a favour’.

I eventually stayed nearly 3 months in the second hospital, spending much of the mornings and afternoons repeating the exercises prescribed by the physiotherapists to prepare me to be an effective wheelchair user with the help of a young occupational therapist.

Gabapentin (Neurontin) (since 2004)

Meanwhile, the acute pain was still very real but I was still hoping it was temporary and that it would eventually subside. Of course, it wasn’t temporary and it didn’t subside. It seemed to get worse and worse and more and more unbearable. I was never keen in taking pain killer, but the pain was so unbearable that I eventually accepted the lowest possible dosage of Gabapentin (just one 300 mg capsule a day) prescribed by the rehab specialist and gradually increased to two capsules and then three capsules per day. It seemed to help, but inconsistently. My right leg was still hypersensitive to touch.

Meanwhile, I continued to do all the arm exercises, prescribed by the physiotherapists, to strengthen my arms for self-transfer. I was also taught self-transfer techniques and strategies by the occupational therapist and I soon put them into practice using a manual wheelchair on loan from an association of which I had just become a member.

After being discharged from the hospital, I was put on an outpatient rehab program at another (public) hospital for three months. While I made progress in mobility and self-transfer, my chronic neuropathic pain increased in intensity. The spinal injury rehabilitation specialist I visited every three months progressively increased the intake of Gabapentin from one capsule three times a day (300 mg x 1 x 3 = 900 gm), first to 2 capsules (1,800 gm), then to 3 capsules (2,700 gm), and finally to four capsules to the maximum dosage of 3,600 gm. It seemed to reduce the pain in the feet and the tightness around the lower chest wall to a certain extent. But there were frequent flare-ups with increased pains [20, 25].

A pain management specialist in the same hospital, who explained the concepts of ‘pain threshold’ and ‘pain tolerance’, to me, maintained that if pain killer was started as soon as pain was felt, the dosage could be low; but once it had escalated to a high level, a higher dosage would have to be taken and maintained.

Now that I was already on the maximum dosage, I would have to maintain that indefinitely.

I noticed that my pain level and pattern seemed to follow an alternate good-day-and-bad-day 48-hour cycle most of the time. My pain level could vary from 8-10/10 in a bad day to 2/10 in a good day!

Endeb (Amitriptyline) (briefly in 2004)

Prior to the biopsy operation, I used to visit a musculo-skeletal doctor for acupuncture on my stiff neck and shoulders. He once prescribed me diazepam to relax the stiffness even though I had never complained about any sleeping problem or anxiety. As soon as I found out that it was a tranquilizer, I stopped taking it; I didn’t need it. Now I visited him for chronic neuropathic pain and he prescribed 75 gm Endeb for relaxation, to be taken at night.

Within two days, I started having severe constipation, trembling hands, vivid dreams, day time sleepiness, and profuse hair loss. In addition, to my surprise, I became very ‘chirpy’ the next day, to quote a visiting friend. However, I actually didn’t like it: ‘It is not me!’. I didn’t like the idea that I was ‘made happier artificially’.  My GP reduced it to 10 mg per night; the symptoms reduced. However, when she gradually increased it by 5 gm up to 25 gm, the symptoms returned. It seemed to reduce the acute pain in the feet and enabled me to sleep slightly longer hours at night.

When all the adverse reactions became severe again, I just stopped taking it and have never touched it again. I don’t need it; My GP had never prescribed any antidepressant or tranquilizer before. Prior to the biopsy operation, I had never had problem falling asleep or sleeping straight through 4 – 6 hours.

Blacofen  (Gablofen, Lioresal) for SPASM (briefly in 2004)

in 2004, a neurologist prescribed me 10 gm of Baclofen. The spasm quietened down a bit, but I had profuse hair loss – strands of my black hair were all over the light coloured floor tiles and carpet, and strands of my white hair all over my black Roho cushion and dark coloured clothing! I didn’t want to lose my hair. My GP reduced it to ½ a tablet at night. However, symptoms remained. So, after a little while, I stopped it and has never taken it again. Now, the invisible puppeteer reigned supreme [05, 06, 12, 14, 17, 22]! Until I started taking magnesium regularly.

I now see spasm as the body resetting its tense and stiff muscles. After every attack/episode, my body feel relaxed [28].

Tramal (Tramadol) 50 mg and Tramal SR 100 gm (2005 -9)

Tramal 50 gm was first taken as a trial, only when required. It seemed to be quite effective in lowering pain in the feet within a few hours, thus enabling me to sit up in my wheelchair longer, doing some work.  Later, I started on Tramal 100 mg SR x1 in the morning together with the Gabapentin. It seemed to be quite effective in lowering pain in the feet and lower leg from mid-morning to late afternoon in a ‘good day’, but it didn’t seem to help in a ‘bad day’ even when Tramal 50 mg was taken — it was hardly taken since it caused constipation.

OxyContin (Oxycodone hydrochloride) & Oxycodone (Pain Management at Palliative Care (1) (2006))

After the 2006 radiation treatment on my spinal cord tumour, my neuropathic pain became even more severe. I found it so difficult to cope that I asked my GP to hospitalize me. The Oncologist prescribed 25 gm of Oxycontin and 5 gm of  Oxycodone for breakthrough pain. During the 4 weeks I was there, they didn’t help much. Despite the medication, the pain pattern still followed a 48-hour cycle – one bad day followed by one good day. They gave me ‘dizziness, sleepiness and dry mouth’ Oxydone gave me nausea.

When those didn’t seem to work, she prescribed Fentanyl patches.

Durogesic 25 (Fentanyl 25 mg) Patches (Pain Management at Palliative Care (1) (2006)) (5 patches)  

This caused even more problems: nausea, vomiting, loss of appetite, dry mouth, dry itchy skin.  After 3 patches, I could not hold down any food or liquid. I would vomit after any intake of solid food and even liquid for 2 days. This must be the first time in decades that I had vomited. My GP sent an ambulance to rush me to emergency, where I received intravenous drips for two days. Staying overnight, sharing a ward with three other patients who had to have blood collected in the middle of the night. The collector and the patient would have a loud conversation as if they were the only people in the ward. It was just impossible to sleep at all. I was completely stranded in bed because my fold-up wheelchair was not allowed in the ambulance; a friend had to bring it in to me so that she could take me home. I requested a discharge.

I have never used Fentanyl since then!

The Oncologist was obviously treating cancer pain, not chronic neuropathic pain.

Oxycontine 20 mg x 2, Oxynorm 5 mg when needed (Pain Management at Palliative Care (2) (2011)

However, in 2011, the pain was so severe that I was hospitalized the 2nd time, at my own request, and was sent to a palliative care unit of a private hospital as a public patient.  I was persuaded by the pain specialist and community nurse to go on Oxycontine 20 mg x 2, Oxynorm 5 mg when needed. However, nausea and vomiting, loss of appetite, dizziness, sleepiness, dry mouth were side effects I had to endure during the one year I was taking them. I eventually weaned myself off it.

Lyrica (Pregabalin) 2012/3 (2 months only)

When the expensive Gabapentin was taken off the PBS list (government-subsidized medication) and replaced by the less expensive Lyrica, I gave it a go. However, after a few weeks, I had to go back to Gabapentin because I was experiencing severe edema in the feet, increased neuropathic pain, severe constipation. After a while, I just had to stop it and went back to Gabapentin even though it is now on private script. My private health fund pays just about 50%. for it.

Tricyclic Anti-depressant and Jurnista (Pain Management at Palliative Care (3)) (very briefly in 2014)

In summer 2014, my skin became very itchy and it kept me awake during the night, scratching my arms and legs, leaving bruises all over.  I was at breaking point. The Medical Oncologist sent me to a palliative care unit for pain management. Unfortunately, the condition was aggravated by the lack of air-condition in the special ‘disability’ room I was in! In the height of a hot summer, I had a standing fan on full and covered myself only with a thin bed sheet, BUT my skin itched so much that I woke up frequently to scratch it! Naturally, I became anxious and cranky.

Against my will, I accepted a Tetracyclic antidepressant even though I had never taken any anti-depressant before. The specialist assured me that it was effective for itchy skin.  No, it wasn’t!

The heat and air circulation in the room was so bad that I asked to be discharged after 2 suffering weeks! The symptoms prevailed but I had air-con at home! In the first review as an outpatient, I saw another palliative care doctor at the hospital, I asked to be taken off the medication, and, to my relief, she agreed!

In fact, I found a very simple and effective solution to my itchy skin: moisturizer! Which I had not needed prior to that point. I hadn’t noticed how dry and wrinkled my skin had become! So I wasn’t clinically depressed at all! I had never been.

Jurnista (hydromorphone) (2014 – 2018) + Dilaudid (Hydromorphone hydrochloride) (never used)

For neuropathic pain relief, they persuaded me to go on Jurnista 4 gm x 1 once a day, at night, plus a liquid one called Dilaudid (Hydromorphone hydrochloride) for breakthrough pain. I put it into the back of the cupboard and have completely forgotten about it; I have never touched it; it must be out of date by now!

Again, the palliative care pain management specialist was treating my chronic pain as ‘cancer pain’.

I was supposed to maintain a constant level of the drug to prevent flare-ups. However, I found it silly and illogical taking it when I had hardly any pain sometimes! It is like pumping poison into my system unnecessarily. My GP and chemist advised that I could take it only when I needed it.  Eventually, I stopped it in early 2018 and have never touched it since then.

I am pleased I stopped taking it as I found that there is a “Potential interaction with gabapentin and opioids. Case controlled study showed increased risk of opioid related death when gabapentin given with opioids. Could be a class effect.” (https://www.nottsapc.nhs.uk/media/1251/neuropathic-pain.pdf). There is the additional “risk of severe respiratory depression (MHRA): Gabapentin — rare risk of severe respiratory depression even without concomitant opioids. Patients at higher risk: compromised respiratory function, respiratory or neurological disease, renal impairment, concomitant use of central nervous system (CNS) depressants, and elderly people. Dose adjustments might be necessary in these patients. Could be a class effect.” (https://www.nottsapc.nhs.uk/media/1251/neuropathic-pain.pdf)

Yes, over the years, I have noticed the deep breathing I had developed since the late 70s has become shorter and shallower.

Gabapentin (since 2004)

So, here I am, at the end of 2018, back to square one, taking only Gabapentin for the chronic neuropathic pain resulted from that supposedly ‘simple’ biopsy operation on my spinal cord tumour in 2004, performed by an eager neurosurgeon. Taking the maximum dosage three times a day seems to have become part of my compulsory daily routines like getting up, going to toilet, having a morning shower, getting dressed, taking meals, going to bed, and so on. My system must have got used to it.

Just a few months ago, my GP told me that research shows that increasing the dosage does not necessarily help, and that I could start scaling the dosage down to a level comfortable for myself. Since then, I have progressively scaled it down from 1200 mg x 3 to 900 mg x 3 per day. GP said I could scale it down further according to my needs and that I will have to find out if it actually works for me. I would have loved stopping taking it or any pain killer completely at once! But I haven’t done that. In a way, I am afraid to do so.

The question that goes swirling in my head is: What will happen when/if I eventually stop taking it completely?

My worst fears are: Will my chronic neuropathic pain become even more unbearable? Will my spasm become more violent?  Will I end up developing and having frequent seizures since it is actually an anti-convulsion medication, even though I have never had any seizure before?  

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NEXT POST: CHRONIC NEUROPATHIC PAIN MANAGEMENT (1): THE BIG PICTURE – March, 2019
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41. Chronic Neuropathic Pain (2): “You just learn to Ignore it”

[Numbers in square brackets refer to posts listed on the right and at the Home/Archives page.]

In 2004, after that fateful ‘simple’ biopsy operation on my spinal cord tumour, I spent three months in a rehab-geriatrist ward to learn to be a wheelchair user. There was another ‘long stay’ patient in the surgery ward: a young woman, who had a young daughter, was lying on her stomach on a special self-propelled bench/bed with wheels for her to wheel herself around — a kind of ‘stretched’ wheelchair, like a stretched limousine. She was waiting for an open wound in one of her buttocks to heal. She frequently came into the exercise clinic to receive heat and other treatment to relieve the tense muscles around her neck and shoulders. We gradually got to talk to each other and visited each other in our respective room. One day we had the following conversation.

‘How long have you been in a wheelchair?’
‘Fourteen years.’
‘Do you have pain’
‘Yes, of course.’
‘What’s it like?’
‘Exploding, burning, stabbing, electric shock, and more.’
‘That’s what I have too! Will it ever go away?’
‘No, never! It is chronic! From spinal cord injury.’
‘How do you cope with such constant, excruciating pain?’
‘You just learn to ignore it.’
‘How is it possible at all? The pain is always there!’
‘Yes, it is possible, given the time.’
‘But how?’
‘You will learn to do that.’ .

 

 

 

 

.

It was totally beyond my belief, understanding, and imagination! How is it possible at all to ignore such constantly present, often excruciating, strange sensations in the legs I can no longer move, in the thighs and buttocks that are always in contact with a seat cushion or a mattress, and in the feet that are always firmly placed on the footplate of the wheelchair? There is no practical way to free the painful parts from those contact surfaces unless I could fly up to float weightlessly in a vacuum. [32]

How is it possible at all not to feel all the soundless and invisible crackling, crunching, stabbing, pricking, drilling, pulsating, burning, freezing sensations that are constantly going on from my lower chest wall down to my toes! [03]  How is it possible not to feel the hypersensitive pain in my right leg when it is touched even most gently? [03]

The pain is there all the time, in whatever position and posture I am in, whether sitting up or lying down in bed, lying on the side or on my back. It is present in whatever I do: eating, showering, talking on the phone, talking to visitors or nurses or the doctor, and repeating the same monotonous arm exercises.

To ignore chronic pain is to ‘intentionally disregard it, that is, to consciously pay no attention to it, not admitting it, not acknowledging its presence or existence. Such a conscious effort may involve denying it, resisting it, fighting against it. My past experience with migraine attacks for nearly 35 years has taught me that the harder I tried to ignore it, to resist it, to fight against it, or to try to stop it, the more intense and debilitating the pain would become, often turning me into a highly stressed, totally helpless, and temporarily incapacitated being!

I didn’t think I could ever manage to intentionally, consciously ignore the ever-present pain. I am always aware of its persistent physical presence and can always feel it. Most of the time, I simply just continue doing whatever I am doing or have to do, amid the pain, despite the pain. It is likely that I simply just take it as background noises like the background music in the shopping centre or sounds and noises outside the house. Sometimes, I am so involved and engrossed in the activity that I temporarily forget about it, not feeling it for a while. However, as soon as my concentration goes, I can feel the pain again straight away. Sometimes, the pain is so acute that I simply can’t do anything at all!

The activity I get myself involved in usually serves to distract myself from pain temporarily, such as solving the seemingly endless pain- and disability-related problems, managing my irreversibly changed life, doing simple housework like laundry and simple cooking, conversing with someone on the phone, reading and answering e-mail, learning something new, doing something creative, searching and researching on-line, reading a book, writing about my experience, listening to music, attending a public talk or a play or an opera or a concert, watching television, listening to the radio, looking at the garden, listening to the birds, listening to the wind or the falling rain, watching the clouds in the sky, watching sunrise in front of my east-facing house, exercising, practicing deep breathing, meditating, reciting mantras.

Perhaps, what actually happens is that, over time, I have progressively got used to my chronic pain lurking in the background, and often continued to work through it, if it is not too severe. Consequently, I must have developed a greater tolerance to the persistent pain.

My overall approach is to have the attitude of facing the pain upfront, embracing it, focusing on it, sinking into it, analysing it, understanding it, knowing it, describing it in detail, metaphorising it [36], so as to identify, differentiate, categorise the types of pain in terms of their locations, patterns, frequency, intensity; and working out the triggers so as to prevent further flare-ups.

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NEXT POST: REACTIONS TO PAINKILLERS, DEC 16, 2018
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Abstract Photography 14, by Mostafameraji, own work, 2016. This file is licensed under the Creative Commons Attribution-Share Alike 4.0 International license. At https://commons.wikimedia.org/wiki/File:Abstract_photography_%D8%B9%DA%A9%D8%A7%D8%B3%DB%8C_%D8%A7%D9%86%D8%AA%D8%B2%D8%A7%D8%B9%DB%8C_14.jpg

Abstract Photography 06, by Mostafameraji, own work, 2016. This file is licensed under the Creative Commons Attribution-Share Alike 4.0 International license. At https://commons.wikimedia.org/wiki/File:Abstract_photography_%D8%B9%DA%A9%D8%A7%D8%B3%DB%8C_%D8%A7%D9%86%D8%AA%D8%B2%D8%A7%D8%B9%DB%8C_06.jpg

Infrared of the Galaxy Sky. 2003. By 2MASS/T. H. Jarrett, J. Carpenter, & R. Hurt.  http://www.ipac.caltech.edu/2mass/gallery/showcase/allsky_gal_col/index.html.
Copyright notice: http://www.ipac.caltech.edu/2mass/gallery/showcase/copyright.html
This file is in the public domain in the United States because it was solely created by NASA. NASA copyright policy states that “NASA material is not protected by copyright unless noted“. At https://commons.wikimedia.org/wiki/File:Galaxies_of_the_Infrared_Sky_.jpg

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40. Chronic Neuropathic Pain (1): Sudden Onset

[Numbers in square brackets refer to posts listed on the right at the Home/Archives page.]

On that fateful summer day in 2004, many hours after the biopsy operation on my spinal cord tumour [01], I first woke from anaesthetics in the evening but only briefly; still sleepy. Vaguely, I noticed my younger sister and my two friends standing at the end of the bed but I could hardly breathe or talk. In my half asleep state, I felt tightness around my lower chest wall, especially on the left, as if someone had wrapped it around with a heavy metal band.

            A Tight Band Around Lower Chest Wall

     Ouch…..!  Ouch….!
     Where has this broad metal band come from —
     Wrapping tightly around my lower chest wall, tying me to the bed?                 
     Who has put it there? Why?                             
     To stop me moving?
     To stop me breathing?
     To stop me speaking?
     Please remove it!
     Please let me breathe!
     Please let me sleep!

I fell asleep after speaking to my sister and two friends, with difficulty and only briefly. As I was falling asleep, I felt my legs becoming heavier and heavier. I was later woken by a nurse (M) who apparently had been turning me every hour or so while I slept. Later in the night, I told him that I could not move my legs; I could not feel my left leg; but my right leg was very painful. He told me that he would report it to the neurosurgeon. Later, another nurse (senior) came in to give me, or to increase the dosage of the intravenous desthemetisone (an anti-swelling steroid), and she told me about it. I asked for the time; it was about 10 p.m. I continued to sleep and felt being turned over a few times throughout the night.

When I finally woke up fully, it must be morning: there was bright sunlight outside the window and I heard trolleys being pushed along the corridor.  I found myself in a single room (in a surgical ward), facing a blank wall with no clock. I still felt a tight painful grip around my lower chest wall.  When I tried to turn to lie on my left to relieve the acute pain in the right buttock, I noticed my lower body did not move! I still could not move my legs!  When I touched my left leg, I could not feel anything! In sharp contrast, when I touched my right leg, I felt such  excruciating pain!  All my right side, from both the lower chest wall and lower back down to the toes was extremely hypersensitive to touch! 

          My Legs: Identical Twins No More [03]

     Drastically, overnight,
     my two legs have stopped being identical twins.
     They have stopped talking to each other.
     Right leg extremely hypersensitive to touch:
          millions of sharp needles
          pricking at my sensitive nerves.
     Left leg completely numb to touch.

In addition,I felt severe pains and strange sensations in my whole lower body that I had never experienced before: there were ‘constant activities’ inside both legs and buttocks: 

      Soundless and Invisible Fire Crackers  [07]

     Many long strings of fire crackers
     bursting and burning
     rapidly but incessantly
     up and down, inside my legs,
     from toes to buttocks,
     making crackling sounds
          I cannot hear;
     giving out hot bright sparks
          I cannot see.

I treated these completely unusual pains and symptoms as post-operative and believed that they were only temporary. I remembered back in 1989, a right-knee arthroscopy left me with temporary discomfort in my right leg for about a week, especially my calf: stiff, heavy, as if I had been standing on my feet from morning to night without resting, which were relieved by gliding the knee up and down while in lying or sitting position. However, these pains and sensations I was experiencing now were completely different.

I would never have imagined that these conditions would be permanent, and that I would become a permanent wheelchair user and a permanent sufferer of chronic, acute neuropathic pain for the rest of my life, as a result of a ‘simple’ biopsy operation on my spinal cord tumour [01], performed by an eager neurosurgeon. 

     Sudden Onset of Chronic Neuropathic Pain
                    (posted on Jan 7, 2015 [03])

    Many long hours after the biopsy surgery,
I wake from anaesthetics—
my entire body wrapped in strange new pain:        

    A tight broad metal band
corsets my lower chest wall—
I can hardly breathe;

    My lower body crackles, crunches
and bursts with sensation—
if only I could stop them.

    My two legs have stopped being identical twins:
right leg is hypersensitive to the gentlest touch;
the left is completely numb.
.

 

 

 

 

.
.

A sudden onset of permanent disability [02] and chronic neuropathic pain [03], and an irreversibly changed life style imposed on me [38], putting an abrupt end to my academic career [39]. Such multiple destruction and suffering for nearly 15 years now after a ‘simple’ biopsy operation! What happened in the operation?  Hopefully, it has never happened and will never happen to anyone else.
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NEXT  POST:  CHRONIC NEUROPATHIC PAIN (2),  NOV 30, 2018
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Jacek_Malczewski_-_Rekonwalescentka.jpg ‎(800 × 600 pixels, file size: 162 KB, MIME type: image/jpeg) (Jacek Malczewski – Convalescent Woman (1882)), posted by Ablakok, 2017. This file is licensed under the Creative Commons Attribution-Share Alike 4.0 International license. At  https://commons.wikimedia.org/wiki/File:Jacek_Malczewski_-_Rekonwalescentka.jpg

An example of a person in Pinel restraints, by James Heilman, MD, 2017.This file is licensed under the Creative Commons Attribution-Share Alike 4.0 International license. At https://commons.wikimedia.org/wiki/File:PinelRestaint.jpg

Firecrackers in action in Chinese New Year celebration. Photo by Dr. LEE Sao Bing, who is the Medical Director and Principal Surgeon of Shinagawa LASIK & Eye Centre, Singapore. Photo taken from his personal blog at:  https://drleesb.wordpress.com/2012/01/24/firecrackers-new-year/

Bonfire. Photo from English Wikipedia, 8 September 2004 by Fir0002. This file is liscensed under CC AS-A 3.0Unported License.  At http://commons.wikimedia.org/wiki/File:Bonfire4.jpg

Feux d’artifices rouges, 2008.  Author unknown.  Source:  http://www.photos-libres-de-droits-gratuites.com/photos/Artifices/feux-artifices-pldg007.jpg .  This file is licensed under the Creative Commons Attribution-Share Alike 2.0 France license. At  https://commons.wikimedia.org/wiki/File:Feux-artifices.jpg

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39. Last Walks

[Numbers in square brackets refer to posts listed on the right and on the Home Page/Archives page.]

It has been 14 years and 8 months since that fateful hot summer day in 2004, when my life was turned upside down as a result of a biopsy operation of a spinal cord tumour  unexpectedly detected by MRI. [01] 

     Walked in, Wheeled Out
     (First posted on January 4, 2015 [02])

I walked into a hospital
in a hot summer afternoon in February 2004,
for a biopsy operation on a spinal cord tumour.

The Neurosurgeon said,
‘This is going to be a simple operation for you
because you are healthy and well.
You will be able to get out of bed tomorrow,
                            but I couldn’t
leave the hospital three days later,
                            I didn’t and couldn’t
and return to work a month from now.’
                            I never did                               

Three months later,
I wheeled myself out of
the rehabilitation ward of another hospital.


The biopsy operation resulted in ‘incomplete paraplegia’ – I couldn’t move my once good right leg [09] and I had spasm in my left leg [04]. The right leg became hypersensitive to the softest feather, but the left leg was completely numb to the roughest brush [03]. And
I never stand upright or walk freely again.

When was the last time I stood upright? When was the last time I walked upright? Where was I? What was I doing? Who was with me? How did I feel? When and where were my last upright walks leading to that fateful day? 

Summer, 2004.  Intensely hot and dry.  Midday. Wondered how much UV light my broad brimmed straw hat and reflective umbrella managed to filter out. My face seemed to have become a block of burning wood, dying for a big splash of chilled water. My loose, long-sleeved, thin, cotton blouse was flowing gently towards the back, and my below-knee, cotton skirt was like a heated, thin metal sheet wrapping around my body. My feet were also on fire. Walking along the long, exposed, above-ground walkway was like walking on a track of burning charcoals in a fire festival, or bathing in a big, hot fan-force oven with heat waves bombarding from all directions. Even the occasional breeze was like a stream of hot wave from a suddenly flung open big oven nearby. I was like a lone traveller staggering along in a hot desert, eager to reach an oasis or a shelter.

I had just finished two weeks of teaching the intensive course in the summer school, for the fifth time. Once again, I managed to cover 13 weeks of one semester’s work in ten 3-hour mornings of seminars and workshops. Relieved. Exhausted. Cranky. Feeling even more difficult to cope with the nagging pain along my spine and lower back.

I would never have imagined that this would be my last summer school teaching — in fact, my last teaching day! And my last walk along this long, exposed, above-ground walkway from the classroom to my office, with one hand holding an opened, heat-reflective umbrella against the hot sun and another hand dragging a heavy trolley full of teaching materials, handouts, a recorder, and a big bottle of precious drinking water.

About a month later, when the new academic year started, I didn’t go into the classroom. I was going on a one-month medical leave. I handed over my usual teaching to another lecturer. On Friday, February 20, 2004, late afternoon, I switched off the computer, tidied up the desk and locked up my office. I expected myself to resume my duties after the medical leave. I then walked out of the building to the car park. My last walk at work. Never would I have imagined this would be the last time I drove my car off campus. The end of my sadly missed academic life.  

On Tuesday, February 24, the day before the biopsy operation, accompanied by my sister (KC) from overseas and my friend (M) from Sydney, I dragged myself to the supermarket and did our grocery shopping for the week. We bought plenty of fresh vegetables (broccoli, beans, zucchini, eggplant) for cooking and for salad (lettuce, tomato, cucumber, capsicum, fennel, celery, carrot, rocket, basil), fresh fruits, brown rice, breads, seeds and nuts, cereals, butter, jam, eggs, fresh pasta and sauce, yoghurt and ice cream, snacks, etc. The last time I ever walked upright in a supermarket.

On Wednesday, February 25, morning, just like going to work every morning, I walked out of my bedroom, through the dinning room, kitchen, sitting room, and up to the front doors and locked them up. I walked out of the house into the garage and locked up the garage doors and set the house alarm. I then got into the car, but I didn’t drive down the steep driveway to go to work. I got myself driven down the steep driveway to the hospital for the biopsy operation. Those were my last upright walks at home and from home.

On this very sunny, hot summer day, with apprehension, I walked into a private hospital, accompanied by my sister (KC) and two friends (M and Sh), for a ‘simple biopsy operation’.

The operation was scheduled at 1.30 p.m. I was warded in the morning in a room with other patients waiting to go into the theatre  too. We were partitioned by curtains penetrated by whispering and quiet speaking — calming fears and giving blessings? While lying on my back, waiting, I did my usual morning exercises in bed: I raised my knees up, grabbed them with my hands, and pressed them towards my chest. I raised my legs up to a 90-degree position to my body and then grabbed my feet with my hands and stretched them down to the left and the right. I sat up, bent forward, and touched my toes with my hands. I bent my body down until my head rested on my legs. Then, I bent my legs inwards, so that the soles of my feet could touch each other; then I grabbed them with my hands and pressed my knees down repeatedly. This would be the last time I could do all these exercises without assistance.

I was then given a bar of special soap to have a good scrub of my body under the shower. That was my last standing shower.

After the shower, donned with a one-size-fits-all, over-sized hospital outfit, I walked back to the bed to wait for my turn. That was my very last upright walk on this planet, 14 years and 8 months ago!

 

 

Standing and Walking In my Dreams     

In my dreams in the first few years,
I still saw myself
standing ‘tall and slim’,
walking ‘like a swimmer or dancer’;

doing things I did every day;
doing things I had never done before —
in familiar places, in strange new places,
in bright places, in dark and unfamiliar places.

In my dreams in recent years,
I often see myself in my wheelchair,
doing similar things differently, slowly, cautiously —
sometimes perfectly, sometimes clumsily, 
messily;

having the additional freedom of
doing things I had never done before;
doing things I had always wanted to do —
all successfully, happily!

 

 

 

 

 

.

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NEXT POST : CHRONIC NEUROPATHIC PAIN (1),  NOV 15, 2018
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Zahara de los Atunes, Provincia de Cádiz, Andalucía, España.
Photo by M Peinado, Spain. CCA 2.0 Generic License, via – 
 http://commons.wikimedia.org/wiki/File:006351_-_Zahara_de_los_Atunes_%287426899582%29.jpg

A Desert Wanderer in the Winnemucca dunes, by John Fowler from Plascitas, NM, USA, 2017. This file is licensed under the Creative Commons Attribution 2.0 Generic license.
at https://commons.wikimedia.org/wiki/File:Desert_Wanderer_(27426340729).jpg

A Woman Walking, by Daniel Case, 2016. This file is licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license. at https://commons.wikimedia.org/wiki/File:Woman_walking_in_exercise_clothing_on_Como_lakefront.jpg

A Woman Cooking at Home.  Cuinar_a_casa_3.jpg. 2015. Sourced from: https://www.flickr.com/photos/128390842@N06/16322582654/ 
This file is licensed under the Creative Commons Attribution-Share Alike 2.0 Generic license. at https://commons.wikimedia.org/wiki/File:Cuinar_a_casa_3.jpg

Australian wheelchair basketballer Liesl Tesch looks stoked during 2000 Sydney Paralympic Games match, by Sport the Library, sourced from Australian Paralympic Committee/Australian Sports Commission, 2000. This file is licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license. at https://commons.wikimedia.org/wiki/File:141100_-_Wheelchair_basketball_Liesl_Tesch_stoked_3_-_3b_-_2000_Sydney_match_photo.jpg

A Wheelchair Dance. Ukrainian dance duo Vladimir and Snezhana Kernichnye. World champions 2013. On sports dances on wheelchairs. Masters of Sports of International class. Rec invasport, Donetsk, Ukraine. By Ar4en, 2014. This file is licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license. at https://commons.wikimedia.org/wiki/File:Kernichnye.jpg

Skating in cardinal during the 2006/07 season. By Jeremy vandervalk at English Wikipedia, Transferred from en.wikipedia to Commons by Magog the Ogre using CommonsHelper. This work has been released into the public domain by its author, Jeremy vandervalk at English Wikipedia. This applies worldwide. At https://commons.wikimedia.org/wiki/File:Skating_2.jpg 

Baile flamenco en el museo de Baile Flamenco de Sevilla. (Flamenco dance at the Flamenco Dance Museum in Seville.) by Schnobby, 2014, Sourced from File:Flamenco in Sevilla 03.jpg, This file is licensed under the Creative Commons Attribution-Share Alike 4.0 International license.  at https://commons.wikimedia.org/wiki/File:Flamenca_001.jpg

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38. My Irreversibly Changed Life (1): Managing Disability, Chronic Neuropathic Pain, Spasm, Illness

This is an introduction to the topics I will be writing about in more detail, to share. [Numbers in square brackets refer to the posts listed on the right and on the Archives/ Home Page.]

An Irreversibly and Drastically Changed Life

Back in 2004, a ‘simple’ biopsy operation of an accidentally MRI-detected spinal cord tumour [01] performed by an eager neurosurgeon unexpectedly resulted in ‘incomplete paraplegia’ [02], making me permanently ‘wheelchair bound’ [02, 10.]. It also resulted in  the sudden onset of frequently excruciating chronic neuropathic pain [03] and the sudden onset of spasm on the left side of my body [04].

An irreversibly, drastically changed life with a colossal and complex condition to manage: permanent disability, chronic neuropathic pain, spasm, cancer. Forced retirement with no regular income against huge expenses. House bound.

I was suddenly plunged into a completely new, unknown world in which I must learn to survive, to cope with, to manage, to transcend, to excel [32, 35]. It has been a steep learning curve and a long and challenging journey.

Spinal Cord Tumour

An Astrocytoma, Grade II, in my spinal cord: growing slowly,
not operational, not removable, not treatable, incurable! [01]
A time-bomb ticking.
“Spinal cord tumour patients live very long!”, said the Oncologist.
Which means I am on a long haul with prolonged suffering!
Yes, it has been 14 and a half years now!  How much longer?

Chronic Neuropathic Pain

After I eventually woke up from the anesthetics for the biopsy operation on that fateful day in February of 2004, I felt strange new sensations in my lower body [03]! Constant busting, scrunching, crackling, flickering, sparkling inside my whole lower body: buttocks [16], thighs [04, 07, 12, 27], especially calves and feet [07, 08, 15, 21]. I asked the Neurosurgeon what it was; he said he didn’t know. I later learned from a social worker working with spinal injury patients that it is incurable chronic neuropathic pain! So excruciating, almost unbearable! Eventually, the pain and sensations extended slowly from my lower body [12, 13, 15, 16, 21, 24, 27] upwards towards the upper body [17, 19, 24, 26, 33]. Fourteen and a half years later, it has now reached my neck and shoulders [26], arms [33], hands, fingertips. Chronic pain all over my body. [13, 20, 23, 25, 26, 34]

Pain management immediately after the biopsy surgery merely involved a daily intake of 8 Panadol tablets, prescribed by the neurosurgeon, which was absolutely useless! Later, an initially low dosage of Gabapentin, an anti-convulsion drug found to be useful for neuropathic pain, was prescribed by the rehabilitation specialist. It didn’t always help! Eventually, I have developed my own pain management approach and strategies.

Spasm

Spasm started on the left side of the body 3 days after the biopsy operation [04] and later extended to the right side [28]. Sometimes, gentle and quiet; sometimes, strong and violent. As if manipulated by an invisible puppeteer [06], who likes to play tricks on me! [14, 22, 28]

Disability

I had to spend nearly 3 months in rehabilitation. Somehow, I couldn’t get into the spinal injury department. I was transferred from the surgery ward in the hospital I walked in to a rehab-geriatric ward in another hospital, from which I wheeled home [02]. There, the rehabilitation specialist, physiotherapists, occupational therapists, and social worker  didn’t believe that I would ever stand or walk again and therefore had only the sole aim of training me to lead my life as a ‘competent disabled’, using my hands to wheel myself around and to lift and move my body in self transfers [22] between wheelchair and bed, toilet, shower commode, or another seat (if safe).

I proved them wrong! However,  ….

Managing My Chronic Neuropathic Pain, Disability, Spasm, Illness, Social Isolation.

Not only do I have to cope with and manage my chronic neuropathic pain, spasm and illness, but I also have to live my remaining life as a disabled in a house not built for a wheelchair user [18]. The permanent loss of the freedom of mobility is a great physical inconvenience in a world exclusively designed and built predominantly for walkers. Greater still is the psychological loss of independence: having to depend on carers and helpers for essential assistance, resulting in the loss of privacy.

Chronic neuropathic pain, spasm, illness, disability, dependence, old age: all add up together equals to social isolation. [11, 30.2, 31]

Facing all my difficulties, problems, challenges up front [35, 36], I have developed, over the years, practices and strategies to cope with my multiple impediment, but it doesn’t get any easier as I age.

Sharing and Exchanging

I now share these practices and strategies here with fellow wheelchair users, chronic neuropathic pain sufferers, care providers, healthcare practitioners, pain management professionals and practitioners, physiotherapists, other medical professionals, and anyone interested in knowing how one person manages her chronic pain, disability, illness, and her unexpectedly, permanently changed lifestyle.

Your feedback, comments, exchanges will be most welcome.

 .
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NEXT POST:  Last Walks, Oct 31, 2018
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Hawaii Volcanoes National Park, USA, new lava flow near the Royal Gardens subdivision. by Brian W. Schaller, 2007.  This work is licensed under the Creative Commons ‘Attribution-NonCommercial-ShareAlike 3.0’ License: https://creativecommons.org/licenses/by-nc-sa/3.0/, at https://commons.wikimedia.org/wiki/File:A204,_Hawaii_Volcanoes_National_Park,_USA,_new_lava_flow,_2007.JPG

Trail on a mountain, France. By Tiia Monto, 2015. This file is licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license. at https://commons.wikimedia.org/wiki/File:Mountain_trail_in_France.jpg 

Hiking trail Knight’ Path over the Czantoria Wielka, by Pudelek (Marcin Szala), 2014. This file is licensed under the Creative Commons Attribution-Share Alike 4.0 International license. File:Slezské Beskydy – Rytířská stezka (cesta Nýdek – Velká Čantoryje).JPG , at   https://commons.wikimedia.org/wiki/File:Slezsk%C3%A9_Beskydy_-_Ryt%C3%AD%C5%99sk%C3%A1_stezka_(cesta_N%C3%BDdek_-_Velk%C3%A1_%C4%8Cantoryje).JPG


 

37. Managing My Chronic Pain

Dear Followers, Supporters, Visitors, Viewers, Family, and Friends,

Thank you for your support and interest in my work and your comments.

I am back after a long break to do something else, to enrich myself, to contemplate. I now feel that to withhold beneficial knowledge and insight and to safeguard my story as ‘privacy’ is an act of selfishness; and that to share them with the aim of benefiting others is an act of altruism.

Having posted more than 35 poems describing my chronic neuropathic pain, spasm, disability, and illness, I will now be writing mainly in prose with some poems inserted and in between:

To tell my story on how in a very hot summer day in 2004, I suddenly ended up in a wheelchair with chronic neuropathic pain and an irreversible lifestyle for the rest of my life.

To describe how I manage my chronic neuropathic pain, spasm, disability, and illness and my irreversible lifestyle in the past 13 years.

To describe how I deal and cope with the difficulties and challenges I face.

To share the knowledge and strategies I have gained and developed from my experience, with the humble hope that fellow sufferers, their families and carers, health care providers, and medical professionals will find them useful and helpful.

Would love to receive your feedback, comments, suggestions.

I look forward to your continued support.

KK Loke

https://commons.wikimedia.org/wiki/File:Rayon_de_soleil_et_hirondelle_2.jpg

 

 

 

 

 

 

 

 


Sunset over the Vercors mountains, seen from Grenoble (+ a swift passing by).
This photo was taken by Eusebius (Guillaume Piolle). © Guillaume Piolle / CC BY 3.0.   https://commons.wikimedia.org/wiki/File:Rayon_de_soleil_et_hirondelle_2.jpg


 

36. Metaphorising My Pain


 

Reproduced from Pulse – Voices from the heart of medicine (publishing personal accounts of illness and healing, fostering the humanistic practice of medicine, and encouraging healthcare advocacy), in their monthly More Voices series (short nonfiction prose pieces of 40 to 400 words on a healthcare theme): “In Pain”  theme in October, 2017, on Oct. 24, 2017. [The editor has made minimal stylistic changes.]
https://pulsevoices.org/index.php/pulse-more-voices/in-pain/1175-metaphorizing-my-pain

This is more or less a brief summary of some of the 35 posted poems about my chronic neuropathic pain, illness, disability, spasm. The numbers in square brackets refer to the relevant metaphors used in the poems posted, listed on the right on the Home/Archive page.


 

 

 

 

Metaphorizing My Pain
 | 

My chronic neuropathic pain [03] is a physical reality, not a product of my imagination. It is the result of a spinal injury sustained during a “simple biopsy” [02] of a spinal cord tumor [01] detected through an MRI. The operation was performed by an eager neurosurgeon in 2004 [02]. When I woke from the anesthesia, I could hardly breathe [03]; I felt like a tight band was around my lower chest wall [03]. I also couldn’t move my legs [02, 05, 09], and they were extremely sensitive to touch [03]. Since then, the pain has expanded and intensified [12, 13,15, 17, 20, 21, 23, 25, 26, 33, 34, 35].

A typical dreadful day starts when I am woken up by pain all over my body [20, 23, 25]. Hot, coarse sand grains are pulsating inside my calves and thighs [03, 07, 08]; fine nails are drilling into my feet and buttocks [16]; sharp knives are plunging into my back [19.1]; needles are pricking my chest [19.2]; mallets are pounding incessantly on my arms; warm, fine sand grains are swimming inside my palms and puffed-up fingers!

It was another night with bad sleeping posture. My back must have glided off the three standing pillows propping up my back, curving my spine into a bow and pressing part of it against the air-filled pressure-reduction mattress, igniting pain all over my body. My head must have dropped forward off the pillow, compressing my cervical nerves and kindling pain in my arms and fingers.

By the time I finish my four-hour morning routine of sitting up, lying down, being hoisted onto a shower commode to toilet and shower, being hoisted back into bed, being turned left and right several times for grooming, and finally being hoisted down into my motorized wheelchair for the day, I am usually in agonizing pain. My feet feel like they’re on a tray of warm stones [08]. My calves seem to be wrapped with coarse sandpaper [08, 34]. The small, air-filled cells of my Roho cushion are pebbles under my buttocks [08]. My backrest is a stone-studded board [08].

The escalation continues with increasing power over the next 24 hours and beyond. No escape! [29] Except meeting the pain upfront. Just sit upright, keep my spine straight, sit still, breathe in and out very slowly [19.2, 20, 24, 33], guide the qi to the pain areas, be mindful of it [33]: I sink into the pain–identifying it, recognizing it, analyzing its nature, quality, patterns, locations, and triggers, so that I can learn to prevent it from spiraling into another almost unbearable episode [34].

Kit Loke
Brisbane, Queensland, Australia


Marine fog rolls in Half Moon Bay, California. By Jacek Walicki (edited by Chalger).
This file is licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license. At https://commons.wikimedia.org/wiki/File:Marine_Fog_Pattern_1_crop.jpg

Lake Cerknica, by why 137 from Trieste, Italy, Uploaded by Sporti.
This file is licensed under the Creative Commons Attribution 2.0 Generic license.  At https://commons.wikimedia.org/wiki/File:Lake_Ceknica_2013_(8568169722).jpg


34. Neuropathic Pain and Disability: As If Constantly

As if constantly,
my immobile lower body is internally alive with continuously bursting fire crackers;
my tightly bound, pulsating feet are resting on a footplate paved with warm gravels;
my whole legs are firmly wrapped with fabrics laced with angular beads;
.

As if constantly,
I sit on a chair cushion filled with pebbles;
I lean my back on a backrest studded with glass marbles;
I rest my arms on armrests made of warm pellets;
I hold my shoulders up against a heavy yoke;
I lie on a bare rope-bed full of big knots;
.

As if constantly, I am being
punished for a crime I have never committed;
pushed into a battle against an enemy I have never made;
forced to face a challenge I have never encountered;
.

So that I may rise to the challenge, Aurora_Borealis_Over_Mount_Fellows_(7957742884)
to transcend my pain,
to achieve triumph:
triumph over chronic neuropathic pain.

       













.



Aurora Borealis over Mt Fellows. By Denali National Park and Preserve. Licensed under the Creative Commons Attribution 2.0 Generic license. via –https://commons.wikimedia.org/wiki/Aurora#/
media/
File:Aurora_Borealis_Over_Mount_Fellows_(7957742884).jpg

 



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33. Neuropathic Pain in Arms: Rolling Rock

.

Weighing down from each armpit, Certova_skala1_Boky_Reserve
a heavy rock with retractable belt
rolls up and down torso sides,
pressing in pebbles and sharp wires;
zigzags across chest and back,
driving millions of needles into
hypersensitive nerves;
glides down the sternum,
ironing in more sharp needles;
encircles the lower chest wall
into a tightened grip.
.

Escalated pain
refuses to be numbed by crème
or soothed by the softest memory foam
over the new backrest
or on the pressure reduction mattress.
.

Sit still.  Lie still.
Breathe in and breathe out.
Focus on the breath,
in and out, mindfully.
Store qi into the dantian.
Drive qi from the middle dantian
     across chest and back.
Steer qi from the lower dantian
     through the barbed-wire wrapped thighs,
     down to the painful feet on fire.
In   and   out,   in   and   out.
In      and      out,      in      and      out.
In          and          out,         in          and          out.
.

Belts retracted800px-Acitrezza_Faraglioni_Moon_Rise_Sicilia_Italy_Italia_-_Creative_Commons_by_gnuckx_(4840318038)
Activities cease
Temporary relief
Freedom
Peace
.
.

 

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The mushroom stone: cap (andesite volcanic bomb) and stem (volcanic breccia). National Nature Reserve (Národná prírodná rezervácia; NPR) Boky; Slovakia.
Photo by Magda.adgaM. This file is licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license. via-  http://Commons.wikimedia.org/wiki/File:Certova_skala1_Boky_Reserve

Moon Rise in Acittreza, Sicly. Photo by gnuckx.
This file is licensed under the Creative Commons Attribution 2.0 Generic license. via https://commons.wikimedia.org/wiki/File:Acitrezza_Faraglioni_Moon_Rise_Sicilia_Italy_Italia_-_Creative_Commons_by_gnuckx_(4840318038).jpg



 

24. Neuropathic Pain: Wires Cutting Deeply

1280px-Barbed_tape_on_the_Golden_Gate_bridge_in_San_Francisco_136

 

 

 

 

.

Sharp wires strangle my right ankle,
hack deep into fine bone.
Constant pain keeps me awake

A thin, burning wire slices
my right bony sole into two.
Burning pain echoes up the whole leg.

A strong wire pulls the big toe
down towards the sole.
Sharp pain and spasm all the way up the spine.

A fine, tense, rigid wire
deeply and tightly engraves, with fire,
my lower chest wall and across the back.

A slight movement of arms or torso
drives the wires deeper,
tightening the cut further.

Deep cutting wires:
the neurosurgeon’s sharp knives.
Difficult to breathe.

Lying still in bed,
breathing deeply and slowly:
in and out,  in  and  out  ,   in   and   out…..

Chanting:
om mani padme hum ….
om mani padme hum ….

Falling asleep:
descending into peace.
Damaged nerves reconnect, regenerate.

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Tree_in_field_during_extreme_cold_with_frozen_fog

 

 

 

 

 

 

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“BarbedTape1” Photo by Tom Oates. Licensed under CC BY-SA 3.0 via Wikimedia Commons –https://commons.wikimedia.org/wiki/File:BarbedTape1.JPG#/media/File:BarbedTape1.JPG

“Tree in field during extreme cold with frozen fog” Photo by Ian Furst – Own work. Licensed under CC BY-SA 3.0 via Wikimedia Commons – https://commons.wikimedia.org/wiki/
File:Tree_in_field_during_extreme_cold_with_frozen_fog.png#/media/
File:Tree_in_field_during_extreme_cold_with_frozen_fog.png

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20. Chronic Neuropathic Pain Flare-Up (1): Guerrilla Attacks

Kardo_rinktine_02

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Chronic neuropathic pain attacks like guerrilla fighters.
They strike at my feet viciously
till they burn with pulsating pain.
Then they attack the calves, thighs and buttocks
in brief, rapid fire.413px-Royal_Marines_conducting_FIBUA_training_at_Copehill_Down._MOD_45148950
Invisible and inaudible crackling.

My lower body from waist down to toes now sits on burning sites.

They suddenly appear along my spine, raiding, ambushing, sabotaging,
attacking with hand grenades,
location by location,
moment to moment,
until the whole spine is bombarded.

I can hardly sit upright
or lean against
even the softest memory foam.
.
Soviet_guerilla

Sometimes,
they assault my shoulder blades,
plunging bayonets deep underneath,
sending ripples of burning, stabbing pain
all across my upper back,
with invisible bleeding.

Realistic pain:
Impossible for me to lie on my back.

Frequent but unpredictable, random attacks
with machine gun firing.800px-thumbnail
Every nerve in my body is their target.
Every part of my body is their battlefield.
Invisible and inaudible crackling.

Aggravated pain all over my body —
from toes to shoulders,
front and back,
left and right.

Lie still. Relax.
Inhale.  Exhale.
Inhale     .     Exhale     .
I n h a l e          .          E x h a l e        .
I  n  h  a  l  e          .          E x h a l e          .
I    n    h    a    l    e            .            E   x   h   a   l   e            .

Gradually,
a veil descends onto the battlefield.
It gets heavier and heavier,
drowning the machine guns firing;
pacifying the guerrilla fighters.

The attacks have stopped.
For the time being.

.

lossy-page1-800px-Long_Khanh_Province,_Republic_of_Vietnam....SP4_R._Richter,_4th_Battalion,_503rd_Infantry,_17

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Kardo_Rinktine_02. (Kretinga district partisans) (a Lithuanian guerrilla group). Photo (1945-50) by unknown author, uploaded by Julius Kanarskas.
Photo in public domain, via – http://commons.wikimedia.org/wiki/File:Kardo_rinktine_02.jpg

After a hand grenade was thrown.
Photo (2008) by POA (Phot) Sean Clee, MOD, UK.
Open Government License v1.0. via – http://commons.wikimedia.org/wiki/File:Royal_Marines_conducting_
FIBUA_training_at_Copehill_Down._MOD_45148950.jpg

Sub-Machine Gun and Rifle with Bayonet. Soviet Guerrilla.1943.
Russian State Archives. A Ukrainian or Ukrainian SSR work, in public domain  via – http://commons.wikimedia.org/wiki/File:Soviet_guerilla.jpg

Machine Gun Firing. Photo by Marcus Rauhenberger.
Public domain photograph from defenseimagery.mil. via – http://commons.wikimedia.org/wiki/File:A_U.S._Soldier_
assigned_to_the_2nd_Battalion,_503rd_Infantry_Regiment,_
173rd_Infantry_Brigade_Combat_Team_fires_an_M240B_machine_gun_
during_exercise_Combined_Resolve_2013_at_the_7th_Army_
Joint_Multinational_131115-A-BS310-381.jpg

As if asking, ‘Why?’  Author unknown.
US National Archives and Administration.  ARC ID 531446. http://commons.wikimedia.org/wiki/File:Long_Khanh_Province,_
Republic_of_Vietnam….SP4_R._Richter,_4th_Battalion,_503rd_Infantry,_
173rd_Airborne_Brigade…_-_NARA_-_531446.tif

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19. Neuropathic Pain in my Icy Upper Back and Pin-Cushion Chest

.Freezing_Rain_in_Canada_2013_91

19.1. Icy Rain on Back

.
On my back,
an icy cold rain
needles my tight skin, and
penetrates into my nerves.

Sharp, thin ice bladesCalcite-Fluorite-cflo38a
slice deep underneath the scapula,
like repeated plunges of a sharp knife.
Burning blood flows along the spine
down to the lower back.

Invisible, but felt,
intensely,
deep underneath my numb skin.

.

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19.2   Pin Cushion Chest

.

Even leaning my back against
very soft memory foam
on top of the soft cushion
of the wheelchair backrest
is still like lying on a shrapnel-filled mattress.

It brings referred pain onto my chest:
gradually becoming1024px-20070521_Pincushion_Hakea_Flower
a pin cushion overcrowded with
millions of fine needles.

Gentle strokes become raking
millions of needles into my chest.
Movements of my shoulders and arms
drive them deeper;
Coughing sends them into a dance, frantic,
across the chest,
up and down the sternum;
all pricking at hypersensitive nerves,
bringing intense pain.

Sit still. Relax.
Breathe in and out slowly,
till the raking, driving, dancing, pricking subside.
.
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.
Freezing Rain Needles. Photo by Laslovarga.
CC A-S A 3.0 Unported License, via – http://commons.wikimedia.org/wiki/File:Freezing_Rain_in_Canada_2013_91.JPG

Thin, translucent, bladed calcites with flourite. Photo by Rob Lavinsky / iRocks.com – CC-BY-SA-3.0, CCA-SA 3.0 Unported License, via –
http://commons.wikimedia.org/wiki/File:Calcite-Fluorite-cflo38b.jpg

Flower of Pincushion Hakea Laurina in Bonbeach, Victoria, Australia.
Photo by Ian Fieggen. CC BY-SA 3.0 License, via –
http://commons.wikimedia.org/wiki/File:20070521_Pincushion_Hakea_Flower.jpg#/
media/File:20070521_Pincushion_Hakea_Flower.jpg
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18. In a House not Built for a Wheelchair User

.

After three months in hospital, I returned home
to a house not built for a wheelchair user.
.
.

Even at snail speed,
my manual wheelchair can’t scale upWheelchairRampAt2500AugustineBlvd
the steep driveway.
At its top, the wheelchair
can just squeeze into
the small front porch
but can’t hop over the threshold.
Now I make a grand entrance
up a custom made ramp
through the garage into the hallway.450px-Roraima_Rampa

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Suddenly,
my home has become a strange land:
In the kitchen I enjoyed creating new dishes,
wall mounted cupboards have become summits;
floor standing cupboards, deep
underground caves;
bench top, a high plateau;
cook top, a land of fire hazards;
kitchen tap, unreachable water source;
wall sockets, tantalizersEntradaCuevaConejar
at the furthest corner.
All inaccessible now.

Gasherbrum2

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The top shelves of book cases, food cupboard, airing cupboard, and
walk-in wardrobe are
Himalayas summits
only for carers to reach.
I keep my basic essentials
in the lower base camps.

.

The elegant hexagonal sitting room has become
an overcrowded furniture showroom,
to allow more space in the frequently used dining area,
surrounded by reachable racks, drawers, and table tops.

.

The cozy ensuite the wheelchair can barely squeeze in.
The shower cubicle I can no longer hop into.
I transfer onto a specially made cushioned chair
securely placed across the bathtub,Wheelyboat_at_the_Corbet_Lough,_near_Banbridge_-_geograph.org.uk_-_1400565
to shower into it,
holding onto a handrail on the wall,
like sitting in a stationary boat.
But I have to disembark later
to use a shower commode
in the modified ensuite.

.

All of the taps in the bathroom and kitchen
need longer handles and spouts.
The toilet has handrails installed on the walls
to help me make a stand up transfer
between wheelchair and toilet seat.

.

From the hospital’s pressure reduction mattress
back to my firm chiropractic mattress
is a shock to my painful neuropathic buttocks, legs and back.
Thick, soft, medical grade sheep skin rugs
now feature 
among pillows for popping up my back
when I sleep on my side.
.
.

In a house not built for a wheelchair user,
I can still go down a ramp
out into the backyard garden pergola,
early in the morning,
to practice deep breathing and meditation,
amidst birds singing, yodeling, whistling, twittering, chirping,
and the murmuring of the distant traffic.

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Korea-Minhwa-Hwajodo-flowers_and_birds-01

'Birds_and_Flowers'_by_Imanaka_Soyu,_Taisho_period,_LACMA_I


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A Wheelchair Ramp. Photo: author unknown.
CC BY-SA 3.0 Unported License,  via Wikimedia Commons –
http://commons.wikimedia.org/wiki/File:WheelchairRampAt2500AugustineBlvd.jpg#/media/File:WheelchairRampAt2500AugustineBlvd.jpg

La Rampa, Mount Roraima, Venezuela. Photo by Portodaspartes.
CCA 2.0 Generic License, via Wikimedia Commons –
http://commons.wikimedia.org/wiki/File:Roraima_Rampa.jpg

Entrance to Cave Conejar, Spain. (Entrada de la Cueva de El Conejar, en Cáceres, Extremadura (España)).
Photo by Mario Modesto.  CC A-SA 3.0 Unported License
http://commons.wikimedia.org/wiki/File:EntradaCuevaConejar.jpg

Gasherbrum II, Camp at elevation 5900 m, Karakoram, Pakistan.
Photo by Olaf Rieck. CC A-SA license.
http://commons.wikimedia.org/wiki/File:Gasherbrum2.jpg

A Wheelyboat. Photo by Albert Bridge.
CC A-SA 2.0 License,  via Wikimedia Commons –
http://commons.wikimedia.org/wiki/File:Wheelyboat_at_the_Corbet_Lough,_near_Banbridge_-_geograph.org.uk_-_1400565.jpg

‘Hwajodo’ (Flowers and Birds), a genre painting of Minhwa (Korea folk painting), Joseon Dynasty,  Korea.
Author Anonymous. Public Domain work of art,  via Wikimedia Commons
http://commons.wikimedia.org/wiki/File:Korea-Minhwa-Hwajodo-flowers_and_birds-01.jpg

‘Birds and Flowers’ by Imanaka Soyu of Taisho period, Japan.
CC0 1.0 Universal Public Domain Dedication License,  via Wikimedia Commons –
http://commons.wikimedia.org/wiki/File:%27Birds_and_Flowers%27_by_Imanaka_Soyu,_Taisho_period,_LACMA_I.JPG



17. Spasm: Waves of Pain on Left Side of Body

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428px-The_big_one_(161967995)

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Waves of severe pain surge
from foot up to shoulder
along the left edge of body.

Waves of raging pain gush
from toes up along calf,
ebbing underneath the knee.

Waves of gnawing pain crawl
from knee up along the thigh,
lodging at the buttock.

Waves of nagging pain run
from elbow up along the arm,
fading before the shoulder.

Flow and ebb. Ebb and flow.

Breathe  in  ;   breathe  out  .
Breathe    in    ;    breathe    out    .

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 Porto_Covo_December_2014-4

 

 

 

 

 

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Waves crashing at Red Sand Beach, Hana, Maui (Hawaii).
Photo by Angela Sevin from SF Bay Area, US. CC A 2.0 Generic License, via –
http://commons.wikimedia.org/wiki/File:The_big_one_(161967995).jpg

Surfs at Sunset. Porto_Covo. Portugak.  Photo by Alvesgaspar.
CC AS-A 4.0 International License, via –
http://commons.wikimedia.org/wiki/File:Porto_Covo_December_2014-4.jpg

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10. My Wheelchair

.
Now an indispensable object besides my bed,
an inseparable part of my life:

We call it The Vehicle.
I am the driver, indoors, capable of
narrow hallway manoeuvres and
razor-sharp turns
in a house not built for a wheelchair user.

My originally spotless, well-maintained home
now bears scars of frequent accidents.
All doors and plasterboard walls
are defenceless against the metal parts of
     the back canes, the armrests, the footplates.
Two big holes on the walls from front-on collisions.
Two parallel rows of dents and scratches look like
     underground rail tracks with stations.
Even the hardwood sideboard top has deep scars.
The legs of the wooden dining table and chairs
now wear permanent straps.
Every square pillar has chiselled-off corners.
All un-repairable.

It has become my legs, giving me
freedom of movement and mobility
in an otherwise restrictive life.
Oh! Since when have I got used to using a wheelchair,
permanently?
.

Lightweightwheelchair

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A Lightweight Manual Wheelchair. Photo by en:User:Kesafloyd. Work in Public Domain.  http://commons.wikimedia.org/wiki/File:Lightweightwheelchair.jpg