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


 

01. The Tumour

Blue-ringed Octopus at night. Taken at Blairgowrie Marina, Victoria, AU. Photo by Saspotato.

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More than three or even four decades ago,
a tiny, docile blue-ringed octopus
mysteriously
made its lair in my spinal cord.

It had been thriving,
slowly and steadily,
undetected,
until eleven years ago.

It extends its eight long, flexible arms
in all directions,
to siphon off nerve tissues and cells
as it pleases.

It liquidises its prey
to make minute cysts
that slowly combine
to become larger cysts.

It wrecks widespread nerve damage:
cuts off nerve communication with a burst of ink
and paralyses with a shock of venom.

Destruction from neck down to lumbar.
Progressively,
new types of pain,
new pain patterns,
new pain locations,
greater disability.

 

 




Blue-Ringed Octopus. Photo by Saspotato, in public domain, via -
http://commons.wikimedia.org/wiki/File:Hapalochlaena_maculosa.jpg