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]; the right leg no longer moves or spasms.

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 anaesthetics 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, unstoppable 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 a rehabilitation specialist. It didn’t always help! Eventually, I have developed my own pain management approach and strategies.


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]


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! Before I left the ward, I did stand up to get things from the cupboard above while holding onto the bench top.

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.


© 2018 KKLokePhD

NEXT POST:  Last Walks, Oct 31, 2018


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

31. Yearning for the Sea: Who Will Wheel Me There?

Gardenias wear crystals on their foliage. 
Lemon Grass dances gracefully in its semi-translucent outfit. 
The winter sun nourishes the potted Bay and Basil 
and warms up my north-facing patio.


Snow Flakes dancing against a clear blue sky, 
          like wave trains with white crests in the vast blue sea, 
                    racing to reach the beach.

What is it like by the sea today?
Have the sea and the sky become one blue entity? 
Does the winter sunshine warm the sea breeze? 
Are there strong waves crashing against the rocks, 
     producing rich, healthy negative ions?


Are there curious children playing on the beach?
Are there contented retirees strolling along the esplanade?
Are there patient anglers waiting mindfully on the jetty?
Is there a wheelchair user meditating under the huge banyan tree?

In my fish pond,
a lone purple water lily and a lone gold fish
enjoying with me 
          the soothing flow of the small fountain,
               punctuated by an occasional F major note from the wind chime,
          and the melancholic melodies of Elgar’s Cello Concerto,
               played by the legendary Jacque du Pre;
with me,
     far, far away,
          from the sea
               I yearn to see.

Who will wheel me there?


Photos Credits:

Snow Flakes. “Euphorbia leucocephala closeup” by Tauʻolunga – Own work. Licensed under CC BY-SA 3.0 via Wikimedia Commons, via – https://commons.wikimedia.org/wiki/File:Euphorbia_leucocephala_closeup.jpg#/

Waves in Pacifica. By Broken Inaglory.   Licensed under  the Creative Commons Attribution-Share Alike 4.0 International, 3.0 Unported, 2.5 Generic, 2.0 Generic and 1.0 Generic license. via – https://commons.wikimedia.org/wiki/File:Waves_in_pacifica_3.jpg

Waves in open sea. Author unknown. In public domain.  https://commons.wikimedia.org/wiki/File:Wave_open_sea.jpg

Pounding Waves, Barton on Sea. By Chris Downer. Licensed under the Creative Commons Attribution-Share Alike 2.0 Generic license. via –https://commons.wikimedia.org/wiki/File:Barton_on_Sea,_pounding_waves_-_geograph.org.uk_-_668940.jpg

A jetty (out into the Mar Menor in the Murcia region of Spain). By Xlibber.
Licensed under the Creative Commons Attribution 2.0 Generic license. via-https://commons.wikimedia.org/wiki/File:Jetty_(4676078969).jpg

A Ficus Microcarpa by the sea.  By Forest and Kim Starr. Licensed under the Creative Commons Attribution 3.0 Unported license. via – https://commons.wikimedia.org/wiki/File:A_day_at_the_beach.jpg

A Purple Water Lily.  By Aruna at ml.wikimedia.
Licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license, via – https://commons.wikimedia.org/wiki/File:WaterLily5.JPG

A Gold Fish. By Kyle Lawrence.  Licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license, via –  https://commons.wikimedia.org/wiki/File:Gold_Fish_in_Chinese_Gardens.JPG 


© 2016 K-KLokePhD