A Biography of Pain

By Christos Dorbis

Diagnosed with a number of chronic illnesses between 2011 and 2014 my life was suddenly changed. I was thrown into a world of medical merry–go–rounds and confusion as I had to learn what was happening to survive body malfunctions. As it is my way, then understand the processes of change thrust upon me by the diseases. As I, like others who have chronic illnesses, have to live in a new and often limiting world until we die.

A three-part exploration of living with diseases that limit and cause me to be crippled by high levels of pain. The bits in between the good times.

1.Learning is the flailing around whilst the medical people and I untangle the different signs and symptoms in a number parts of the body from 2011 to 2014.
2.Understanding the processes of change and effects of diseases on a person overall well–being. Through understanding comes strength to withstand the brutal, unforgiving pain of arthritis flares that hit the body without warning.
3.Challenges for the health systems and health carers of all kinds, some of which I hope will quickly become obsolete. The challenges are to develop a more integrate approach for those diagnosed with chronic illness; and separately to use modern databases more effectively in medical situations.

• Language: English
• Publisher: Christos Dorbis
• Release date: Apr 8, 2019
• ISBN: 9780648521303

Christos Dorbis

Christos was born in the mid 1950s in rural NSW, Australia. Moving to Sydney when I was 7 I spent the next 30 years here undertaking assorted work until I settled on teaching. As a history teacher I went wrong and ended up in the Department's head office with a focus on technology in the classroom. Here I stayed until I was medically retired early with a few genetic diseases.I moved to the fringes of Sydney in the mid 1980s and have lived here since. I now practice being a grumpy old man and gardening, both rewarding.I am happily married with a loving family.

Book preview

A Biography of Pain

Christos Dorbis

Christos Dorbis

Copyright © Christos Dorbis 2019, 2023

All photographs taken by Christos Dorbis

ISBN 978-0-6485213-0-3

For

Bill and Kerrie, Mark and Carolyn, Santino and Teresa: Each couple has found the love to overcome much and inspire.

Graham and Laraine with who with Deirdre and I share much.

Rani who acted as my daimon, her questioning drove me to achieve with greater clarity and purpose.

My family, Deirdre, Magdalene and Alexis each gives me love that is beyond measure.

Wild Rosella

Contents

Why a duck?

No cure, manage

Part I: Learning

How, why and when of it all.

Part II: Understanding

Part III: Challenges

The chrysalis phase or Beginner’s guide to your first months of chronic illness

References

Addendum

It is only pain. It will not physically damage you. – adapted from a t-shirt slogan

Intelligence is a pre-requisite to nothing – author.

I cannot teach anybody; I can only make them think – Socrates

There are only two mistakes one can make on the road to truth: not going all the way, and not starting. – Buddhistic saying

Why a duck? (Coconuts, Marx Brothers movie, 1929)

This book is obviously about my journey in pain. It should have been titled ‘an autobiography of pain’. I am no one special, I am just using my experiences to show how pain through, ‘genetic luck of the draw,’ diseases impact on a person’s life. I have the compulsion to write it out. There is always a hope that some person reading this will benefit from the words written on these pages.

It is circa May 2012. I had been to and fro to my, then doctor, Clare for 6 months. I was expecting results from tests. I knew Clare would ring after 6pm. My anxiety was high as the pain would not abate and hadn’t for months. We all have had short term pain. We know short term pain will end. But unending pain is a different beast. When Clare started speaking, suddenly, I broke down. Tears welled in my eyes, and I said over the phone to her, ‘I just want the pain to end’. It had been six months of unending pain. Often intense and without warning 10/10 pain would strike. It was a sudden onset in August the year before. It would take two years of a medical merry-go-round to unravel a number of chronic illnesses, genetic in origin, which has led me to adapt to a life with restrictions. My current state is an adaption to the pain cycle. As each year passed and it became apparent, I was trapped in a negative cycle; days of high-level pain lead to pain killers and / or steroids. Like all things, understanding is important to reach a position like I am in now, far more balanced, albeit at first it was a matter of just surviving. It was to be the beginning of the pain journey that now, like then, dictates my life. It was to become my new world. I hope in this prequel to the earlier sections of this tome, pre-2019, shows growth and development in how I have learnt to live with pain.

Khan & Mathew know not to offer me anaesthetic to fill a tooth or Invisible illnesses: a curse.

The first written section of this tome was composed when I was in a state of constant pain. It reflects the negatives of my life then, whilst learning. It also has kernels of what I was to become a far more managed person who copes with physical demands of managing a property and daily life. And this has seen me during 2022 use pain killers twice. In comparison 4 years ago, I was on steroids three or four times a year and pain killers frequently. The first time I used pain killers was when I passed 3 kidney stones. Ouch! The second was when I had an intense flare in my lower spine. It helped me sleep through the pain.

Through experience and reflection, I have learned, never be complacent, always reviewing emotional, physical and spiritual states. And finally learning adaptability to any given level of pain. For me this means I can now live my life better without having to resort to pain medication or steroids as the first measure. This to me is an achievement of the highest level. I now find that if I do manual chores like mowing with a happy heart, so to speak, the work gets done in my own time. To me it is a sign that I am able to section off pain from me and just do. I have been a reader since I was 8 years old. I love the buying of a new book. Opening it and reading avidly all genres of books. My broad reading matter is reflected in references I make throughout this tome. However, I have had to adapt even here. I can no longer hold paper books for more than 30 minutes before my hands cramp. I tried a specifically designed cushion that holds books, but I could not adapt to this, habits of reading the same way every night for 60 years. I have entered the world of e-reading; thus, I can at least keep reading. Adapt or sink. It can take me a few days to do 5 hours work. ‘Such is life,’ as Ned Kelly said. Doing and achieving are good for a person’s spirit and well-being...

Pain caused by auto-immune diseases has come to dominate my life. For me, in particular, the diseases started adding up from 2011 to 2013. (I had a pre-quell of arthritis flares in the late 1990s, but these abated quickly, and I got on with my life.) Psoriatic arthritis, ankylosing spondylitis, secondary Raynaud’s syndrome and secondary diabetes all make an interesting concoction to test my, or anyone’s, mettle. There are many medical conditions that can be passed on genetically. It should be noted most adults over a certain age have some form of osteo-arthritis in one or more of their joints. Ankylosing spondylitis is just osteo-arthritis in the spine, which includes the neck. Over a lifetime there is great wear and tear on the bone joints for all people. My version, however, has seen 3 of my cervical vertebrae collapse. Therefore, the nerves coming through the channels to my arms are compressed. Pins and needles down my arms, into my hands, is a common occurrence for me. At the same time, as the genetic diseases started impacting on me I had a number of physical conditions that needed attention. Prostate issues, carpal tunnel in both hands and torn cartilage in both knees all needed an operation to stop their impact on my life. Eventually I had to have both knees reconstructed. I now set off alarms at airport security. Sometimes you just have to be stubborn.

Photographs show my great-grandmother Maria, my grand-mother Stamatia and my mother, Maria, had characteristic rheumatoid arthritis joints. A disease which is visible through signs like gnarled and twisted hands. People react differently to those with visible signs of illness. But diseases like psoriatic arthritis or endometriosis or … (fill in the dots, for there are many chronic illnesses, and they are varied) which are invisible, people cannot understand. If I am limping because of a flare in my hips or feet, people ask about it. I say the arthritis in my hips is bad, they then assume it is wear and tear, which is osteo-arthritis. I have gotten to the point where I do not want to go into a spiel about genetic arthritis. It is easier to let it ride and let the invisible diseases have their way and get on with what I can achieve.

Tell someone you have cancer, and the reaction is different again. Invisible but all of us have seen people fight this killer disease. So, emotions are touched, and people understand.

As a book it is not riveting. It is descriptive, as much as possible, of my journey from the beginnings of pain to greater understanding and subsequent skill development to deal with intense, eye-watering pain levels. Pain that can strike with debilitating effects, mentally and physically, without warning.

This tome begins at the present and then works backwards for a while.

As I begin to write this pre-quel, in 2021, I am off 2 of my arthritis medications to receive my 4th COVID vaccination. Each step I take is painful, adding weight to myself doing daily activities, like shopping or gardening, causes the pain to build. By the end of each day, I waddle and standing without bracing myself leads to me stumbling, and too often falling. I have to sit and wait it out. No good being impatient, just do within the body’s capabilities.

Hopefully the writing shows how lives are affected by the cycles of pain. It should be noted people, in general, do not understand the journey of pain that many people make daily. I certainly did not when my mother was in a rheumatoid arthritis flare. Now I do…

The cycles of pain are never-ending. Living in a bush setting for over 35 years, I have learnt through the normal cycles of nature as well as the extremes such as fire, flood and drought. I have observed different flora and fauna take advantage of the conditions; or await the opportunities to take best advantage of the said conditions. The bounties for some are not for others; how flora and fauna survive both the extremes as well as daily cycles are lessons to be learnt for those interested. Nature teaches never to be being complacent and always be adaptable to conditions of a said time. So, it is with chronic illnesses. If I am ever complacent and / or being inflexible I am not doing well. If I am complacent then illnesses dictate my life instead of me being in control of my life. I often say to myself, ‘an intellectually handicapped gnat has a better chance than me.’ Or if you prefer Jean-Paul Sartre saying, ‘An unconscious life is not worth living.’ Both my saying and the philosophical versions are the same thing. Many people have said the same thing in many ways. Words such as Zen, mindful awareness and so on all say the same thing; always be aware. For me having a motivator I can say to myself helps ensure I am in control, not the pain. I have other sayings which I use as motivators such as, ‘I think I can; I think I can’… ‘just this patch to mow I can do it’…

I will not write any more updates to these rambling from my mind.

So, to the end, and then the beginning…

What has pain got to do with Zen, hobbies and mindless junk? Or how to divert my brain from pain

2021 was a very difficult year for me. The difficulties were obviously pain related. Pain flared too often as it is an inherent part of my auto-immune diseases. However, on the positive, learning to live with pain I was able cross a threshold of understanding and techniques to deal with arthritis flares. Skill development forced on me by non-ending pain. My life is interspaced with tsunamis of eye-watering flares. These cycles of pain brought about a need to adapt to have a chance at a somewhat normal life.

It was a year that I went without some of my arthritis medication because of bureaucratic slowness and having 3 COVID vaccinations. The latter meant I had to go off my arthritis medications, as these suppress the immune system. The arthritis medications stop my immune system attacking itself. Going off these medications allows any vaccine to be more effective.

I have to go without during last week of April and first week of May 2022, to be vaccinated a fourth time. With auto-immune diseases a person is more prone to infections of any kind. It is interesting that 2 of my family got COVID and the 3rd had symptoms but did not fully develop in March 2022. I alone had no symptoms, this time. As I say, ‘the bugs took a look at my internal workings and said to themselves, ‘there is a mess in there, leave!!!’

There are formal places such as pain clinics or psychologists who have strategies to help a person come to terms with on-going pain. Pain programs that support living in a topsy-turvy world are a great way to deal with being thrown onto this roller coaster. Many people use the support of psychologists or pain clinics to come to terms with what they have been dealt.

Or there are people like me, who need to do it by themselves. My mother always said I was a loner.

At the beginning, when pain reared its ugly head, for me there were a lot of confusing times. Going from ‘normal’ to excruciating pain was a dramatic change. This change initially was thought to be shoulder issues caused by multiple dislocation when I was a teenager. I was looking at a shoulder re-construction. However, as more and more medical tests happened, I went from osteo-arthritis to genetic auto-immune diseases. First came ankylosing spondylosis which