MEpedia - User contributions [en]

User:Keith Jackson AM

2025-04-04T01:24:32Z

Keith Jackson AM:/* IN THE BEGINNING.... */

= ME and Me - those first two years.... =
<blockquote>I have never held back an article for so long, 23 years, although many readers will be familiar with at least some of what follows. For all that time I felt the subject matter was too close to the bone. Now I feel able to share it. I don't know if it will assist other people with ME/CFS. I hope so. And I'm happy to take questions through the Comments section or confidentially by email benelongATbigpond.net.au - KJ</blockquote>CREMORNE [Sept 2002] - It was in 1998 that I noticed things weren’t, shall we say, normal. Each afternoon at Jackson Wells Morris I’d fall asleep at my desk: forehead composing hundreds of pages of gobbledegook on the computer keyboard; loyal staff pinning notices on the back of my chair, ‘Managing Director – Do Not Disturb’; something unknown was keeping me very, very tired.

This was the year I slept practically all the way from Sydney to London beside a mewling baby and its drained mother - later boasting I could sleep through anything. And on the way home from New York, tapped on the shoulder by the business class purser and asked to ‘control’ my thunderous snoring.

I thought it was just the passing of the years – in 1998 I was 53. But there was more. Waking many times a night gasping and choking. An immune system so shot annual flu became monthly flu. Blood pressure through the roof seeming invulnerable to medication. A windpipe predisposed to be obstructed by food. And this in one of the world’s great lunchers.

During 1999, the condition worsened to the extent that my legendary energy had evaporated and what seemed to be chronic depression had set in. By now I was attributing the symptoms to stress and overwork. Late in the year, I went on a long working holiday to Europe and the States, figuring this was the therapy I needed to get well. I returned home exhausted – and ill.

Ingrid had been telling me I stopped breathing many times a night while I slept. She said information on the internet suggested I might have a condition called obstructive sleep apnoea. For some months, she worked on me to take her seriously. Like many men whose partners detect symptoms, I ignored her …. and eventually did something about it.

Early in the century’s first year, my general practitioner expressed scepticism at our amateur diagnosis but agreed I should be admitted to hospital to be checked out. I was. I had obstructive sleep apnoea (OSA). I was stopping breathing nearly 300 times a night.

The result - I was severely oxygen deprived. The brain was sending mayday calls to the body – ‘Wake him, wake him, otherwise we’re done for’. The body was permanently fatigued. It was under a lot of stress. It was in steep decline.

The new century had hardly begun when I was prescribed a shoe box-sized pump (1) called a CPAP (continuous positive airway pressure), some tubing, a mask that fitted more or less over my nose and a strap to keep my mouth shut. Friends endorsed the latter concept.

The pump generated a continuous stream of air to keep my airway open at night. The pressure was (and remains) significant - 17cm H2O, strong enough to blow up an air mattress. Quickly.

I was surprised that my lungs were strong enough to breathe out against the machine’s airflow. I use this pump every time I sleep. Otherwise I stop breathing.

Untreated OSA kills by stealth – stroke, heart attack, diabetes, organ failure. But first it deprives you of lots of brain cells through oxygen starvation. And it deprives you of your immune system as a result of constant fatigue. But mostly it deprives you of your enjoyment of being alive.

I use CPAP every night and, while there are major personal adjustment issues to machine-assisted sleep at high pressure, my health was beginning to improve. The vital things doctors care about – blood pressure, blood glucose, triglycerides, weight, those things – all under control.

A couple of months later I went into another tailspin. So exhausted by midday, I had to go home and rest for the afternoon,

I was soon back to the OSA specialist, who intimated I was depressed and prescribed anti-depressants. One night on these and I walked out on my specialist.

I found Dr Ron Grunstein,(2) an associate professor at Sydney Uni specialising in OSA, and got my GP to write a referral. It was early 2001. Back into hospital for tests. The conclusion: "You don’t have a sleep problem, it’s not sleep related." He referred me to the professor of pathology at the Uni of NSW – Prof Denis Wakefield. I was reassured because now I was getting the top guys.

By the time I got to see Wakefield,(3) went for more tests and got a diagnosis, it was October 2001. Pretty quick for the health system, I suppose, but a long time if you're exhausted. The prof told me I had Chronic Fatigue Syndrome (CFS) (4) – which Ingrid and I had already worked out – and Fybromyalgia Syndrome (FMS).

By now I was in a really bad way physically and emotionally. I was experiencing massive fatigue, pain, depression and my basic tool of trade – my brain – was depriving me of the cognition and reasoning ability I required both for my job and for the MBA I was studying by correspondence from the Uni of New England.(5)

Prof Denis said there was nothing organically wrong, but my brain was not functionally processing information about the body and it could take years to come good. He prescribed a drug, Moclobemide,(6) to help the brain, an exercise regime to mobilise the body (walk as far as I can without overtiring myself), and patience.

I knew I had to make some tough choices. One was to give up work. Fortunately, in the previous two years, as I realised I was going downhill, I had tightened up the operations of my issues management firm (23 staff, $3.5m revenue).

I sloughed off more responsibility to the other senior director, reduced staff numbers and brought in another experienced director to bear more of the weight. Giving up work was the toughest decision. I felt miserable and guilty and let down by myself. But I had no choice. My body had me backed into a corner.

The second decision I made was to give up study. I’d completed seven subjects of a 12-unit MBA in 18 months. I’d scored five high distinctions, two distinctions and been dux of the year in business ethics. I felt sick as I wrote the letter seeking permission to withdraw. But I had no choice. My body could not press on.

The third decision was to do exactly whatever the good prof told me to do. Which I have. Everything. The conscientiously compliant patient. Most unusual for this man.

Until about March this year (2002), the charts showed me getting worse, but at a slowing rate of decline. I felt better about things, having restructured my life to accommodate the condition. Then followed a long period of gradual improvement. This lasted nearly six months and I decided to go back to work half-time and resume my studies.

This I did in early August 2002. Then I experienced a major infection – the third in as many months. My health rapidly declined. I stopped work again and went back to the prof.

Denis Wakefield told me infections can trigger relapses in CFS. I asked how to stop infections. He said that’s hard, your immune system is compromised. More tests. Then my MBA materials arrived from Armidale. The irony was worse than evil.

Once again, I’m appallingly slow in the morning. Often irritable. There’s usually a bit of pain. My balance is unsteady and I shuffle around. My mind is befogged: I have to talk to myself to work through simple tasks.

By mid-morning, no matter how I feel, I take to the streets and the bush paths for a slow hour or so. I get a good measure of my fatigue state by the pain in my feet and legs. In early afternoon, generally, I’m fading and by eight or nine most nights, sometimes earlier, I’m totally buggered.

But I have some terrific days when I’m energised and life is almost normal. These are the days that give me hope there’s another robust Keith within the rather decrepit one – and, given an ounce of luck, this’ll be the one that wins through.

After the walk, I turn to work. This I do at my maximum level of competence. Sometimes I’m incompetent. I decided to resume the MBA program, although there have been times since that I pondered the wisdom of this.

I work when I can, slowly and with frequent breaks. My concentration isn’t brilliant. But my brain’s still OK. It’s just the processing that’s sometimes difficult.

But, because I never know where I’ll be on the scale, I’m no good as a regular consultant or manager. I’ve busted more appointments – professional and social – in the last year than I have in all my life previously. I can’t tell you how bad this is for morale. CFS is an erratic and unpredictable condition. Push against it and it makes you pay – for days or longer.

Still, I wouldn’t want you to think I’m complaining. I’m not. I accept my present state. My business partner is running the firm capably.(7) Ingrid and our son Ben, 15, understand my condition and are more supportive than I deserve.

Overall, in my restructured life, I’m functioning as well as I can. And, while I regret there are things I cannot do, I don’t fret about them. I try to maximise where I can.

Working on a reunion (8) was good for me. I did it when I could. There were no oppressive deadlines. I was able to lose myself in nostalgia. (The past is fine so long as you don't live there.) This was a social and even useful process. We helped re-establish old friendships. Friendships that people thought had gone forever. I’m a romantic and a sentimentalist at heart.

So that brings me to now. It’s September 2002, nearly a year since diagnosis. In that period, I’ve experienced a gradual decline, a remission and a relapse. Which is where I am still. Working and waiting for another turnaround. Gingerly managing my life to make sure things don’t get worse.

One day soon, we shall sit down and do what we need to do. Talk and plan and laugh. But it doesn’t look like it’s today. Not yet.

'''EXPLANATORY FOOTNOTES'''

''<small>Added by Keith Jackson in April 2025</small>''

# An Australian invention of Sydney University's Prof Colin Sullivan in the 1980s, CPAP remains the simple (now overpriced but prettier) pump it always was. My current version is probably sixth generation and is still on the same pressure of 17cmH²O. My condition has never much changed but I have never missed one night of sleep and, as you can tell, I'm still alive. Link here for more about the great Prof Sullivan
# Professor Ron Grunstein AM is a staff specialist physician at Sydney’s Royal Prince Alfred Hospital, has an honorary appointment in respi ratory and sleep medicine at St Vincent’s Hospital, Sydney and heads the Sleep and Circadian Research Group in the Woolcock Institute of Medical Research
# Professor Denis Wakefield AO DSc MDBS FRACP FRCPA was Head of the School of Pathology for 10 years at UNSW before becoming foundation professor of the School of Medical Sciences
# CFS, since rebadged as ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), is a complex, multisystem illness characterised by profound fatigue that worsens with physical or mental activity and does not improve with rest. The condition is accompanied by various symptoms including cognitive dysfunction, orthostatic intolerance, and post-exertional malaise (PEM). The illness has no defined cause, no cure and no recognised treatment. Its symptoms and their severity vary, including bouts of an undefined illness that sweeps through the body causing great distress and is commonly referred to as a 'crash', the effects of which can last from hours to days
# I pressed on with the MBA for one further unit and then had to withdraw. Two years later a package arrived in the post box recognising that I’d completed eight units, four short of an MBA but enough to be awarded a post-graduate diploma
# Despite apparently promising results broadcast widely on the internet, the efficacy of Moclobemide for treating ME/CFS was not established through clinical trials. An early small open-label study by Hickie et al. in the 1990s suggested some potential benefit but follow-up controlled trials did not confirm these early results. The scientific consensus is that, while moclobemide may help with comorbid depression in some ME/CFS patients, it doesn't appear to address the primary symptoms of ME/CFS
# My faith in the company’s future was misplaced. It languished and, in 2012 when the then CEO took important clients with him to his own consultancy, I returned to work to liquidate the ailing firm, keeping its doors open until all staff members had found employment. In its 20 years of operation Jackson Wells Morris had consulted to more than 500 clients and between 1995 and 2005 had been an industry pace setter
# The 2002 reunion referred to was that of the ASOPA Cadet Education Officers Class of 1962-63

User:Keith Jackson AM

2025-03-22T04:52:02Z

Keith Jackson AM:

= IN THE BEGINNING.... =
'''It was in 1998 that I noticed things weren’t, shall we say, normal. Each afternoon I fell asleep at my desk, my forehead composing hundreds of pages of gobbledegook on the computer keyboard; my loyal staff pinning notices on the back of my chair, ‘Managing Director – Do Not Disturb’. That was the year I slept practically all the way from Sydney to London beside a mewling baby and its drained mother; later boasting I could sleep through anything.'''

I thought it was the passing of the years – in 1998 I was 53. But there was more. Waking up gasping and choking many times a night. An immune system so shot the annual flu became the monthly flu. Blood pressure through the roof and invulnerable to medication. A windpipe predisposed to be obstructed by food. And this in one of the world’s great lunchers.

During 1999, the condition worsened to the extent that my legendary energy had evaporated and what seemed to be chronic depression had set in. By now I was attributing the symptoms to stress and overwork. In late ’99 I went on a long holiday to Europe and the States, figuring this was the therapy I needed to get well. After five weeks, I returned home, exhausted.

Ingrid had been telling me I stopped breathing many times a night while I slept. She said information on the Internet suggested I could have a condition called obstructive sleep apnoea. For some months, she worked on me to take her seriously. I thought she’d found a new way to get me to cut down on my drinking. So, like many men whose partners detect symptoms, I ignored her and sometimes argued with her and eventually did something about it.

My general practitioner was sceptical of our amateur diagnosis but agreed I should be admitted to hospital to be checked out. I was. I had obstructive sleep apnoea (OSA). I was stopping breathing nearly 300 times a night. I was oxygen deprived. The brain was sending mayday calls to the body – ‘Wake him, wake him, otherwise we’re done for’. The body was permanently fatigued. It was under a lot of stress. It was in steep decline.

I was prescribed a shoe box-sized pump called a CPAP (for continuous positive airway pressure), some tubing, a mask that fitted more or less snugly over the nose and a strap to keep my mouth shut. My friends liked the latter concept a great deal. The pump generated a continuous stream of air to keep my airway open at night. The pressure was (and remains) significant - 17cm H2O, strong enough to blow up an air mattress. I am surprised that my lungs are strong enough to breathe out against it. I use this pump every time I sleep. Otherwise I stop breathing.

Untreated OSA kills by stealth – stroke, heart attack, diabetes, organ failure. But first it deprives you of lots of brain cells through oxygen starvation. And it deprives you of your immune system as a result of constant fatigue. But mostly it deprives you of your enjoyment of being alive.

By early 2000 I am still using CPAP every night (''March 2025 - I have not missed one night in all these years'') and, while there were major adjustment issues to machine-assisted sleep, my health was beginning to improve. The vital things that doctors care about – blood pressure, triglycerides, weight, those things – were all under control.

Then I went into another tailspin. So exhausted by midday, I had to go home and rest for the afternoon. Back to the OSA specialist who intimated I was going mad and prescribed anti-depressants. One night on these and I fired my specialist. I found an associate professor at Sydney Uni specialising in OSA and got my GP to write a referral. It was early 2001. Back into hospital for tests. His conclusion: "You don’t have a sleep problem, it’s not sleep related." He referred me to the professor of pathology at the Uni of NSW – Prof Denis Wakefield. I was reassured because now I was getting the top guys.

By the time I got to see Wakefield, went for more tests and got a diagnosis, it was October 2001. Pretty quick for the health system but a long time if you're exhausted. The prof told me I had Chronic Fatigue Syndrome (CFS) – which Ingrid and I had already worked out - and Fybromyalgia Syndrome (FMS). By now I was in a really bad way physically and emotionally. I was experiencing massive fatigue, pain, depression and my basic tool of trade – my brain – was depriving me of the cognition and reasoning ability I required both for my job and for the MBA I was studying by correspondence from the Uni of New England.

The Prof Denis said there was nothing organically wrong, but my brain was dysfunctionally processing information about the body and it could take years to come good. He prescribed a drug (Maclobomide) to help the brain, an exercise regime to mobilise the body (walk as far as I can without overtiring myself), and patience.

I knew I had to make some tough choices. One was to give up work. Fortunately, in the previous two years, as I realised I was going downhill, I had tightened up the operations of my issues management firm (23 staff, $4M revenue). I sloughed off more responsibility on to the other senior partner, retired (yeah, a euphemism) non-performing staff and brought in another experienced partner to bear more of the weight. Giving up work was the toughest decision. I felt miserable and guilty and let down by myself. But I had no choice. My body had me backed into a corner.

The second decision I made was to give up study. I’d completed seven subjects of a 12-unit MBA in 18 months. I’d scored five high distinctions, two distinctions and been dux of the year in business ethics. I felt sick as I wrote the letter seeking permission to withdraw. But I had no choice. My body could not press on.

The third decision was to do exactly whatever the good prof told me to do. Which I have. Everything. The conscientiously compliant patient. Most unusual for this man.

Until about March this year (2002), the charts showed me getting worse, but at a slowing rate of decline. I felt better about things, having restructured my life to accommodate the condition. Then followed a long period of gradual improvement. This lasted nearly six months and I decided to go back to work half-time and resume my studies.

This I did in early August 2002. Then I experienced a major infection – the third in as many months. My health rapidly declined. I stopped work again and went back to the prof. Denis Wakefield told me infections can trigger relapses in CFS. I asked how to stop infections. He said that’s hard, your immune system is compromised. More tests. Then my MBA materials arrived.

I’m appallingly slow in the morning. And often very irritable. There’s usually a fair bit of pain. My balance is unsteady and I shuffle around. My mind is befogged: I have to talk to myself to work through simple tasks. By about 10, no matter how I feel, I take to the streets and the bush paths for an hour or so. I get a good measure of my fatigue state by the pain in my feet and legs. In the afternoon, generally, I’m beginning to fade and by nine most nights, sometimes earlier, I’m totally buggered. But I have some terrific days when I’m energised and life is almost normal. These are the days that give me hope there’s another robust Keith within the rather decrepit one – and, given an ounce of luck, this’ll be the one that wins through.

After the walk, I turn to work. This I do at my maximum level of competence. Sometimes I’m incompetent. I decided to resume the MBA program, although there have been times since that I pondered the wisdom of this. I work when I can. Mostly I work slowly with frequent breaks. My concentration isn’t brilliant. But my brain’s still OK. It’s just the processing that’s sometimes difficult.

But, because I never know where I’ll be on the scale, I’m no good as a regular consultant or manager. I’ve busted more appointments – professional and social – in the last year than I have in all my life previously. I can’t tell you how bad this is for morale. I’m a player and a stayer, not a nudger and a bludger. But CFS is an erratic and unpredictable condition. Push against it and it makes you pay – for days or longer.

Still, I wouldn’t want you to think I’m complaining. I’m not. I accept my present state. My business partner is running the firm capably [''or so I thought a the time'']. Ingrid and our son Ben (15) understand my condition and are more supportive than I deserve. Overall, in my restructured life, I’m functioning as well as I can. And, while I regret there are things I cannot do, I don’t fret about them. I try to maximise where I can.

Working on a reunion ''[ASOPA cadet education officers 1963]'' was good for me. I did it when I could. There were no oppressive deadlines. I was able to lose myself in nostalgia. (The past is fine so long as you don't live there.) This was a social and even useful process. We helped re-establish old friendships. Friendships that people thought had gone forever. I’m a romantic and a sentimentalist at heart.

So that brings me to now. It’s September 2002, nearly a year since diagnosis. In that period, I’ve experienced a gradual decline, a remission and a relapse. Which is where I am still. Working and waiting for another turnaround. Gingerly managing my life to make sure things don’t get worse.

One day soon, old mate, we shall sit down and do what we need to do. Talk and plan and laugh.

But it doesn’t look like it’s today. Not yet.

[It is March 2025. In the intervening years I had a 5-year remission. Now I'm back at 'Severe'. I'll continue this story sometime soon - KJ]

User:Keith Jackson AM

2025-03-22T04:12:24Z

Keith Jackson AM:Keith begins his journey in ME/CFS

IN THE BEGINNING

It was in 1998 that I noticed things weren’t, shall we say, normal. Each afternoon I fell asleep at my desk, my forehead composing hundreds of pages of gobbledegook on the computer keyboard; my loyal staff pinning notices on the back of my chair, ‘Managing Director – Do Not Disturb’. That was the year I slept practically all the way from Sydney to London beside a mewling baby and its drained mother; later boasting I could sleep through anything.

I thought it was the passing of the years – in 1998 I was 53. But there was more. Waking up gasping and choking many times a night. An immune system so shot the annual flu became the monthly flu. Blood pressure through the roof and invulnerable to medication. A windpipe predisposed to be obstructed by food. And this in one of the world’s great lunchers.

During 1999, the condition worsened to the extent that my legendary energy had evaporated and what seemed to be chronic depression had set in. By now I was attributing the symptoms to stress and overwork. In late ’99 I went on a long holiday to Europe and the States, figuring this was the therapy I needed to get well. After five weeks, I returned home, exhausted.

Ingrid had been telling me I stopped breathing many times a night while I slept. She said information on the Internet suggested I could have a condition called obstructive sleep apnoea. For some months, she worked on me to take her seriously. I thought she’d found a new way to get me to cut down on my drinking. So, like many men whose partners detect symptoms, I ignored her and sometimes argued with her and eventually did something about it.

My general practitioner was sceptical of our amateur diagnosis but agreed I should be admitted to hospital to be checked out. I was. I had obstructive sleep apnoea (OSA). I was stopping breathing nearly 300 times a night. I was oxygen deprived. The brain was sending mayday calls to the body – ‘Wake him, wake him, otherwise we’re done for’. The body was permanently fatigued. It was under a lot of stress. It was in steep decline.

I was prescribed a shoe box-sized pump called a CPAP (for continuous positive airway pressure), some tubing, a mask that fitted more or less snugly over the nose and a strap to keep my mouth shut. My friends liked the latter concept a great deal. The pump generated a continuous stream of air to keep my airway open at night. The pressure was (and remains) significant - 17cm H2O, strong enough to blow up an air mattress. I am surprised that my lungs are strong enough to breathe out against it. I use this pump every time I sleep. Otherwise I stop breathing.

Untreated OSA kills by stealth – stroke, heart attack, diabetes, organ failure. But first it deprives you of lots of brain cells through oxygen starvation. And it deprives you of your immune system as a result of constant fatigue. But mostly it deprives you of your enjoyment of being alive.

By early 2000 I am still using CPAP every night (''March 2025 - I have not missed one night in all these years'') and, while there were major adjustment issues to machine-assisted sleep, my health was beginning to improve. The vital things that doctors care about – blood pressure, triglycerides, weight, those things – were all under control.

Then I went into another tailspin. So exhausted by midday, I had to go home and rest for the afternoon. Back to the OSA specialist who intimated I was going mad and prescribed anti-depressants. One night on these and I fired my specialist. I found an associate professor at Sydney Uni specialising in OSA and got my GP to write a referral. It was early 2001. Back into hospital for tests. His conclusion: "You don’t have a sleep problem, it’s not sleep related." He referred me to the professor of pathology at the Uni of NSW – Prof Denis Wakefield. I was reassured because now I was getting the top guys.

By the time I got to see Wakefield, went for more tests and got a diagnosis, it was October 2001. Pretty quick for the health system but a long time if you're exhausted. The prof told me I had Chronic Fatigue Syndrome (CFS) – which Ingrid and I had already worked out - and Fybromyalgia Syndrome (FMS). By now I was in a really bad way physically and emotionally. I was experiencing massive fatigue, pain, depression and my basic tool of trade – my brain – was depriving me of the cognition and reasoning ability I required both for my job and for the MBA I was studying by correspondence from the Uni of New England.

The Prof Denis said there was nothing organically wrong, but my brain was dysfunctionally processing information about the body and it could take years to come good. He prescribed a drug (Maclobomide) to help the brain, an exercise regime to mobilise the body (walk as far as I can without overtiring myself), and patience.

I knew I had to make some tough choices. One was to give up work. Fortunately, in the previous two years, as I realised I was going downhill, I had tightened up the operations of my issues management firm (23 staff, $4M revenue). I sloughed off more responsibility on to the other senior partner, retired (yeah, a euphemism) non-performing staff and brought in another experienced partner to bear more of the weight. Giving up work was the toughest decision. I felt miserable and guilty and let down by myself. But I had no choice. My body had me backed into a corner.

The second decision I made was to give up study. I’d completed seven subjects of a 12-unit MBA in 18 months. I’d scored five high distinctions, two distinctions and been dux of the year in business ethics. I felt sick as I wrote the letter seeking permission to withdraw. But I had no choice. My body could not press on.

The third decision was to do exactly whatever the good prof told me to do. Which I have. Everything. The conscientiously compliant patient. Most unusual for this man.

Until about March this year (2002), the charts showed me getting worse, but at a slowing rate of decline. I felt better about things, having restructured my life to accommodate the condition. Then followed a long period of gradual improvement. This lasted nearly six months and I decided to go back to work half-time and resume my studies.

This I did in early August 2002. Then I experienced a major infection – the third in as many months. My health rapidly declined. I stopped work again and went back to the prof. Denis Wakefield told me infections can trigger relapses in CFS. I asked how to stop infections. He said that’s hard, your immune system is compromised. More tests. Then my MBA materials arrived.

I’m appallingly slow in the morning. And often very irritable. There’s usually a fair bit of pain. My balance is unsteady and I shuffle around. My mind is befogged: I have to talk to myself to work through simple tasks. By about 10, no matter how I feel, I take to the streets and the bush paths for an hour or so. I get a good measure of my fatigue state by the pain in my feet and legs. In the afternoon, generally, I’m beginning to fade and by nine most nights, sometimes earlier, I’m totally buggered. But I have some terrific days when I’m energised and life is almost normal. These are the days that give me hope there’s another robust Keith within the rather decrepit one – and, given an ounce of luck, this’ll be the one that wins through.

After the walk, I turn to work. This I do at my maximum level of competence. Sometimes I’m incompetent. I decided to resume the MBA program, although there have been times since that I pondered the wisdom of this. I work when I can. Mostly I work slowly with frequent breaks. My concentration isn’t brilliant. But my brain’s still OK. It’s just the processing that’s sometimes difficult.

But, because I never know where I’ll be on the scale, I’m no good as a regular consultant or manager. I’ve busted more appointments – professional and social – in the last year than I have in all my life previously. I can’t tell you how bad this is for morale. I’m a player and a stayer, not a nudger and a bludger. But CFS is an erratic and unpredictable condition. Push against it and it makes you pay – for days or longer.

Still, I wouldn’t want you to think I’m complaining. I’m not. I accept my present state. My business partner is running the firm capably [''or so I thought a the time'']. Ingrid and our son Ben (15) understand my condition and are more supportive than I deserve. Overall, in my restructured life, I’m functioning as well as I can. And, while I regret there are things I cannot do, I don’t fret about them. I try to maximise where I can.

Working on a reunion ''[ASOPA cadet education officers 1963]'' was good for me. I did it when I could. There were no oppressive deadlines. I was able to lose myself in nostalgia. (The past is fine so long as you don't live there.) This was a social and even useful process. We helped re-establish old friendships. Friendships that people thought had gone forever. I’m a romantic and a sentimentalist at heart.

So that brings me to now. It’s September 2002, nearly a year since diagnosis. In that period, I’ve experienced a gradual decline, a remission and a relapse. Which is where I am still. Working and waiting for another turnaround. Gingerly managing my life to make sure things don’t get worse.

One day soon, old mate, we shall sit down and do what we need to do. Talk and plan and laugh.

But it doesn’t look like it’s today. Not yet.

[It is March 2025. In the intervening years I had a 5-year remission. Now I'm back at 'Severe'. I'll continue this story sometime soon - KJ]

User:Keith Jackson AM

2025-03-22T03:50:58Z

Keith Jackson AM:Originated

IN THE BEGINNING

It was in 1998 that I noticed things weren’t, shall we say, normal. Each afternoon I fell asleep at my desk, my forehead composing hundreds of pages of gobbledegook on the computer keyboard; my loyal staff pinning notices on the back of my chair, ‘Managing Director – Do Not Disturb’. That was the year I slept practically all the way from Sydney to London beside a mewling baby and its drained mother; later boasting I could sleep through anything.

I thought it was the passing of the years – in 1998 I was 53. But there was more. Waking up gasping and choking many times a night. An immune system so shot the annual flu became the monthly flu. Blood pressure through the roof and invulnerable to medication. A windpipe predisposed to be obstructed by food. And this in one of the world’s great lunchers.

During 1999, the condition worsened to the extent that my legendary energy had evaporated and what seemed to be chronic depression had set in. By now I was attributing the symptoms to stress and overwork. In late ’99 I went on a long holiday to Europe and the States, figuring this was the therapy I needed to get well. After five weeks, I returned home, exhausted.

Ingrid had been telling me I stopped breathing many times a night while I slept. She said information on the Internet suggested I could have a condition called obstructive sleep apnoea. For some months, she worked on me to take her seriously. I thought she’d found a new way to get me to cut down on my drinking. So, like many men whose partners detect symptoms, I ignored her and sometimes argued with her and eventually did something about it.

My general practitioner was sceptical of our amateur diagnosis but agreed I should be admitted to hospital to be checked out. I was. I had obstructive sleep apnoea (OSA). I was stopping breathing nearly 300 times a night. I was oxygen deprived. The brain was sending mayday calls to the body – ‘Wake him, wake him, otherwise we’re done for’. The body was permanently fatigued. It was under a lot of stress. It was in steep decline.

I was prescribed a shoe box-sized pump called a CPAP (for continuous positive airway pressure), some tubing, a mask that fitted more or less snugly over the nose and a strap to keep my mouth shut. My friends liked the latter concept a great deal. The pump generated a continuous stream of air to keep my airway open at night. The pressure was (and remains) significant - 17cm H2O, strong enough to blow up an air mattress. I am surprised that my lungs are strong enough to breathe out against it. I use this pump every time I sleep. Otherwise I stop breathing.

Untreated OSA kills by stealth – stroke, heart attack, diabetes, organ failure. But first it deprives you of lots of brain cells through oxygen starvation. And it deprives you of your immune system as a result of constant fatigue. But mostly it deprives you of your enjoyment of being alive.

By early 2000 I am still using CPAP every night (''March 2025 - I have not missed one night in all these years'') and, while there were major adjustment issues to machine-assisted sleep, my health was beginning to improve. The vital things that doctors care about – blood pressure, triglycerides, weight, those things – were all under control.

Then I went into another tailspin. So exhausted by midday, I had to go home and rest for the afternoon. Back to the OSA specialist who intimated I was going mad and prescribed anti-depressants. One night on these and I fired my specialist. I found an associate professor at Sydney Uni specialising in OSA and got my GP to write a referral. It was early 2001. Back into hospital for tests. His conclusion: "You don’t have a sleep problem, it’s not sleep related." He referred me to the professor of pathology at the Uni of NSW – Prof Denis Wakefield. I was reassured because now I was getting the top guys.

By the time I got to see Wakefield, went for more tests and got a diagnosis, it was October 2001. Pretty quick for the health system but a long time if you're exhausted. The prof told me I had Chronic Fatigue Syndrome (CFS) – which Ingrid and I had already worked out - and Fybromyalgia Syndrome (FMS). By now I was in a really bad way physically and emotionally. I was experiencing massive fatigue, pain, depression and my basic tool of trade – my brain – was depriving me of the cognition and reasoning ability I required both for my job and for the MBA I was studying by correspondence from the Uni of New England.

The Prof Denis said there was nothing organically wrong, but my brain was dysfunctionally processing information about the body and it could take years to come good. He prescribed a drug (Maclobemide) to help the brain, an exercise regime to mobilise the body (walk as far as I can without overtiring myself), and patience.

I knew I had to make some tough choices. One was to give up work. Fortunately, in the previous two years, as I realised I was going downhill, I had tightened up the operations of my issues management firm (23 staff, $4M revenue). I sloughed off more responsibility on to the other senior partner, retired (yeah, a euphemism) non-performing staff and brought in another experienced partner to bear more of the weight. Giving up work was the toughest decision. I felt miserable and guilty and let down by myself. But I had no choice. My body had me backed into a corner.

The second decision I made was to give up study. I’d completed seven subjects of a 12-unit MBA in 18 months. I’d scored five high distinctions, two distinctions and been dux of the year in business ethics. I felt sick as I wrote the letter seeking permission to withdraw. But I had no choice. My body could not press on.

The third decision was to do exactly whatever the good prof told me to do. Which I have. Everything. The conscientiously compliant patient. Most unusual for this man.

Until about March this year (2002), the charts showed me getting worse, but at a slowing rate of decline. I felt better about things, having restructured my life to accommodate the condition. Then followed a long period of gradual improvement. This lasted nearly six months and I decided to go back to work half-time and resume my studies.

This I did in early August 2002. Then I experienced a major infection – the third in as many months. My health rapidly declined. I stopped work again and went back to the prof. Denis Wakefield told me infections can trigger relapses in CFS. I asked how to stop infections. He said that’s hard, your immune system is compromised. More tests. Then my MBA materials arrived.

I’m appallingly slow in the morning. And often very irritable. There’s usually a fair bit of pain. My balance is unsteady and I shuffle around. My mind is befogged: I have to talk to myself to work through simple tasks. By about 10, no matter how I feel, I take to the streets and the bush paths for an hour or so. I get a good measure of my fatigue state by the pain in my feet and legs. In the afternoon, generally, I’m beginning to fade and by nine most nights, sometimes earlier, I’m totally buggered. But I have some terrific days when I’m energised and life is almost normal. These are the days that give me hope there’s another robust Keith within the rather decrepit one – and, given an ounce of luck, this’ll be the one that wins through.

After the walk, I turn to work. This I do at my maximum level of competence. Sometimes I’m incompetent. I decided to resume the MBA program, although there have been times since that I pondered the wisdom of this. I work when I can. Mostly I work slowly with frequent breaks. My concentration isn’t brilliant. But my brain’s still OK. It’s just the processing that’s sometimes difficult.

But, because I never know where I’ll be on the scale, I’m no good as a regular consultant or manager. I’ve busted more appointments – professional and social – in the last year than I have in all my life previously. I can’t tell you how bad this is for morale. I’m a player and a stayer, not a nudger and a bludger. But CFS is an erratic and unpredictable condition. Push against it and it makes you pay – for days or longer.

Still, I wouldn’t want you to think I’m complaining. I’m not. I accept my present state. My business partner is running the firm capably [''or so I thought a the time'']. Ingrid and our son Ben (15) understand my condition and are more supportive than I deserve. Overall, in my restructured life, I’m functioning as well as I can. And, while I regret there are things I cannot do, I don’t fret about them. I try to maximise where I can.

Working on a reunion ''[ASOPA cadet education officers 1963]'' was good for me. I did it when I could. There were no oppressive deadlines. I was able to lose myself in nostalgia. (The past is fine so long as you don't live there.) This was a social and even useful process. We helped re-establish old friendships. Friendships that people thought had gone forever. I’m a romantic and a sentimentalist at heart.

So that brings me to now. It’s September 2002, nearly a year since diagnosis. In that period, I’ve experienced a gradual decline, a remission and a relapse. Which is where I am still. Working and waiting for another turnaround. Gingerly managing my life to make sure things don’t get worse.

One day soon, old mate, we shall sit down and do what we need to do. Talk and plan and laugh.

But it doesn’t look like it’s today. Not yet.

[It is March 2025. In the intervening years I had a 5-year remission. Now I'm back at 'Severe'. I'll continue this story sometime soon - KJ]