As Covid-19 Overwhelms Health Systems, What of Non-Covid patients?

While the Omicron variant may be less severe than Delta, the sheer numbers are seeing hospitals and related health services overwhelmed. Health care staff themselves are in isolation/quarantine.

The wait time for a hip or knee replacement in the UK has blown out dramatically. The situation was bad before the pandemic – now it is worsening.

Patients are facing five-year waits for hip replacements as backlogs reach crisis point, according to an orthopaedic surgeon who quit the NHS.

Almost 6 million people are on waiting lists for hospital treatment in England.

I booked a mammogram here in Melbourne in early August – the appointment was in November. In some jurisdictions in Australia, mammograms were not being done at all during parts of 2021, due to Covid-19. How many cases were not detected early enough and this has impacted the outcome for the patient? Will we ever know? While Covid-19 has no direct effect on the performance of mammograms, the changes required to minimise spread of the disease do.

The term “elective surgery” SOUNDS, well, elective – as in not really necessary. Having been through a total knee replacement and watched my boss wait for his hip replacement (he was only fifty, by the way) I can assure you there is nothing “not necessary” about joint replacement surgery. The pain and loss of quality of life can be horrific. The difference is an excruciating knee won’t kill me, so it is considered non-urgent.

“Our health system is at a very different place than we were in previous surges,” emergency medicine professor Dr. Esther Choo said. “This strain is so infectious that I think all of us know many, many colleagues who are currently infected or have symptoms and are under quarantine,” said Choo, associate professor at Oregon Health and Science University. “We’ve lost at least 20% of our health care workforce — probably more.”

The above is the USA. Here in Australia we have changed our isolation guidelines for health workers due to the shortage of staff.

Doctors say a decision to exempt health workers in New South Wales from self-isolating if they are close contacts reflects an “extremely desperate situation”, with warnings the policy change will increase the Covid risk to hospital patients.

NSW Health announced late on Friday night that in “exceptional circumstances”, frontline workers who are asymptomatic close contacts will be exempt from having to self-isolate for seven days, to avoid disruption to key services.

We have even suggested flying in nurses. Where from, I’ve got no idea as many countries are just as short of health care workers as we are. This is, after all, a GLOBAL pandemic: a point some of our politicians seem to conveniently overlook.

Critically understaffed public hospitals in New South Wales are planning to fly in nurses from overseas, a leaked memo reveals, as managers beg staff to cancel leave and take on extra shifts amid surging Covid cases.

Early in the pandemic, when the scientific and medical communities were still learning much about how to handle this new challenge, I had my own health case disrupted and affected by Covid-19. In early 2020 I was booked for a total knee replacement. That was cancelled due to an early lockdown. Thankfully, I was rescheduled for late May. While I waited I lived on non-steroidal anti-inflammatory drugs (NSAIDs) and Tramadol. Despite ramping up my Pantoprazole under medical advice, the sustained use of NSAIDs still saw me in hospital some time later for gut issues.

When I did end up in the emergency department some months later with excruciating left upper quadrant abdominal pain, due to Covid-19 restrictions gastroscopies were not allowed unless there was evidence of internal bleeding. I joke I was diagnosed the old-fashioned way!

Sara shares she is currently waiting, in extreme pain, for some of that elective surgery.

Non-Covid patients in many hospitals can’t have visitors, with some exemptions permitted.

From a Melbourne hospital web site

Being unable to have visitors can be traumatic for patients, especially if they are in hospital for a considerable length of time. This can affect their recovery.

We talk mostly about the Covid-19 patients themselves: do we have enough ICU beds, enough nursing staff, enough tests and medications to cope with the explosion in numbers. Yet the impacts on non-Covid cases are not being widely reported in the mainstream media at all. This links in with my earlier article where I discussed health systems are FINITE.

We, the people, yes us, we cry out for more doctors, more nurses. Where, exactly, are these health care workers supposed to miraculously appear from? It is not possible. There are limited trained health care workers in the world – not just here, in the world. Not enough to care for WAY too many sick people. We have to accept that as a fact.

The Covid-19 patients take priority everywhere as their need is certainly super urgent, but that means non-Covid cases have to be sidelined and a backlog develops (or existing backlogs worsen).

There are long term costs. The cases worsen, are therefore more expensive to “fix”. In some cases, unfortunately, death may ultimately result from delayed treatment.

On New Year’s Day I was in a lot of pain. Just about every enthesis in my body (except hips and TMJ) decided to go haywire. I thought about taking myself to the emergency department, but the concern of exposing myself to a hospital environment made me stay home. Now, my entheses aren’t going to kill me: but what of other cases, such as a suspected stroke or heart attack, where the patient stays home for similar reasons (avoiding possible Covid-19 exposure)?

Here is a thread on Twitter about a man who collapsed in a carpark, Type 1 diabetes. The closest ambulance was at least one hour away. While the ambulance delay may not have been directly attributable to Covid-19 use of resources, it is indicative that the extra load on the system places non-Covid patients at risk.

I don’t have a solution. After all (again), health systems are finite. I do expect to see better media coverage of the risks to all of us. What, if anything, is being done to manage the global crisis facing non-Covid patients?

Pandemic Practicalities

The Covid-19 Pandemic is horrible, frightening, life-threatening. Ignoring the very real practicalities does not solve the problems we face.

Health Systems Are Finite

Early in the pandemic we witnessed China build a hospital in ten days. I’m not aware of any Western nation that has even attempted similar. Even so, a hospital is bricks and mortar. No hospital runs without staff. While we can perhaps employ a secondment strategy to provide cleaning, food preparation and laundry staff, we cannot manufacture doctors, nurses, lab technicians, radiologists, pathologists and other health care staff overnight. Or, for that matter in ten days. It takes a good ten years to train a doctor and even then that doctor is not a specialist in pandemic related disciplines.

We, the people, yes us, we cry out for more doctors, more nurses. Where, exactly, are these health care workers supposed to miraculously appear from? It is not possible. There are limited trained health care workers in the world – not just here, in the world. Not enough to care for WAY too many sick people. We have to accept that as a fact.

Rapid Antigen Tests Need to be Manufactured/Distributed

We want more rapid antigen tests made available. Those have to be able to be manufactured in sufficient numbers. We don’t wave a magic wand and the tests just appear in pharmacies nationwide for purchase. The tests have to be manufactured under strict controls, packed, distributed. Staff are needed to run the production – do we have enough staff to run a 24/7 operation? Even if a 24/7 manufacturing process is running in existing production facilities, do we have enough of those? How long to build more?

Should the tests be free? I personally think so given the circumstances, but how is that managed?

There have been cases of price-gouging. Now it appears there is even more confusion, detailed well this afternoon by Luke Henriques-Gnomes in this thread on Twitter:

PCR Tests to be Collected and Processed

Again staffing issues apply when the sheer number of people needing testing are greater than ever anticipated. SHOULD the number have been anticipated? That’s a whole other question I’ll deal with later. At least the training requirements are not as onerous as for doctors and nurses. We could potentially increase testing capacity, but there will always be the physical constraint of staff availability. That is a fact we can’t change quickly.

More Infectious but Less Severe

The numbers game. Each variant comes with unique characteristics. The general population can be confused if the messaging isn’t clear. As the scientists reiterate, a small percentage of a larger number may be larger than a large percentage of a smaller number. The below quote is Dr. Abdul El-Sayed, epidemiologist and former Detroit Health Department executive director speaking to CNN.

“Just because the per-individual risk of severe illness may be lower, that doesn’t mean on a societal level Omicron doesn’t pose a real risk,” he said. “Even a small proportion of a relatively large number can be a relatively large number.”

This is a simple example I whipped up to illustrate what this can mean. The percentages used therein are for ILLUSTRATIVE purposes only. As we can see, triple the cases with half the requirement for hospitalisation still results in MORE patients needing hospital care. The new case numbers jumped 30.78% from December 28 to December 29. Yes, there are reporting delays and all sorts of other variables to the reported numbers of cases on any given day, but they are indicative of what is happening. The most important variable is these are only the tested people: how many globally are not being tested? How many do we not know about at all?

I do note that as of December 30, 1.1% of active cases in Australia are hospitalised. I have been unable to confirm whether this includes Hospital In The Home numbers. Note the source below updates daily.

Edited January 8 to add: now some days later, compare the same data. We can see we now have three times the number of people in hospital, but that is a lower percentage of currently active cases.

The Science, NOT The Politics

Yes, the damn politics. The politics has got to stop and stop now. Right now. This is a global disaster and there is no place for politics. If you aren’t part of a SAFE solution, you’re part of the problem. Point scoring off the other side isn’t helpful: and that applies across the board. Personally, I’m not interested in what political colour you are, you are elected to represent us.

As for threats of war and similar “business as usual” inter-nation “disagreements”: THIS IS NOT THE TIME.

LISTEN TO THE SCIENCE. That’s all I ask you to do. Listen to the science.

There is also a simmering question of a particular religious ideology impacting political decision making. I am avoiding that topic today, other than noting yes, that question quite legitimately exists.

Like it or Not, it IS a Numbers Game

During the last pandemic, the 1918 Pandemic, the global population was less than 2 billion. Now it is 8 billion.

During the 1918 Pandemic one third of the world’s population was infected. It is estimated the population in 1918 was 1.8 billion. Everything is relative: in 1918 our population was much lower, but we also likely had less health care workers per head of population than we do now in 2021. It was also a different type of illness. Covid-19 puts people in hospital for long periods. People technically recovered from Covid-19 remain very unwell for long periods or are permanently disabled with Long Covid.

Back to the numbers. One third of our current population is 2.66 billion people. We already know people can catch Covid-19 more than once, that alone increases the numbers. Yes, we have vaccines and those vaccines have been shown to reduce the severity of the disease. On the other hand, Covid-19 has variants. Those variants may evade vaccines and be harder for current tests to detect.

Are we safe to assume that Covid-19 will not infect a greater proportion of the global population that the 1918 Pandemic did? I don’t think so. SO FAR we have been fortunate. In the two years of 2020 and 2021 our reported total cases are only 284,906,146 which for those into numbers is just over a quarter of 1 billion or 28.49% of 1 billion. That is a long way from 2.66 billion.

Oh, but we have better science now than in 1918? True, we do. Very much so. We managed to get vaccines up and running in basically 12 months, give or take. An astounding achievement. We have dramatically improved treatments of Covid-19 patients and continue to learn. However, there are far more of us, living far more densely and travelling far more widely than in 1918. Those factors work in Covid-19’s favour. Not to mention the anti-vaxxers who risk not only themselves, but society in general.

Then we loop back to the Health Systems are Finite aspect. The health care workers we do have cannot work 24/7, it is not possible, none of us can. If the number of cases requiring hospitalisation or Hospital In The Home or whatever care type might be developed in the future, exceed our health care system resources, we have a problem.

I’m not being alarmist but I see way too much lack of understanding of the numbers.

  • “Just get more health care workers!” – WHERE FROM?
  • “Triage the patients to another hospital.” – And when/if all the hospitals are in the same boat?
  • “Provide free tests now!” – Where is the supply coming from? It takes time…..
  • “Fix the overloaded PCR testing, stop the queues!” – How? Where are the staff coming from? Are there enough test kits?

What IS needed is an acknowledgement by politicians and understanding by the general public, globally, that in a worst case scenario we could be trying to treat an INORDINATE number of people. Australia’s population is 26 million in round numbers. One third of 26 million is 8.66 million people. Of that 8.66 million people, up to 37% could be left with some form of Long Covid. That equates to 3.2 million people.

I certainly hope we don’t reach the levels of the last pandemic – but I suggest it is a very dangerous assumption to assume we won’t.

Close Contact Definitions

I refer readers to the OzSage report linked below, where this point is discussed.

Today the Queensland Chief Health Officer stated the definition of close contacts had to change or the state would cease to function, everyone would be in quarantine.

Not much will function too well if too many people are sick, either. New South Wales discarding spread mitigations and protections when they did was grossly irresponsible.

Long Covid

Then there is Long Covid to consider. So much is as yet unknown, but the more I read, the more concerned I become. I’ve written other articles about chronic illness and society, so I’m not going to repeat myself here. Suffice to say the same problems will exist, but for more people. What are the politicians doing about modelling the social, health and economic costs?

A Guardian article today addresses the issue well: Long Covid is the elephant in the room, but it seems invisible to Australian politicians. The existing chronic illness cohort seem invisible to many politicians, so I’m not surprised they’d have to be dragged kicking and screaming to acknowledge what could be a major increase in numbers.

This UK Long Covid patient has detailed his struggles on Twitter. One of many.

The OzSage Report: 10 Key Points

I implore everyone to read the OzSage Report. Here is Point 5 to encourage you to click on the link below.

The rhetoric that case numbers ‘do not matter’ is incorrect – particularly in the face of the Omicron variant. Daily case numbers are now 10 times higher than during the Delta wave and may be 100 times higher in January. Even if hospitalisation rates are lower with Omicron compared to Delta, a halving of hospitalisation rates with a 10-fold or 100-fold increase in cases will still translate to a high burden on the health system. This is likely to overwhelm the health system, with regional services at particular risk.

The trajectory of observed data suggest that hospitalisation and ICU occupancy are on a steeply rising trend and anticipated to exceed earlier peaks quite soon. In other words, optimistic assumptions about the impact of the Omicron variant on hospital admissions are unrealistic.

Should We Have Seen This Coming?

The answer is yes, we should have. Humans got too wrapped up in The Economy and Growth (I wrote the below article in August, 2020) and forgot we are really just another species of animal on the planet.

Humans are Earth’s chronic condition. We destroy at will. We see our species as the pre-eminent beings on the planet. Although many believe in a God or Gods in the heavens, here on Earth the human species is all-powerful.

The Gods Brought to Their Knees by the Invisible

Scientists have been warning us for years, but we didn’t listen. We didn’t prepare. In fact, in some ways, we deliberately de-prepared: sold off the Fairfield Infectious Diseases Hospital, for example.

In many ways it would be impossible to plan for the sheer numbers. We can’t have excess trained health care workers sitting around idle for generations, or hospital buildings lying idle. Equipment becomes outdated, supplies pass their use-by dates. Vaccines and tests have to be developed specific to the pandemic. The logistics of it all are difficult to grasp.

But we should have seen it coming. For the politicians to act so surprised is ridiculous. We should, as a species, globally, have been prepared to some degree. Not perfectly prepared, for that would be impossible. Yes, in a pandemic there will be unavoidable loss of life, there will be economic losses, there will be disruptions to travel, education, trade, life as we knew it… Yet we could have been better prepared, not only by having plans at a macro level, also psychologically at an individual level, for the disaster that is still unfolding.

There are no miracles.

Hope for the Best, Plan for the Rest

While the Covid-19 variant Omicron may be clinically “mild” for many people (and the jury is still out on that), for some of the population it may not be. Many of us with chronic conditions may have conditions that make catching Covid-19, any variant, a riskier proposition for us. Talk to your general practitioner about your condition/(s) and your risks.

While Covid-19 is not the only driver for any of us to consider our legal documentation – it is particularly pertinent at this time and has certainly prompted me to get my affairs in order.

I am not a lawyer or a doctor: I am a rather experienced chronic illness patient. I am conversant with my risk profile. On that basis the last thing I want to do is leave my family with a medico/legal battle should I end up in difficulty. I want to make things as easy as I possibly can for those left to finalise my affairs.

While we don’t like to think of such things it is important to consider and prepare legal documents ahead of time. The links I am providing in this article relate to Victoria, Australia, however you will find similar in your location.

The details in this article are neither exhaustive nor comprehensive. This aim of this article is to list the documents that it may be appropriate to consider and information links.

Advanced Care Plan/Directive

This you organise with your doctor although lawyers will draft a document for you. Details can be found at Note there are differences between states. This is a document wherein you can detail your wishes about treatment under a range of possible medical or surgical situations.

Appointment of a Medical Decision Maker

Details of appointing a Medical Decision Maker can be found on the website of the Office of the Public Advocate. This can be in place of a Medical Power of Attorney.

You have the right to make your own medical treatment decisions.

However, if you experience an injury or illness that means you are unable to make decisions, either temporarily or permanently, If this happens to you, Victoria’s Medical Treatment Planning and Decisions Act 2016 specifies who has legal authority to make medical treatment decisions for you. This person is called your medical treatment decision maker.

You can choose your medical treatment decision maker by appointing someone to this role, providing you have decision-making capacity to do so.

Enduring Powers of Attorney for Financial, Medical Treatment & Personal Decisions

Details about Enduring Powers of Attorney can also be found on the Office of the Public Advocate.

These ensure that someone you trust can make decisions for you if and when you are unable to make decisions. Given the current studies around cognitive deficits and brain damage in Covid-19 patients, death is not the only concern.

Cognitive deficits in people who have recovered from COVID-19 is an article published by The Lancet.

The Mayo Clinic advises:

Although COVID-19 is seen as a disease that primarily affects the lungs, it can also damage many other organs, including the heart, kidneys and the brain. Organ damage may lead to health complications that linger after COVID-19 illness.

Voluntary Assisted Dying (Victoria)

Under current legislation in Victoria your appointed medical decision maker cannot request VAD on your behalf. The Victorian Government has a website detailing the legislation, Voluntary Assisted Dying. Note that this CANNOT be prepared in advance of any requirement. The criteria are very strict under the current legislation. I include it here only to highlight this is not something that can be prepared in advance, nor can you instruct your medical decision maker to request it, as that is not permitted.

Only you can start a discussion with your doctor or health practitioner about voluntary assisted dying. Your doctor or health practitioner cannot start the discussion. Your family member or friend can be with you when you ask about voluntary assisted dying, but they cannot ask for you. This helps to make sure your decision to seek voluntary assisted dying is voluntary.

Last Will & Testament

There are many available links. I have chosen the Australian Seniors Understanding a Last Will & Testament in Layman’s Terms as a the resource I am providing.

As many people remarry, please note the following:

Marrying (or remarrying) automatically cancels your Will, unless your Will clearly shows you were planning this marriage when you made it.

I mention that specifically because I had that exact discussion with friends of mine recently who actually couldn’t remember when they had made their last wills. Dying intestate is not a financially sensible option as there are fees for the state to administer the estate.

If someone dies without a will, they die intestate. Being intestate means that the laws of the state or territory they live in will decide how their estate is administered. An estate is made up of a person’s assets and liabilities.

Superannuation & Life Insurance

Superannuation and life insurance do not automatically form part of your estate. Superannuation particularly often requires a Binding Nomination form be submitted to the superannuation company and updated every three years (annoyingly).

I strongly suggest your check your specific situation with your life insurance and superannuation companies. The following is the HESTA website as an example.

It’s not the happiest subject – but it’s super important…who will get your super when you die? To be more certain it will go to the people you want, you can sign a binding death benefit nomination.

Take care, stay safe.

Edited to add: Since I wrote this article in December 2021, Four Corners have done a feature:

Some 50,000 Australians are currently under the control of Public Guardian and Trustee agencies around the country.

By law, these ‘clients’ are banned from speaking out about what happens to them, and journalists can be fined or jailed for reporting on them.,-stripped-of/13795520

Although I alluded to this issue in the article above, I didn’t go into detail. If you have not seen this episode, I highly recommend you watch it.

I’m Not Lazy

Neither are YOU lazy. The title above is stolen, with permission, from a social media contact’s tweet.

We’re not lazy, nor are we responsible for other people’s expectations of what THEY think we should or shouldn’t be able to do. Sidenote: often those expectations are based on our appearance. Refer to You Look So Healthy! for more on that.

There are four other articles you may like to browse as background material to this article:

One of the challenges we face is helping people understand the whole energy availability thing many of us struggle with. In the conversation related to the above tweet, J told me she had mowed the lawns, done the edging, walked the dog and cooked dinner. J has the same disease I do, psoriatic arthritis (PsA). While I don’t know or understand the specific expressions of many other chronic conditions, this is one I do understand. J couldn’t see me, but if she could have, my eyes nearly popped out of their sockets.

Other conditions can be very similar, but I will stick with the disease I know for illustrative purposes today.

On a great note, for PsA management, J had certainly been moving. Movement is Medicine! However, J had probably used up more spoons or internal battery than she had available. All that in one day would cost her later, as she well knows from experience.

Society conditions us, well before we get sick, as we are growing up: doing our share, work ethic, earn our way. We then place expectations on ourselves. We don’t want to be sick, we don’t want to let others down by not doing our bit. In the first few years, of course, in the back of our minds we think it is temporary. To understand a bit more on that, you may like to read Will Society Adapt? When? How? Even we ourselves have to adapt to our new normal.

PsA is a very odd disease. At its worst for me, I can wake up in the morning with painful feet, ankles, knees, wrists, fingers; maybe even throw shoulders and neck in on a particularly bad day. I may have to use crutches to get around first thing in the morning. I’ll be unable to turn a tap on. Can’t lift the electric jug, struggle to open the coffee jar. Put on a bra? Are you kidding? Pull on tracksuit pants? Yeah, right. That sort of thing. About 11:30 am I’ll be fine. Virtually pain free. My body will have de-solidified. I’ll head out for a walk, go to the gym and do a weight training session. Sadly 160 kg leg presses aren’t happening any more, but maybe again one day…….. I am a completely different physical specimen at 4 pm than I am at 7 am. I saw my Plan B GP on Tuesday (Plan A was away), who hadn’t seen me for probably a year. She said “You look great!” This was 6:30 pm. I said to her, “You didn’t see me at 7 am!”

This can be VERY difficult for our friends, colleagues and family to understand. You need rest but you also need to go to the gym? That doesn’t make sense! Actually it does make sense and the reasons why are discussed in more detail in the above linked articles, so I won’t repeat myself.

We know, we can see it in their eyes. The doubt. The lack of comprehension of the situation.

We know people think we are just being lazy (at best) or hypochondriacs (at worst). J is right, it is VERY exhausting to be constantly explaining it to people, yet we know if we don’t explain it, if we don’t share the knowledge, social understanding and acceptance will never happen. We use analogies: spoons, internal batteries, even daisy petals. Over time our nearest and dearest do start to understand. If they want to.

If we live by the rules of pacing our activities and energy consumption, many of us can achieve a fantastic very nice quality of life, given our disease. The problem is, to OTHER people our rules can make us look lazy in their eyes – or at least that is how we can feel.

I work six hours a day. I have just entered my eighth year of having PsA, so I’ve had time and practice to build my personal pacing skills. Even so, I still feel guilty some days that I’m not “doing my fair share” at work. I have to lecture myself along the lines of this is what I MUST do or I won’t be able to work at all. I did try full-time for a while in 2019/2020 – it was WAY too much. Recently, we had a systems issue at work. That day I worked ten hours – I was petrified I was going to crash before we solved the problem. Thankfully, I didn’t, but those feelings and fears are what we live with every day. We don’t need to feel others are judging us because we MUST do less than they do in order to regain and retain quality of life and independence.

No, we do not have to vacuum the whole house in one day. A room a day would do!

No, we do not have to mow the whole lawn in one day. J, are you listening?

Spreading out those sort of tasks DOES NOT mean we are lazy. It means we are protecting our bodies, our internal battery and our quality of life.

Today I was going to go grocery shopping. But today is also weight training day. The grocery shopping can wait until tomorrow. Both on the same day would mean I wouldn’t be able to do what I have planned for tomorrow. Grocery shopping will fit with my plans for tomorrow as the overall intensity tomorrow is less.

We are not lazy. I am not lazy. Don’t let yourself be guilted into doing things that break your pacing rules, whatever they may be for you. The goal is to balance activity and energy so you achieve consistency in your state of health.

Will Society Adapt? When? How?

Just over 2 years ago, October 2019, I wrote Society and Chronic Health Conditions. In that article I proposed that as a species we understand three states of health: terminal, curable and healthy. I suggested we are not yet accepting the new, fourth state: chronic illness.

In talking about this situation with a friend recently, I realised my generation is effectively the first generation of this new health state. No wonder we are struggling as a species to adapt. It is all so new. Historically most of us would have died or been cured: there was very little “in-between”. Now we have that in-between, but the powers that be don’t like it. Because that in-between costs money. It doesn’t fit the capitalist dynamic. We are not the only generation: my children are now in their forties and many conditions are not age specific. We are just the first of any number due to scientific advances.

There are many factors at play here. More advanced science. Longer life expectancy. Horrifically rapid population growth (see graph further down) over the last century. Now we are being told by certain theorists we need to increase the birth rate to support society, while that will further degrade our environment. It will also increase the number of people requiring some form of assistance and support. I’m not looking at environmental impacts in this article, but it is something that impacts all of us because chemicals and damage to the environment may well be contributing to health issues in a broader sense. There are many reference and source links (underlined or blue, depending on your device) in this article, so be warned! (Edited 23/01/2022 Since writing this I have looked at environmental impacts in Underlying Conditions)

Science and medicine have advanced in leaps and bounds in the last 100 years particularly. People who would have died 100, 200, 300 or more years ago now can be saved by medical or surgical intervention. We may live the remainder of our lives physically disabled (for example in a wheelchair after a car accident) or we may live with a chronic condition (or conditions) as I do, those conditions held in check or managed by modern medications.

Not only has medicine and surgery advanced, it has improved. Let’s look at knee replacement (because I’ve had one of them, so have patient experience). The first Total Knee Replacement was performed as recently as 1968, believe it or not. However, a German surgeon began the journey when he implanted primitive hinge joints made of ivory in 1860. My knee is titanium, a far cry from ivory.

Medications have been developed and are continuously advancing. Biologics have seen expansive growth since human recombinant insulin was approved in 1982.

As a result of these innovations, developments and advancements the reality is we NOW have more and more people living life with permanent (chronic) health complications than ever before in human history. I’m not terminal: neither am I curable. Thousands of people are in the same situation and the number, the percentage of the population, is growing. in 2017-18, 47% of Australians had one or more of only 10 selected chronic conditions.

Generally incurable and ongoing, chronic diseases affect approximately 133 million Americans, representing more than 40% of the total population of this country. By 2020, that number is projected to grow to an estimated 157 million, with 81 million having multiple conditions.

Source: About Chronic Diseases

The reality is we often reach the point of needing some form of support to live at some stage of our life. In Australia there has been much discussion of late about the Disability Support Pension (DSP) and the National Disability Insurance Scheme (NDIS). People are being rejected or having their support budgets reduced/cut.

The government complains it is just too expensive to provide the supports and pensions. I could suggest if there was less pork barrelling going on there would be more money available, but I digress.

The population of the world has grown from 1.65 billion in 1900 to 7.7 billion in 2019. More than 40% in at least two countries have chronic health conditions – I haven’t been able to source a global figure, but suggest it would be similar.

So what did humans think was going to happen? That the disabled and chronically ill could live on air and water? Many of us are like me, still working, paying our own way, essentially looking after ourselves – for the moment. Even for us, our conditions are often degenerative and progressive: our self-sufficiency may have a time limit. Or the conditions can be decidedly unpredictable: good one day, unable to function the next. Not only that, some of our treatments are not cheap. Government’s choice, society’s choice, is either fund the expensive treatments that keep us as healthy as possible, or look after us when we deteriorate on cheaper but less effective medications.

Or adopt the American style health system where only the rich can afford the good treatments.

‘Profit over death’: millions of American diabetics struggle to afford insulin

I’ll never forget the case of the the 51 year-old who won the lottery so could finally afford to go to the doctor. He died.

Among his other priorities, Savastano, who couldn’t afford life insurance before the winnings and hadn’t been feeling well, wanted to visit a doctor, the station reported.

Even here in Australia where we have the Pharmaceutical Benefits Scheme whereby the government subsidises expensive medications like biologics, we limit who can have access by stringent qualification criteria. While jumping through the hoops required to qualify, the patient may deteriorate badly. An argument can be made that this policy is false economy as the costs of care over time may well outweigh the costs of treatment with better medications. The rich can afford private prescriptions.

As a species we could decide we don’t want to have this new health state of chronic and tell medical science to stop researching, developing and advancing because we just can’t afford the result.

We could accept that only the rich can afford treatments.

We can hope ultimately we will develop cures for these pesky conditions, but what do we do in the meantime?

Or we can adapt as a species. We can accept this fourth health state, chronic, as NORMAL. As normal as the existing states of less-than-healthy of terminal and curable that we have lived with for as long as we have existed as a species. We can find ways to support our people. Accept our new normal.

We’ve made advances with accessibility: ramps for wheelchairs, sounds on pedestrian crossings for the blind, special seats available on public transport. We haven’t really advanced re financial support. I’m not going to quote current federal ministers’ statements on the DSP and NDIS – most of us know their perspective.

The 65-year-old was told last year that her cancer had spread and she had two years to live. “You can imagine the shock,” she says. “Even now, I feel quite well, but the minute I’m physically doing a lot, you can feel the tiredness coming to your body. It’s nothing to do with, ‘I can’t be bothered.’ It’s just your body. You just feel weary. “I said to my son, ‘How could I be expected to do a full-time job? There’s no way.’” Yet it was only with this diagnosis that Penfold’s hospital social worker felt she had a genuine chance of accessing the disability support pension, the primary welfare payment for those unable to work.

Governments tell the voters we are “a burden”. The government fear the ever increasing numbers. While I have every confidence science will in time develop many cures, that’s not the situation at this time. Society needs to adapt. One way or the other, we patients need to know where we stand, we need clarity.

I joke that I work to pay my doctors to keep me well enough to work to pay my doctors. Many of us are in the same boat. The fear that one morning we will wake up and our treatment will have stopped working (it happens) or the condition/(s) have suddenly progressed to the point where the pain is too much to work is very real. Where will we live? In 2019, there were 148,500 households on the waiting list for public housing, down from 154,600 in 2014. That’s households, so way more people. I have heard it is now 155,000 households. Yet if we can’t work, we can’t pay private rent, let alone pay for our medications and the other costs of managing chronic conditions. We don’t own our own home? Well, that was very badly planned by us, wasn’t it – back to us being a burden. Even if we do own our own home, we may not be able to manage it. What if we are in our twenties, no time yet to build a nest egg or have bought a home?

Look at the population numbers again. Not everyone in the world can be a millionaire or billionaire. Oh, we want workers and customers and taxpayers and plenty of them – we just don’t want to have to care for any of them if they aren’t terminal or curable.

For example, although I work, I can’t change my bed linen or clean my shower recess. I have My Aged Care (which I pay for). No NDIS? Well, no, you see, because like many of us, I failed the test of my condition being stabilised or completely treated. I will be dead before I could realistically exhaust all the available possible treatments. My condition is notoriously unstable. I am not alone! I’m merely using myself as an example because I have intimate knowledge of the details of my own case.

As if all this wasn’t enough, we are excluded from Voluntary Assisted Dying (VAD) legislation (because we are never terminal) and now we have the organisations like the ACL fighting VAD:

The current conservative government in Australia needs to go to the polls openly with the policy they really seem to want: to essentially minimise or remove both the DSP and NDIS. Would they actually prefer the ever increasing number of chronically ill people in the population just be put down? Like dogs or cats or horses. Of course, that conflicts with their aversion to VAD. They can’t have it both ways. What is their plan? Do they have policies? I doubt it.

As I have stated before, I don’t like the term “chronically ill” because of the inference of the word “ill”.

I am not ill in the sense I am not able to live a relatively normal life. I’m not confined to bed, I’m not in hospital, I’m not on a drip: I’m still driving, swimming, working. I have chronic conditions I must MANAGE, I can never stop managing those conditions, but I am not ILL in the sense of the common usage of the word. I stress the difference between common use and medical use of the word ill.

As a species, as a society, humans MUST determine a humane solution to this problem. As I wrote at the top of this article, there are many factors involved here: environment, population growth, advanced science, advanced medicine and of course the greatest god of all, The Economy.

While I am not suggesting society can afford to provide 24 hour home care for every chronically unwell person, I am saying we need innovation here. There may be solutions no-one has thought of yet. While my generation is the first in any great number, there are the generations after us. This social conundrum is NOT going to disappear. It is going to get worse before it gets better.

Society needs to adapt. Don’t throw us away, for we are your lab rats in this period of history. Future generations will benefit as science develops and perfects treatments and hopefully cures.

Foot Surgery

As if a replacement knee wasn’t enough, I had to have foot surgery a year later. Graphic images warning: if you dislike scars and stitches, proceed with caution. Note: the painted toes above are BEFORE surgery – thought a scary pic was not a good opening pic!

There was a bit of a story to it: innocent little me asked the knee surgeon to remove a couple of annoying ganglion cysts on top of the bunions while he had me under for the knee. Seemed logical to me, I was going to be asleep, he’d have a scalpel or two lying around!

He was horrified. Knee guys, I discovered, do not touch feet – at least not at the same time as fiddling with knees. Infection control. Fair enough, keeps me safe! So off I went to see a foot guy.

Engineering comes into play here. The surgeons prefer to go down the leg – so hips, then knees and lastly feet. But yes, my feet needed some surgical intervention. Foot refurbishment was his jocular phrase to my physician. I liked the term, but I’m assured it isn’t actually a medical term.

The plan, therefore, was to wait until I’d had the second knee done. However, the second knee recovered relatively well from the strain of the extra load during recovery from the first knee surgery, while the big toes were not so happy. The ganglion cysts had faded, but would most likely come back if the feet weren’t refurbished. So the decision was made to fix the feet before the second knee (which might last for a couple of years if I’m lucky). At this point I was just having the bunions (on big toes) and bunionettes (on little toes) corrected (which would remove the driver for the ganglion cysts). Unfortunately, I needed to change surgeons prior to the surgery and the new surgeon had a whole different plan of attack.

First step was an MRI of my left foot to confirm his suspicions. Yes, my big toes needed a “fusion of hallux” (fusion of the 1st MTP joint) and there was a cyst drilling a hole in my metatarsal bone. Oh. That needed a bone graft. OH.

It seems that just like my knee, where there had been a cyst dissecting my popliteus muscle, here was another cyst only this time it was attacking my bone. The osteoarthritis and the psoriatic arthritis had found another place in my body to have a party, it seems. Together, they are more destructive than alone, I am learning.

He also wants to replace my ankles, but that is a story for another day. One step at a time!

Preparation was very similar to the knee replacement preparation, so I won’t go through it all again. Had the same physician, Dr M, who is a darling. ECG, bloods, etc etc.

So on May 6, 2021 I arrive at the hospital at 6 am.

Waiting for the action

Just for later comparison, here are my toes before surgery – as you can see there is no gap between my big toe and the second toe. But this is not nearly as misaligned as some photos I have seen.

Before the action

What I woke up to was this view of my feet! The pink stuff is the antiseptic wash they use in theatre and my feet are elevated. For the first two weeks, the feet are elevated 23 hours a day. ONE hour a day “feet down” is permitted for toilet privileges. Shower with the feet bagged. So the pink stuff stays, really. All weight is through the heels when walking, no rolling of the foot at all. No toeing off! No driving. There is never any driving.

After the action – duck feet as protection

This is what I now have in my big toes. There was discussion about these prior to my going into theatre. I wanted to know if they are actually this pretty blue colour. While the surgeon looked at me as if I was from outer space, the surgical Fellow assured me yes, they are. It is an important detail. I refer to these as my toe jewellery. The bone graft to fill the hole drilled by the cyst was synthetic bone – yes, I asked that question too.

Apparently, I also have screws in my little toes now, I only found that out at my six week post-op review.

Of course I had nail polish and lippy on as soon as I was allowed – it was a whole THREE days before I was allowed nail polish! Naturally it matches my PJs – well, that pair, anyway.

The anaesthetist, the physician and the surgeon had all warned me that post operative pain management can be difficult with feet, so I had mentally prepared myself. Although I was sure foot surgery would not cause the glute spasms that the knee surgery had caused, I still watched the clock until the 10 hour mark (that was when the spasms kicked in after the knee surgery) had safely passed. Despite the warnings, which were much appreciated, I was one of the lucky ones. I had a virtually pain-free recovery. I cannot express how grateful I am for the excellent care, although I do understand there may have been some luck involved. The nurses would come around to do obs and ask the “On a scale of 0 to 10, how is your pain” question and I would say zero. Admittedly, the pain medications were kept on schedule, but really, it was a pain-free journey.

The hardest part was no movement. I hated it with a vengeance. I am told the ankle surgery is longer, so I am not in a rush. Psychologically it is really, really difficult for me to do nothing physical: no walking, no swimming, no weights.

I didn’t hire the cushion from the surgeon for elevating my feet in bed at home. My daughter and I elevated the foot of my mattress to achieve the same effect.

At two weeks the stitches came out, steri strips went on and I was FINALLY allowed to get my feet wet!!! This was a wonderful day! I was shocked at how dry my skin was after two weeks of being untouched. I also suspect the antiseptic wash had quite a drying effect. This dryness resolved very quickly, thanks to QV Cream and being able to finally shower (but definitely NOT soak) my feet. I also was given smaller duck feet. The nurse taking the stitches out was quite horrified at the size of the duck feet I had been put in after surgery. Now I could see my toes!

These smaller duck feet were also easier to walk in. The next four weeks were pretty much the same. I started working again, from home, and kept my feet as elevated as I could under the desk. For that my daughter set up an aerobic step platform on two reams of paper. Necessity is the mother of invention. It worked. Swiss balls are excellent for elevating when sitting in a lounge chair.

At six weeks I went back to see the surgeon for the post-op all clear to walk and drive and live a normal life again. He was pretty pleased with my progress, as was I. I had started 500 metre walks on the Saturday prior, so I had cribbed a couple of days. It was my birthday, I could not stand being cooped up on my birthday! All was well. The shot below was taken exactly a month after surgery. Now, nearly three months after surgery, that gap between the toes still stuns me – compare with the top photo with no gap. It is not this dramatic when standing on my feet!

In hospital, during one of the frequent checks, a nurse asked me if I could spread my toes. I looked at her stunned. I didn’t know anyone could spread their toes like we can spread our fingers. Apparently being able to do so is good for our feet and our balance. I also discovered I am not the only one that cannot spread my toes. I can wiggle, I can bend: but no spreading.

I have had to buy a couple of new pairs of runners as my usual runners were just a little snug when I was first allowed out of the duck feet. I also developed blisters on the lateral wounds (little toes). Nurse said that is not unusual as the skin becomes very calloused where there are bunionettes. The blisters weren’t really an issue though, just applied Betadine for a few days.

The right foot little toe took a little longer to feel 100% than the left foot, but we can’t expect mirror image healing.

Now there is hardly even a scar to be seen, I’ve healed very well.

I had a great recovery. I will end this with this caveat: not all patients will necessarily be as fortunate as I was, there may be some post-operative pain. Even so, the medical profession are constantly improving pain management. Discuss it with your surgeon.


For the uninitiated, flares are what we chronic condition people call the times our condition (or conditions) decides to remind us it exists, usually in no uncertain terms.

Barb, who, like me, is a complex comorbid patient including psoriatic arthritis, sums up flares succinctly!

The unjoys! The phrase “Oh the joys!” is in common usage, the implication being something is not actually so joyful. But I love this new word. For me, it hits a home run.

I had one yesterday. While the experience is fresh in my mind, I’m writing about it. We tend to get used to them, they become just part of our new way of life, while healthy people can find the flares of others confronting.

If you are friend, family or colleague of a chronic condition person, or you are new to this chronic world, hopefully I provide some insight to “what happens”. Everyone is different, what I describe is specific to me, my conditions and my current circumstances, but should give readers a feel for flares generally. Flares can be long or short: once my right wrist flared for about eight hours, then was fine. No rhyme nor reason.

Yesterday’s flare was different. For a start, it was whole body, not just one joint.

I now realise it started on Wednesday. I was driving to the office and my upper arms were sore when dressing and driving. Sore upper arms usually means shoulder inflammation. Nothing too bad, but I did take panadol osteo to see me through the day. Driving home from the office that night I felt nauseous and sleepy and nearly drove through a red light. Not good.

Thursday was a little worse, more areas were sore. I was WFH that day, so I managed. Even my total knee replacement scar felt tight, stretched and tingly. This was a new thing. The joints at the base of my thumbs were sore. My right (unoperated) knee was painful. My right hip was grumpy. You don’t need the whole list!

I woke up Friday morning in a full flare. Not only did I have many sore bits, I had no energy. I had to work, because…. deadlines. At least I was working from home though. No meetings scheduled. I certainly would not have gone into the office, but I felt I could manage the most important tasks in solitude at home. I resorted to panadol osteo and a stronger pain med to get me through the day – I hoped.

Yesterday is the first time ever I have worked in my dressing gown. I am the sort that puts on the lippy and mascara every day, working from home or not. For me to not even get out of my dressing gown is an indication of how crap I was feeling. Healthy people reading this may be horrified at this admission – chronic people will be nodding their heads and thinking, “Oh, yes, know that feeling well.” I did 1,172 steps for the day, between my office and my kitchen mostly.

It is very hard to explain how awful it actually feels. I liken it to possibly feeling as if you have run a marathon – at least that is how I envisage a marathon runner may feel at the finish line. It is only the start of the day, but you feel done already. Like, literally, DONE! That’s before any pain is taken into account. Or maybe the old “run over by a truck” phrase is applicable.

I did manage to get through the work day, almost – I finished slightly early. I doubt my productivity was any way close to normal, but I got some important deadlines met. I will probably work a few hours this weekend to catch up on other tasks. If at all possible DO NOT DO THIS! If you are flaring, REST. I’m setting a bad example here, I know that – but my example also underlines the fact sometimes we are caught between the devil and the deep blue sea.

After I finished work I sat in an armchair and my lumber spine decided to be excruciating. It had, I’ll admit, been building as the day wore on, now it was awful. No idea why – my lumbar spine hasn’t been a problem since 2017 (except for changing the bed linen, that irritates it). Pain medication was required, most definitely. Then, I got stomach pains. My eyes were dry and irritable. Like, what next?

This morning I woke up feeling absolutely fine! Made myself a lovely cinnamon rolled oats and pink lady apple breakfast, have been for a 1.6 kilometre walk, had a coffee at my local café. After lunch I went to the gym for a strength training session. The only slightly sore bits are the joint at the base of my right little finger and only if I hyperextend it, plus my soon-to-be-operated on toes are a bit off (but that’s understandable). I have energy, I feel perfectly fine.

The flare is over, just like that. Gone.

What causes flares when we are on a stable medication that is working and we are doing all the right things (eating properly and sleeping, hydrating, exercise)?

I will never forget my rheumatologist saying to me in late 2014, “Get the stress out of your life.” Great advice, but easier said than done. While the evidence is pretty conclusive that stress exacerbates many conditions and causes flares, we still have to live life! Earn money to pay the bills.

If I stand back and look at what has been happening in my life during the last few weeks there are several factors that alone may not be a problem, but the culmination of the stress of each has resulted in this flare. If you are flaring more than usual, take a look at everything that is going on in your life in the time period preceding the flare. In my case, right at the moment:

  • Pending surgery, with a late change of surgeon
  • Late change of the actual surgery procedure (extra stuff)
  • Teaching a relief staff member to do my role while still doing my role
  • Usual work deadlines
  • Fitting extra pre-op tests into my schedule
  • Mountain of pre-op paperwork
  • Lack of exercise due to work hours and therefore internal battery depletion
  • 42 minute phone call to Medicare – even things like that add to the stress load
  • I’d let my dietary protein drop while distracted with the above concerns

There is stress related to each of the above. Any one item alone is probably not an issue: add them all up and the body goes “What are you doing to me????”

Realistically we can’t avoid these life stressors. We can’t necessarily spread them out over time to minimise the impact on us, sometimes they just all come together. I haven’t really flared for years. You might ask what about the knee surgery, did I flare then? No, but the list was smaller then. No late change of surgeon, no late change of proposed procedure, I wasn’t working at the time so no work-related pressures. I was getting exercise. Sure, I was unemployed and THAT alone is hugely stressful, but I was able to mentally put that on the top shelf out of sight while I concentrated on the knee. I knew the knee rectification was important in order to be able to get a job – I prioritised.

There is no way I could have avoided the culmination of the above stressors, it is just the way life has played out over the last week. I saw the new surgeon on Thursday, had to digest his unexpected news about what needed to be done, fit in an MRI on the Saturday, phone consult and decision on Tuesday, flare started Wednesday, Friday full conflagration.

Surprised I feel so fantastic today after feeling SO bad yesterday. It really is like getting into a brand new car: today I am driving a brand new car! Yet that is what flares can be like and why it can be hard for healthy people to understand or, worst still, easy for assumptions to be made about “it is all in your mind”. No, it isn’t: it is what happens physically.

If you are friend, family or colleague of a chronic person, including healthy looking chronic people, please be compassionate. Be supportive. We don’t like these flares, we don’t have them to inconvenience others!

If you are a chronic condition person, please share any advice or your experiences in the comments.

We Need Personalised Numbers!

2,000 calories. 10,000 steps. These numbers float around and almost become related: subconsciously there can be a belief that if we do 10,000 steps a day we’ll be fine eating 2,000 calories a day! Will we?

2,000 calories a day is as much a myth as is the 10,000 steps a day. While there is always the caveat that the 2,000 is an average recommendation for the average person, etc etc, it is the 2,000 number that sticks in people’s minds.

Based on these rather wide, and self-reported, ranges, some pretty loose rounding happened, and the number 2,000 was settled on for a standard. In other words, not only was the calorie standard not derived based on prevalent scientific equations that estimate energy needs based on age, height, weight and physical activity levels, but the levels were not even validated to ensure that the self-reported ranges were actually accurate.

US News
From Samsung Health app

The 10,000 steps originally came from a marketing campaign.

The magic number “10,000” dates back to a marketing campaign conducted shortly before the start of the 1964 Tokyo Olympic Games. A company began selling a pedometer called the Manpo-kei: “man” meaning 10,000, “po” meaning steps and “kei” meaning meter. It was hugely successful and the number seems to have stuck.

Garmin Connect app

Readers who know me on social media know I am very big on getting my movement every day. This website originated from my personal dedication to Movement IS Medicine. So am I against pedometers? Not at all, I highly recommend pedometers. Just forget about the 10,000 steps a day.

Let’s look at each of these aspects of our lives separately. First, the calorie conundrum.

2,000 Calories?

My favourite illustration is the car fuel tank versus the human body. My car’s fuel tank capacity is 60 litres. No matter how hard I try, I can’t put more than 60 litres of petrol in that tank. My body? Ohhhh, I can consume as much fuel as I like. I would just keep expanding to store it all!

I have several factors at play:

  • I’m over 65 – age reduces our basal metabolic rate
  • I’m short
  • I have a chronic condition which limits my fuel burn
  • I’m on medications – medications can affect metabolism.

It would take me an hour of weight lifting in the gym on top of my three walks a day and 7,500 total steps to burn slightly over 2,000 calories a day. My usual burn would be 1,800 on a good activity day. On that basis, if I consumed 2,000 calories a day I’d be storing 200 calories a day. A rule of thumb is one kilogram of fat on the body is 7,000 calories, so I’ll let you do the maths on that. Yes, I lift weights and I walk, but not at the intensity required to be building too much lean muscle with that extra 200 calories a day!

In the image above from my Samsung Health app 1,352 calories a day is recommended for me given my age, weight, height and gender. It doesn’t know about my medical conditions or my medications – if it did, it might recommend less! That is 648 calories less that the 2,000 number that gets thrown around with abandon.

My nutritionist recommended 1,400 a day for me, just for comparison.

Everyone is different and we need to tailor our intake for our particular circumstances and output (burn). We also need to be very careful about what we eat as we have less calories to “fit in” the needed nutrients. For example, I aim for 1.5 grams of protein per kilo of body weight per day. The extra protein chews into my calorie allowance.

Those of us with chronic conditions that have a boom/bust aspect do not have the luxury of “burning it off tomorrow” either. We can’t “do extra” or we end up with a flat battery. It is all interwoven.

10,000 Steps?

I aim for 7,500 personally, at this time. A pedometer is a good way of measuring how much we are moving. It is not the number itself that is critical, it is the consistency. Not moving leads to de-conditioning which is not what we want as it has negative impacts on our bodies.


A pedometer is also useful when it comes to calculating our pacing up. It is an indication of what we have done and therefore helps us calculate what our 10% increase target is. It doesn’t matter if the number is 2,000, 3,000 or 8,000. It is the relatively and consistency that matters.

I talk about steps as part of my movement regime because it is what I and many other people use. There are, of course, also many chronic condition patients who use other movement modalities. The underlying premise remains the same.

Tracking and Recording

I track and record because let’s face it, even healthy people forget they had a muffin at morning tea. Add cognitive impairment on top of that and it is easy to forget what we ate during the day. I’d be hopeless if I didn’t keep track. With only 1,400 calories to play with, I need to make sure I don’t accidentally eat 2,000!

The same with activity/movement. It is easy to think we moved more than we have and over time we find we’ve paced down unintentionally instead of UP. Our pain levels may increase as a result of less movement and more weight. Not what we want at all.

Personalised numbers are needed. Know our BMR, know our limits, work out our personal parameters and targets based on our individual circumstances and bodies: age, gender, height, weight, medications, conditions.

Personal Energy Use

Early in my chronic illness life, I wrote an introductory article, Pacing for Beginners. More recently, I wrote about Pacing THRU, Pacing UP, Pacing DOWN.

Pacing, balancing my life, has become even more critical since starting a full-time job. The earlier articles talk about the spoon theory and the battery analogy. Today I’m going to stick with the battery analogy as we all understand what happens when our mobile phone battery dies. That’s it. The screen is dead. You can’t make a call. The only option you have is to recharge the battery.

I find energy difficult to write about. I can’t quantify it like I can quantify calories or steps or weights. Energy seems elusive, hard to pin down. Even though I am using the battery analogy, I don’t have a charge meter on my arm. I can’t tell how much battery I have left at any given point in time. So if it seems like I’m pondering as I write, it is because I am pondering as I write.

Many of us with chronic conditions are a bit like a mobile phone. The battery has a limited capacity. I’ve written about fatigue/lethargy before too, in When was the Last Time You Yawned? Working full-time hours again, I have had to revisit my condition management plan to ensure I avoid the dreaded Boom/Bust Cycle. So far, I’ve managed, although my weight training has taken a bit of a back step, sadly.

The difference between me and my phone is if my phone goes flat, I can plug it into power, turn it on and make a call. If my battery goes flat, that is it. Coffee is not going to help. A sugar hit is not going to help. In fact, either might make the situation worse. Imagine if that phone battery could actually go negative and had to be charged back up to zero before use, even when connected to power. THAT is how we can be (not how we can feel, how we can BE) if we are not careful, if we break the rules.

While I was working part-time, I had everything worked out beautifully for me. I got the exercise I needed, the sleep I needed, I did my job well. I never let myself get a flat battery.

While I was not working in the early part of 2020 my plan was to pace up my exercise to build physical resilience in readiness for a new job. With the success of my new treatment, I could do this. There were some interruptions! A knee put me in hospital, then Covid-19 lockdowns followed by a total knee replacement meant things were a bit stop-start, but I was way ahead of where I had been at, say, the end of 2016.

Working full-time has changed how I can arrange my time and also shone a light on the fact the boom/bust cycle is still very much a risk. There have been times at the end of the work day where I quite simply feel my brain shut down. It goes from 90 miles an hour to a dead stop. Nothing I can do about it. The battery is dead. It isn’t just about physical activity, this battery also runs our brain.

It is challenging for people who have no prior experience of these sorts of conditions to understand what happens. After all, many of us, myself included, LOOK fine! It took my daughter some time to come to grips with it, but she now asks “Do you have enough spoons, Mum?” when suggesting something.

I’ve become better at declining social invitations – no, not on an evening before a work day, or no, not two events on one day.

Every activity we do uses battery power. Showering, drying our hair, driving, working, exercising, cooking. In my experience some things use more battery power depending on the time of day: driving is a classic example. Driving for one hour in the morning is not nearly as tiring as driving for one hour in the evening after a day at work. It is almost as if once the battery gets low, it depletes faster. We have to be aware of all these things. I don’t want to cause a fatal car accident because I lose concentration because I haven’t paid heed to my battery level. Look at the pace column of my walks in the image above. the first walk of the day is the fastest, the last is the slowest. This is a constant pattern.

Early in my journey, I would have been unable to do a weight training session and grocery shopping on the same day. That would have used way too much of my battery. Even now, I shower in the evenings. Why? Because I can do it at a slower pace in the evenings and I am not using up vital battery life I need for the work day.

A good night’s sleep should recharge us, you say? We wish that were true. In many cases it is true – unless we have drained too much – then we end up in that negative charge scenario. Not good. However, disrupted sleep is often a symptom experienced by those with chronic conditions. Imagine trying to charge your flat phone, but the charger plug keeps falling out of the phone overnight. In the morning your phone battery is still at only 50%. That can be us.

Strength can fluctuate as well. I happily did 32 kilogram chest press sets one day with every intention of increasing next visit. Next visit I struggled with 25 kilograms. Why? No idea. By no idea, I mean no rational “healthy” explanation. Just that day my body said, “No, not today”.

Endurance is linked to our battery too. Some days I can walk two kilometres easily in one walk – other days I have to stick to three separate one kilometre walks. I’ll feel exactly the same at the start of any walk – then sometimes the body just says, “No, not today”. Part of this is linked to my not having the time available at the moment to consistently Pace UP. Between work and weather I have been limited to grabbing my walks in a somewhat patchy manner which breaks all the rules of pacing. Consistency is key. I’m not getting consistency. I suspect similar applies to the weights.

It is very hard to explain to people what this whole energy thing is like. How we constantly have to be aware of how much battery we’ve used. Healthy people would not, for example, think of having a shower as using energy, or should I say using any great amount of energy. I can assure you, many of the chronic illness community will attest to having to rest after a shower.

In my last article I raved, quite rightly, about the medication I am on. I also stated it hadn’t completely solved the energy/lethargy/fatigue aspect, or the “brain fog”. Despite my writing about energy today, these aspects are still much improved from where I was three years ago. To give some sense of measurement, three years ago I was working 24 hours a week and Saturday morning would always be a recovery morning – I’d do nothing until at least noon. Now I am working 38 or more hours a week and I’m actively doing something by 10 am on Saturdays. I might be at the gym, grocery shopping, doing laundry: I’m active. So a major improvement. And some quantification, which makes me happy!

However, I’ve had to cut my second weight session a week because the energy required to drive to the gym, do weights, drive back and then shower is more than I can manage at the end of a work day. I rarely write any more because usually by the end of the work day my brain has said, “No, not today”. I started this article on December 31, it is now January 16 and I still feel this is very scrappy writing. On the other hand it is a very scrappy topic: as I said I can’t quantify it very well. My thoughts about it come and go: after all, we learn, over time, to live with it. It becomes our new normal. At the same time we recognise that our healthy friends, family and co-workers can be baffled by something they have no experience of and it is not visible.

When I wake up in the morning, assuming I haven’t overdone it the day before, I feel perfectly “normal” just as I did before I became a chronic condition patient. The main difference is at the end of the day I will NOT feel as I did at the end of a day back then. Furthermore, depending how much “charge” I use during the day, I could hit that flat battery state earlier in the day. Other patients will not be as fortunate as I am, I am aware of that. So readers, just because I say I can do something, DO NOT, please do not, assume your mother, father, sibling, friend or co-worker can. They may be “better” or “worse” that I. I am simply n=1 – I’m not a study, I’m just one example trying to explain what it can be like!

As I write, at the beginning of 2021, I am very concerned for the long haul Covid-19 patients, many of whom cite fatigue as an ongoing issue. While the studies of this phenomenon may shed scientific light on ME/CFS, we will also have more chronic patients. My thoughts on society and chronic conditions are expressed in Society and Chronic Health Conditions. As communities, we have challenges ahead.

18 Months In – Thank You Science!

My clinical trial rocks! No other way to describe it! If you are unfamiliar with the backstory, there is a series of articles, the first of which is A Clinical Trial – Patient Journey – Part I, exploring how I came to be on a clinical trial and the initial phases. In summary, I am on a clinical drug trial for a medication for psoriatic arthritis (PsA), a condition that affects an estimated 24 in 10,000 people (0.24% of the population).

I am now 18 months down the track, so thought it time for an update on progress!

No sore entheses! This is fantastic. The enthesis is the connective tissue between tendons/ligaments and bone. PsA rather likes entheses, unfortunately.

At my last injections I had ONE, let me say that again ONE, toe joint that glowed faintly when all the toe joints were tested. That’s a major improvement from 20!

No sore finger/thumb joints. Not one. The base of my thumbs used to be really painful. I am also no longer splinting my fingers at night on a daily basis to prevent waking up with my hands locked into fists. I find I may have to splint them about a week out from my next injections, but not always.

Left and right index finger splints

My shoulders are fine. Admittedly I do a series of exercises to maintain my shoulders which have helped considerably, but the reduced inflammation is fantastic.

My wrists, which would flare regularly, have not flared for months. I can’t remember the last time.

There has been no progression to other joints. There was no hip or elbow involvement, for example, and there still is no hip or elbow involvement.

My skin in 100% clear. Yes, 100%, clinically assessed.

My finger nails are back to being perfect, although two toe nails persist in having white spots and and the tell-tale ridges across the nails. But they no longer crumble off.

No dactylitis (sausage fingers/toes) this year.

I have lost the 20 kilograms I’d gained with all the various medication changes prior to starting the trial.

Energy levels are much improved. I won’t say back to normal, but much better than previously. This is evidenced by the that fact I am back working full-time. No, I did not take on a senior management role, that would have been too much, but I’m working.

The dreaded brain fog is also much improved, as I have noted before. I don’t like the term brain fog, as readers may already know, but everyone is familiar with the term.

No adverse side effects! After my previous experiences, this is yet another fantastic aspect for me personally.

At my latest appointment, one of the staff commented, correctly, I was lucky I don’t have any joint deformities, especially of the hands. I put this down to early medical intervention – I was lucky to be diagnosed early in my journey.

I’m not cured. I am as close to being cured as I probably ever will be and that is a great thing. The medication, risankizumab, isn’t the only weapon in this war though. I am, as is well known, I firm advocate of Movement is Medicine. I keep my muscles strong. I still wear my “special” shoes to help my back. I had a total knee replacement this year, osteoarthritis – not something risankizumab can fix. Overall, I am very happy with progress.