Underlying Conditions

In 2017 I wrote Why Do Our Bodies Attack Us? Like many of us, I wondered WHY did I have a chronic condition (otherwise often known as an underlying condition). Most of my working life has been about root cause analysis – naturally I apply that to myself! It is a bad move, I don’t recommend it, you can drive yourself nuts!

More recently, December 2021, I wrote Will Society Adapt? When? How? looking at society’s lack of acceptance of chronically ill people. I specifically noted I wasn’t looking at environmental impacts in that article, but we can’t ignore the impacts we ourselves, as a species, have created in the same span of the last 100 years or so. In that article I proposed society has yet to adapt to this new chronic state of health, and I referred to my generation as being the first generation of chronic people in any great number. I essentially attributed our survival to improvements in medical science keeping us alive, but why do we fall sick in the first place, in ever increasing numbers?

Regular readers will know I am a big supporter of the work of Julian Cribb, an Australian author and fantastic science communicator. He has recently released Earth Detox – How and Why We Must Clean Up Our Planet.

Every person on our home planet is affected by a worldwide deluge of man-made chemicals and pollutants – most of which have never been tested for safety. Our chemical emissions are six times larger than our total greenhouse gas emissions. They are in our food, our water, the air we breathe, our homes and workplaces, the things we use each day. This universal poisoning affects our minds, our bodies, our genes, our grandkids, and all life on Earth. 

https://www.cambridge.org/us/academic/subjects/earth-and-environmental-science/environmental-science/earth-detox-how-and-why-we-must-clean-our-planet?format=PB

I did refer to chemicals in my 2017 article cited above. I’ve also looked at plastics in Packaging Our Pills in Plastic which includes some videos – visit that article if you are interested.

So while some science is keeping us alive, our tendency as a species to misuse other science for selfish reasons is potentially, at the same time, making us sick. Why did I choose selfish in that sentence? Let’s take plastic as a classic example. When I was a child plastic was not really a thing. Shopping bags weren’t plastic. You didn’t put your fruit and vegetables in plastic at the shops. Glad Wrap? I do remember plastic bags for freezing meat. Pills were still in glass bottles.

But plastic was convenient and we started using it for EVERYTHING! Our wild life has been paying the price for years, but it seems we have too. We just didn’t want to acknowledge that fact because that would be inconvenient and if there is one thing the human species hates, it is being inconvenienced.

Of course, all of this ties in with our population growth: if there were less of us, we’d use less of all the “stuff”. Less MIGHT be manageable. That is a big “might”.

I’m going to turn 67 this year. In my first ten years of life I lived on a farm in the middle of nowhere, BUT I was still exposed to many chemicals. Sheep dip. Top dressing. Weed killers. All before the many safety tests and regulations of today were in place.

Later I moved to the city: car fumes, plastics.

“It would be naïve to believe there is plastic everywhere but just not in us,” said Rolf Halden at Arizona State University. “We are now providing a research platform that will allow us and others to look for what is invisible – these particles too small for the naked eye to see. The risk [to health] really resides in the small particles.”

https://www.theguardian.com/environment/2020/aug/17/microplastic-particles-discovered-in-human-organs

Yes, I have psoriatic arthritis (PsA) and a wonky thyroid (plus a few other things) and yes, there is a genetic component to PsA. What triggered the expression of the condition? After all, genes or no genes, my disease hasn’t been active all my life. What triggers any number of the conditions now prevalent in the chronic illness community, even if there are genes playing a role (in many cases, not yet proven)?

We have to stop blaming our chronic illness patients for being chronically ill, when it is very likely it is the path humans have chosen that has created many of us in the first place.

In our current situation in 2022, chronic illness has suddenly risen to the surface as a “reason” people die of Covid-19, so more people are aware of our existence. I myself am in four Covid-19 risk categories, the most dangerous to me being that I have an underlying inflammatory condition (PsA). We know Covid-19 can cause lots of inflammation: I’ve already got that going on, so I have this image in my mind of Covid-19 entering my body, running into PsA and my PsA saying, “Mate! Great to see ya! Let’s party!”

According to Professor Jeremy Nicholson, there are only about 10% of people in Western society that are “really, genuinely healthy”. You can find that quotation at 31:40 in the second video on Better Health, Together: Living with COVID in 2022.

I’m not suggesting 90% of us are at high risk of imminent death from either our conditions alone or our conditions plus Covid-19. We DO need to know which underlying conditions place us at higher risk of severe Covid-19 in order to be able to adequately take whatever additional protections may be necessary. The fact we are at a higher risk cannot be ignored. I see many on social media particularly suggesting the underlying conditions are irrelevant. They are relevant. We can’t ignore reality because we find it unpalatable. I most certainly think the politicians could separate the sad news of deaths from the statistics relating to underlying conditions. This is where the 90% really comes in – as in, it is potentially most of us!

As I am known to do, I have digressed – or have I? Covid-19 is perhaps a wakeup call. As a species we have created a state of ill-health as “normal”. Because we want our pollution and our chemicals and our plastics – but as Julian writes, we are paying the price. We’ve been somewhat quietly paying the price for a while, now Covid-19 has highlighted our vulnerability.

I know I have a chronic illness – many people do not yet know they have one. Conditions can take a while to be evident enough for the person to seek medical help. I am quite sure my PsA was active at least two years before I was diagnosed. In other situations, many people struggle to get a diagnosis of various conditions for years.

I am NOT suggesting that had Covid-19 come along in 1819, or 1719 that we would have been in a overall healthier state as a species. There were other considerations back then. However, we have changed our world, our environment, our living conditions, massively in the last 100 years. We’ve solved old problems, but created new problems.

I am a massive fan of science generally and medical science in particular, however I am also very aware of the human tendency to misuse anything we can if we see a personal advantage in doing so. Covid-19 gave us a shock: we were the Gods brought to our knees by the invisible.

We are not just destroying the environment of the planet we inhabit. We are not just destroying other species. We are possibly also destroying ourselves.

So, About the Safety Nets Thresholds

Introduction

Some years ago in Australia it was possible to claim a certain amount of out-of-pocket medical expenses on one’s tax return at the end of the year.

A few years ago, this changed. It was replaced with a system of higher rebates once a certain level of out-of-pocket expenses had been reached for the calendar year. This is beneficial, as the patients don’t have to wait for that money to be received once a year at tax time.

I have discerned some confusion about how this all works, so this article is an attempt to put “how it all works” in simple terms.

The one aspect I think is MOST important is registering as a family or couple, especially if you have a person in your family with a chronic or underlying condition. Watch out for that heading below!

Please note if you are reading this article after 2022, you may need to locate current links. The links given herein are current as at the time of writing, for 2022.

PBS and Medicare Thresholds

The Pharmaceutical Benefits Scheme (PBS) and Medicare Benefits Schedule (MBS) are managed differently and have different safety nets thresholds. It is important that both are understood.

Medicare is managed centrally and the details and your current status is easily accessed in your Medicare app if you have it installed on your phone or via MyGov/Medicare.

Pharmaceutical thresholds are tracked by your pharmacist, so if you get prescriptions from different pharmacies on a regular basis, you could be missing out.

Medicare Safety Nets Thresholds

The Medicare Safety Net Thresholds are set every year for the calendar year. Once you reach the threshold applicable to you, you get a higher rebate. What can this mean in dollars? Please note the below example is across two different years, so the rebates shown may have moved slightly. Also, different item numbers may attract the same consultation fee but have different rebates based on the item number. For example, a psychology consultation fee may also be charged at $210, but as it is a different item number than a GP consultation, the rebate will be different.

Given the above caveat, the below is sufficient for illustration purposes and the examples are actual transactions of mine.

StatusConsultation FeeRebateOut-of-pocket
Before I reach my threshold (from start 2022)210.0075.75134.25
After I reach my threshold (from end 2021)210.00183.0526.95

As you can see, after I reach my threshold, my out-of-pocket is reduced by $107.30 (for this consultation fee for this MBS item number).

https://www.servicesaustralia.gov.au/what-are-medicare-safety-nets-thresholds?context=22001

Note all of these refer to “out of hospital” services. If you receive a service in a private hospital as an inpatient, the out-of-pocket costs will not count towards reaching your threshold (although the graphic above doesn’t state that), nor will you receive the higher rebate for any services you receive as an inpatient. I know this from personal experience!

Remember imaging and pathology fall under this scope.

Verified & Unverified Costs

In most cases these days, you pay for a consultation at the time of the consultation and the practitioner’s staff submit your Medicare claim for you. In that case the cost is a verified cost. However, if this does not happen, be aware there will be extra steps.

Verified costs are when you pay your doctor’s fee before you make a claim from us. When this happens, your gap amount and out of pocket costs count towards your thresholds. 

Unverified costs are when you don’t pay your doctor’s fee before you claim from us. When this happens, your gap amount and out of pocket costs don’t count towards your thresholds.

https://www.servicesaustralia.gov.au/verified-and-unverified-costs?context=22001

Once you pay the doctor the balance and provide that receipt to Medicare, then the gap payment will be considered verified. Make sure you do that!

Registering as a Family or Couple

Why is this important? Let’s assume you are an Aged Pension couple. If you are not registered as a couple, you each, individually, have to reach that magic $717.90 out-of-pocket expenditure to receive the maximum increased rebates. That is, together you need to reach a total of $1,435.80 before you both get increased rebates. One of you may receive increased rebates before the other, if one of you has higher medical costs.

If you are registered as a couple, then you both contribute to a single threshold: $717.90.

Being on the same Medicare card does NOT mean you are registered as a couple or a family. I suspect this is a result of the transition from the old tax deduction method to the thresholds. You need to actually register.

If you’re part of a family or couple, you can register as a family to combine your costs. This means you’re more likely to reach the thresholds sooner. Even if all family members are on the same Medicare card, you’ll still need to register.

https://www.servicesaustralia.gov.au/how-to-register-for-medicare-safety-nets?context=22001

You can see if you are, perhaps, a family of five, especially if a family member has high medical costs, registering as a family for the Safety Net is a very sensible move. There is a BIG difference between reaching $2,249.80 per year for each of you, or for all of you combined.

Pharmaceutical Benefits Scheme Safety Net

Please note that the PBS Safety Net is a little more complex than the MBS. The thresholds for 2022 are $1,542.10 for General patients and $326.40 for Concessional patients. Note that if you have private scripts, these do not count towards the threshold. Private scripts are those where the patient doesn’t qualify for the Government Subsidy, but is still able to be prescribed the medication – this could, for example, be for “off-label” use. That link also has good “The Real Cost of Medicines” examples illustrating how it works.

The scheme requires pharmacists, on request by patients, to record the supply of PBS and RPBS items on prescription record forms. When a patient reaches the Safety Net threshold within a calendar year, they qualify to receive PBS or RPBS items at a cheaper price or free of charge for the rest of that year. Any applicable special patient contributions, brand premiums or therapeutic group premiums must still be met by the patient.

The Safety Net threshold is reached by accumulating eligible patient contributions for PBS prescriptions supplied through community pharmacies and private hospitals and for out-patient medication supplied by public hospitals.

Pharmaceutical benefits (including authority items) can only be counted towards the Safety Net threshold when prescribed and supplied according to PBS conditions. A medicine supplied by a pharmacist not approved to supply pharmaceutical benefits cannot count towards the Safety Net.

https://www.pbs.gov.au/info/healthpro/explanatory-notes/section1/Section_1_5_Explanatory_Notes

I strongly recommend if you or a family member has high medication costs, you ensure you are availing yourself of the benefits.

Summary

The confusion I have noticed among members of the general public is I suspect partly due to the transition from the tax deduction days. I don’t remember how well the “new system” was publicised at the time.

I recommend couples and families ensure they are registered because if someone suddenly does become unwell, the last thing anyone thinks of AT THAT TIME is registering with Medicare. With the risk of Long Covid currently, best to be prepared.

If you do have high pharmaceutical costs, please check with a pharmacist. I never hit the PBS Safety Net so I do not know nearly as much about how it works.

I Sat in My Car and I Cried

2021 was not a good year for me health-wise and it is time to come clean. In our chronic illness life, things don’t always go according to plan. Before I get into the details, I want to make VERY clear I do not in any way regret participating in the clinical trial I was on. It was wonderful, the people were wonderful, I was very well cared for. I am no longer on the trial, as you shall read, but that doesn’t mean the medication isn’t a great medication. I was just unfortunate. It happens. Hopefully I will have contributed to scientific knowledge in some small way.

So let’s get into it.

For whatever reason, during 2021 my medication stopped working for me. This could have been due to a variety of different reasons, we will never be able to prove the reason specifically for me so I am not going to discuss the various possibilities. It is not unknown: medications can just stop working for particular people. Of course, so much happened in my life DURING 2021, we did have a tendency to think I was flaring because of “stuff” happening. To just do a quick recap:

  • February: I suffered a fall, injured left ankle, right wrist (but saved my knee!!)
  • March: First Covid-19 vaccine (can cause flares in people like me)
  • April: Preparing for foot surgery (training work replacement etc, super busy)
  • May: Bi-lateral foot surgery followed by six weeks of inactivity
  • June: Second Covid-19 vaccine (can cause flares in people like me), plus I resigned from my old job
  • July: Started new job

So basically, lots of quite stressful events. That’s without considering the lockdowns which resulted in a lack of access to the gym and swimming and the various other concerns we all dealt with in 2021.

I did not want to accept that my medication wasn’t working (and that’s on me, it was my decision to persevere longer than I should have), for it had been wonderful. Best part was I did not suffer any side effects. However, at the end of 2021 it got to the point I had to accept the advice. A change of medication was needed. However, by now we were getting towards the holiday season and so appointment scheduling became an issue.

I’m leaving some detail out, but on New Year’s Day I almost took myself to an Emergency Department (ED). I didn’t for two reasons: A) If I went to my closest public hospital, I risked Covid-19 exposure, B) If I went to my local private hospital the ED fee would be money I really did not want to spend and I knew that in reality they’d likely manage the pain and tell me to call my rheumatologist on Tuesday. I could do that myself. So I soldiered on.

By January 4 it would have been easier to tell you what didn’t hurt, rather than what did. Even the entheses of my left hip were painful and THAT was scary as hips were one part of my body that had not previously been involved. What was painful?

  • Shoulders
  • Ankles
  • All Toes
  • Left hip
  • Elbows
  • Wrists
  • Most fingers
  • Hands
  • Knees (yes, even the operated knee felt swollen, but not painful, the right was painful)
  • Neck
  • TMJ (jaw joint)
  • Left Achilles Tendon
  • I also had some plantar fasciitis

That may not be a full list, but you get the picture. In the past, like when my shoulders had misbehaved earlier in 2021 (had ultrasound guided steroid shots in both shoulders), at least I could still walk, so I could still exercise, still move. Movement is not only my physical condition management strategy, it is also beneficial for my psychological health. Suddenly my lower body was so sore I couldn’t walk more than 500 metres. I couldn’t do upper body at the gym because my wrists wouldn’t allow me to lift dumbbells. I was struggling both physically and emotionally/psychologically.

I struggled to use a petrol pump. I couldn’t hold a coffee mug in one hand first thing in the morning. Turning taps off and on was painful. Getting dressed was a struggle. I needed a walking stick to get out of bed and move first thing in the morning. I could go on.

On January 9 I took myself to the hydrotherapy pool. It was a struggle to get into my bathers as my hands, wrists and shoulders were hurting. But I managed. Packed my hydrotherapy gear. Drove to the swim centre.

It was closed for repairs.

I walked back out to my car, sat in my car and cried. It seemed there was NOTHING I could do, not even hydrotherapy.

Of course, I’d been in touch with my medical team and January 11 I was officially taken off the old medication. I also took the rest of the week off work. Taking the rest of the week off work filled me with guilt. I love my job and when I’d accepted the offer I believed my psoriatic arthritis was under control. I didn’t feel fantastic at the time, BUT I was still only seven weeks post the foot surgery, so at the time it was thought the body seeing surgery as an injury was the cause of my flare state and I’d go back to my normal. So I was horrified to be taking time off.

I mention this for newbies to the chronic life and friends, family or colleagues trying to understand and be supportive. We, the patient, can feel guilty about stuff we have absolutely no control over. I can’t predict the future, yet I felt responsible for the fact I couldn’t have predicted the future! So then not only do we feel unwell, we feel guilty on top of it. Not a good place to be.

Bottom line, I’m on a new medication. This is my sixth medication since the start of 2015. So six medications in seven years. Many medications for many conditions, including mine, do not work overnight. Some take six to twelve weeks to “kick in”. In the meantime the patient takes a bridging medication to hopefully control symptoms at a manageable level, such as in my case Prednisolone. We taper OFF the Prednisolone as the new medication (hopefully) ramps up. I’d just ALMOST tapered off my last Prednisolone series, now I’m back on. So the patient doesn’t necessarily know for several weeks if the new medication is going to work for them. Will there be side effects? How much weight will be gained on the Prednisolone?

It can be natural for people to think along the lines of, “Well, OK, you are on a medication now, shouldn’t you be feeling better?”. No, it can take a while.

Many of these conditions are resolutely unpredictable, and THAT alone can be hard for friends, family and colleagues to understand. I get that – it is hard for ME as the patient to understand. I’m sure it is hard for the medical professionals to manage too. No crystal balls in this business. I wish there were. My rheumatologist painted me this lovely future scientific state where we will be able to personalise treatments, but we are not there yet – and probably won’t be in my lifetime. I also suspect such treatments may be rather expensive, but that is a WHOLE other discussion!

Today I actually managed to walk two walks totalling just over two kilometres. My left ankle is complaining a bit, but my right is OK. It is the furthest I’ve walked for weeks. I was back at work today. I’m on the improve.

All I can hope is the improvements continue. Pace UP again almost from scratch, don’t overdo stuff.

So if you or someone you know is struggling through a setback – please know you are not alone. It sucks. All I can say is keep persevering.

In closing, I would like to thank my manager and colleagues for their wonderful support. I am so grateful.

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.”

https://edition.cnn.com/2021/12/28/health/is-it-cold-flu-or-covid-wellness/index.html

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.

https://ourworldindata.org/world-population-growth

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.

https://www.theguardian.com/australia-news/2021/dec/30/the-ozsage-report-10-key-points-from-its-critique-of-australias-covid-response

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 advancecareplanning.org.au. 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.

https://www.publicadvocate.vic.gov.au/your-rights/your-healthcare/appointing-a-medical-treatment-decision-maker

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. 

https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-long-term-effects/art-20490351

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.

https://www.health.vic.gov.au/patient-care/do-i-meet-the-conditions-for-voluntary-assisted-dying

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.

https://www.legalaid.vic.gov.au/find-legal-answers/wills-and-estates/changing-will

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.

https://www.statetrustees.com.au/executor-services/learn-more-about-executor-services/what-happens-if-someone-dies-without-a-will?gclid=Cj0KCQiA5aWOBhDMARIsAIXLlkcSG2I6utkyILW0VXnAdvm9SddjCIGePIRVIdnyUOT8-ltbXsxSJdQaArewEALw_wcB

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.

https://www.hesta.com.au/members/your-superannuation/accessing-your-super/binding-death-benefit-nominations

Take care, stay safe.

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 two states of health: terminal and curable. I suggested we are not yet accepting the new third state of health: chronic.

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.

https://ourworldindata.org/world-population-growth

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

https://www.theguardian.com/society/2020/oct/30/americans-diabetes-insulin-cost

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.

https://abcnews.go.com/US/weeks-winning-million-lottery-man-dies-cancer/story?id=52765754

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 third health state, chronic, as NORMAL. As normal as the existing health states 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.

https://www.theguardian.com/australia-news/2021/oct/10/disability-pension-rules-leave-thousands-with-cancer-on-44-a-day

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.

https://limberation.com/2019/10/26/society-and-chronic-health-conditions/

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.

Flaring

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.

BBC .
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.

de-conditioning

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.