Credit Card Explanation of Post Exertional Malaise
Energy = Money
One common analogy used to explain fatigue and energy limiting chronic illnesses is to think of energy as money. Everything you do has a cost or benefit.
A shower might cost $10, going for jog $40, going to the bathroom $1, watching a youtube video $0.10 and so on.
Some activities earn money, your sleep each night being the main one. But a nap could gain you $5, or a mediation session $2. Some activities like yoga might earn money for a healthy person and cost money for a sick person.
A healthy person might wake up each day with $1000. They can do whatever they want each day without thinking about money. Someone with chronic fatigue or mild ME might only wake up to $70. Someone with moderate ME $40. Someone with severe ME might only have $15.
Note that what activities someone can do will always be less than their daily budget. For example, the person with moderate ME could not actually go for a jog with their $40 because they would have no money left for essentials like eating and using the toilet.
----
Pacing & Budgeting
In this way, living with fatigue is like living in poverty. There is never enough energy to go around. You cannot afford everything you need and so you must carefully budget your expenses.
In addition to activities, symptoms can cost money too. For example, got a migraine, that's going to cost $10 to deal with all day. So sometimes you might wake up with loads of symptoms and find that most of your budget is already spent.
For most people with chronic fatigue if you run out of money, that's it. You're broke. In real world terms, you spend the rest of the day in bed resting.
But for people with ME the story is more complicated...
----
Post Exertional Malaise & Credit Card Debt
You can think of people with ME as having a really predatory lender. Whereas most people have a bank account with a debit card, people with ME only have a very high interest credit card. This card will let them overdraw their account by large amounts and if they overdraw their account even a little they will get hit with massive fees and high interest payments that can take weeks to pay off.
Because people with ME have this credit card instead of a debit card, they are able to spend money they don't have. They can be fiscally irresponsible. But if they go into debt, the bank will come after them with threatening calls, letters, or goons to beat them up. They will also have less money to spend every single day after going into debt until they pay it off. Which makes it even harder to avoid overdrawing their card.
In this metaphorical universe, only people with ME have credit cards. So no one else experiences credit card debt.
In reality, this credit card debt is called post exertional malaise and symptoms include: light and noise sensitivity, headache, sore throat, swollen lymph nodes, severe muscle weakness, fever, dysautonomia, muscle spasm, cognitive dysfunction, periodic paralysis and more.
----
The Consequences Of Debt
People with ME don't just have a bad credit card, they are also still energy poor. Therefore they are very unlikely to avoid going into debt. In the case of the severe ME patient, it may be that a doctor's appointment cost $20 and they only have $15 a day to spend. Thus debt is unavoidable.
In less severe energy poverty, people with ME have both more freedom because of their credit card and more risk. They are able to use it to splurge on things like wedding and doctors appointments and deal with the debt collectors after the fact.
But just like in real life, compounding interest and the increased financial pressure of debt increases poverty and vice versa. Thus while access to debt might seem helpful, it is in fact very dangerous.
----
Credit Score & Baseline
You can think of the severity of your ME as your credit score. People with more severe ME have a worse credit score. This means two things:
They have a lower credit limit. This means they have less money to spend each day before they overdraw their card.
They have higher interest / more predatory lenders. This means they have to pay more in interest when they overdraw their card and that their bank is more aggressive about collecting the money.
So for example, someone with mild ME might have a $50 credit limit and 50% interest. Say they spend $70 one day accidentally. The next day they wake up with only $40 after the $10 interest has been taken out of their account. They also owe the bank $20 and will keep waking up to only $40 until they pay back the additional $20.
-----
Declaring Bankruptcy & Permanent Decline
Someone with severe ME might have a $20 credit limit and 100% interest. Say they also overdraw by $20 and spend $40 in 1 day. The next day they wake up to $0 and owe the bank $20. They have no way to pay it back.
Instead, they will have to file for bankruptcy and wreck their credit score further. So maybe now they are approved for only $15 a day with 125% interest rate. The process of bankruptcy is painful and long.
As you can see, as your credit score (baseline) gets worse it becomes harder and harder to avoid bankruptcy. This dangerous cycle is why it is so important for people with ME to avoid going into debt in the first place.
----
Building Credit
Just as how failing to budget will lead to declaring bankruptcy and wrecking your credit score making future budgeting even harder, the opposite also applies.
You can build up your credit score by not maxing out your credit limit (aka not spending all your energy) and by paying off debt quickly when you do incur it. By doing so, you may be able to raise the limit on your credit card (get more energy) and get a better interest rate (less severe PEM).
However, when it comes to both raising and lowering your credit score, the bank ultimately decides what happens. You can only do your best to be fiscally responsible and hope they reward you accordingly.
Additionally, sometimes circumstances outside your control like comorbid illnesses or an overly punitive bank will put you into debt regardless of how responsible you are.
----
Unique Form Of Money Management
In our metaphor, only pwME have credit cards. This represents how only pwME experience post exertional malaise.
Just like how PEM is confusing even to people with fatigue, the complex system of credit card debt, credit scores, and interest payments that pwME face in our metaphor is something unfamiliar to people regardless of their experience with energy poverty.
For people with a debit card, the worst they can do is empty their accounts. They cannot go into debt. Nor does emptying have permanent consequences. So they do not understand why pwME are so afraid of overdrawing. They misunderstand the difference between going broke and going bankrupt.
Likewise, while lots of people with debit cards, especially those in poverty, might carefully save up some money for a special event, or drain their emergency fund for a doctor's appointment, this is very different from pwME overdrawing their high interest credit cards.
-----
What You Can Pay For Is Not What You Can Afford
The most important lesson to takeaway from this metaphor is that if you have a debit card, regardless of how much money is on it, what you can pay for is what you can afford.
This is not true for people with ME.
Because people with ME pay our energy bills on credit cards not debit cards what we can pay for is much more than what we can afford. There is a limit to both, but in order to live within our means, we need to only buy things we can afford without going into debt. If we do not, both what we can afford and what we can pay for will decrease and we will become even worse off.
----
The defining symptom of Myalgic Encephalomyelitis is PostExertionalMalaise or PEM.
More descriptively known as Post Exertional Neuroimmune Exhaustion or PENE, the consequences of overexertion for pwME include:
-Sore throat
-Severe fatigue
-Tachycardia
-Dysautonomia & Orthostatic Intolerance
-Sensory sensitivity
-Paralysis
-Seizures
-Migraines / Headaches
-Fever
-Muscle Spasm
-Muscle Pain
-Joint Pain
-Nausea
-Mood swings
-Hyper or Hyposomnia
But most importantly: RISK OF PERMANENTLY WORSENED DISABILITY.
ME aka Chronic Fatigue Syndrome, CFS, CFIDS, MECFS etc. is NOT the same thing as just having chronic fatigue.
As @agy.lena said so well recently:
"YES I KNOW people with other chronic conditions get exhausted from activities and have bad days. BUUUUUT!!! Unlike in ME/CFS, their very disease process doesn't get worse as a result of exertion. You don't lose more myelin for example. In M.E. your actual pathology progresses! Sometimes permanently!!!! This is how so many of us deteriorated permanently in the first place! Either through trying to keep going or through ill advised and extremely dangerous graded exercise therapy.
Imagine every time you pushed yourself though your disabling fatigue and other symptoms, you would grow more cancer cells, your cancer would metastasize, your IBD would flare so much, you risk losing bowel function entirely, your MS would flare so much, you lose more myelin every time you push through, you risk becoming PERMANENTLY more disabled. This is how ME/CFS works. You cannot live in spite of, you cannot "stay positive" and graciously keep going without complaint EXACTLY BECAUSE OF this! With EVERYTHING you do, physically, cognitively or emotionally, you risk becoming MORE DISABLED!"
Overexertion in ME can be as small as showering. For severe ME, it can be as small as rolling over.
The energy debt trap of PEM is dangerous quicksand. You must learn to recognize it before it is too late. Your friends and family must learn to help you now, or the burden of the disease will only grow.
