I have read many descriptions and metaphors to describe what it’s like to live with an energy sapping chronic illness, but I find that none adequately describes what it’s like for me, living with ME/CFS. I have a metaphor that I think fits me and my ME which I wrote about in my epic post of doom in January. I’ve cheated a bit, and just adapted a portion of that post here, but I give you
My Energy Bucks Model of ME
The most popular and meme-able of these explanations of energy and chronic illness is ‘Spoon theory‘ which uses spoons as a metaphor for an arbitrary unit of energy. Activities use up spoons – the harder the activity, the more spoons used. For a healthy person, spoons can be washed/replaced with rest or food. For the chronically ill, the number of spoons we have each day is fixed and often unpredictable. Our spoons can’t be replaced during the day.
While spoon theory works well for many conditions, it doesn’t allow for some of the peculiarities of ME/CFS, such as Post Exertional Malaise (PEM), which is an important and defining symptom of ME.
I’ve played with various analogies, like faulty batteries and chargers, and time, but I think this is the simplest explanation and most accurate to my experience that I have seen so far.
Just like in spoon theory, activities use up energetic resources. Do a thing, pay from your resource pool – in this case you pay in Energy Bucks.
Energy Bucks/energy money/energy dollars etc can be earned and spent, saved and drawn down, much like financial currency money. We earn energy money through resting, eating, and engaging in certain activities that free up saved resources (e.g. exercise burning fat and releasing endorphines). A pay cycle is usually no longer than a day, so your account refreshes overnight or even sooner (although sometime we wake up unrefeshed, which suggests a problem with the pay run of the preceding night).
For ease of explanation, I’m going to use E$1 = 10 calories. I don’t know if it is quite that simple in reality, as there are many physiological factors that may be affecting the actual numbers produced and used in ME, so I just don’t know what the real exchange rate might be.
Being healthy is much like having a job with an income sufficient to pay the bills and put some money aside for later. If you need more Energy Bucks for an activity than your daily income allows, you can draw on savings (fat reserves), or earn a little extra by working a cash job, or doing some overtime hours (e.g. eating a snack, resting, or having a nap).
In my mind, having ME/CFS is like living on a limited and fixed income, or like being on a social welfare benefit, or living from the interest paid on an investment. The income may vary over the years, increasing slightly during remissions, dropping during relapses, but it’s always pretty fixed from day to day (you may not agree that it’s always the same amount, but bear with me because I explain why below).
When I was healthy, I was ‘earning’ energy at a high enough rate that I always had more than enough ‘money’ (energetic resources) and could store some away for emergencies. Let’s say it’s E$300/day because then it relates to roughly the caloric intake and expenditure for someone of my size, age and previous activity levels. I had excellent fat and muscle mass portfolios that I could liquidate if earnings from food were scarce (intentionally or not) or with exercise. If I needed to spend more than I had earned I could draw on these (burning fat, or breaking down muscle), get a low interest personal loan, or dip into my energy overdraft for the excess, then pay it all off over the next couple of days/paydays.
With ME, my take home energy salary dropped considerably (my mitochondria aren’t producing energy at the normal rate – so even though my food input is the same or higher, the output is significantly reduced), so I no longer generate enough energy to live on, let alone keep up my old lifestyle. I don’t know exactly how much energy I actually make/earn, but let’s say I get E$170/day in the hand (which is a generous estimate of what I currently spend, and slightly above my Basal Metabolic Rate of E$130/1300 calories needed just to keep me alive, but well below the E$300 of my past). It’s still enough for some activity, but not much more than a completely sedentary lifestyle. I can cut back on my outgoings by not exercising, by using my wheelchair and elevators when I’m out and about, parking closer to my destination, or not going out/doing the activity in the first place. I can make a few changes to my diet or lifestyle to improve the efficiency of my expenditure and get more bang for my buck, as it were. With these lifestyle changes, I may be able to manage day to day and cope with the basics but it makes me vulnerable to any small change in circumstances.
Energy loans and debt collectors
What if I have to visit the doctor or take the car for a warrant of fitness? What if a friend comes to town and wants to catch up for coffee, or I receive emotionally significant news? Those activities weren’t within my normal daily energy budget. If I want/need to do them, and I can’t budget in advance to pay for them, and can’t avoid or defer them, I may have to pull out the energy credit card and pay for it that way.
While I still have my fat portfolio, my account has been frozen or locked in some way so I can no longer draw on it (I can’t add to it either, so there’s that small upside – this may be different for other people with ME). This also means I have no security to borrow against and no longer have access to the low interest rate personal loans and overdrafts of my healthier life. With my low energy income and lack of liquidity, there are only limited ‘energy loans’ available, so I have to go to an energy finance company (the energy equivalent of GE Money) or one if those dodgy payday loan shops.
When it comes to paying back that debt, the interest is high. I may have borrowed very little, say E$40 to meet that friend (E$20 for 2 hours of conversation including 15 minutes if laughter, and E$20 for the physical and processing effort of dressing, then going to a cafe and getting home again), but there will be interest to pay from day 1. If I’m able to rearrange things so I have some spare energy to pay it back quickly, my budget only has E$40/day above the bare minimum rent I need to pay just to keep my body alive. Maybe I stay in bed for a few days and keep my movement and brain activity to a minimum to save a whopping E$20/day, paying back E$50 over 3 days. Or I could put off doing any housework for a week or so and save E$4/day, the interest costs mean I have to pay back E$60. If it had been in my usual budget, a coffee with a friend may be about as much energy as hanging out a load of washing and bringing it back in, or could be recouped in the slice of cake (remembering that my mitochondria don’t fully utilise the cake any more, so the output is lower), but on the Energy Credit Card with high interest payments mean going out for a coffee can cost sick me as much as healthy me paid for something like 2 hours at the gym or hiking for a day.
Then you have the big ticket events, like weddings or recovering from surgery or an illness, or mourning the death of a loved one. The more you borrow, the harder it is and the longer it takes to pay it back, and the higher the repayments, and if you try to default on it, they send ‘heavies’ to cause you literal physical pain or other symptoms, forcing you to reduce activities and pay them back ASAP.
Energy drinks and similar products are especially high interest and require almost immediate repayment. These are available as a worst-case scenario, last resort band-aid for times when the need for an unusually high energy output cannot be avoided or otherwise managed but they are not a solution for more than a day or two and can only be used very rarely. They always come with a major crash with a significant intensification of symptoms.
Sometimes my card gets declined
The hardest thing to deal with is finding that your account has less than you anticipated because the ‘energy bank’ has taken random fees or you dropped E$20 of energy somewhere, so even though you woke up feeling like you had enough to pay the bills today, you’re actually quite a bit short.
I’m dealing with some bounced cheques myself this last week or so. I feel fine most of the time and may even feel refreshed when I wake up, but the smallest exertion wipes out my daily allocation of Energy Bucks, and I crash. It may be that a virus has fraudulently charged my energy bank account, or picked my pocket, or my salary may have dropped a little for some reason and this is my new base line (I hope not). Maybe my sleep just isn’t paying me as much as it promised it had. Whatever the cause, my books aren’t balancing. I think I’ve mostly avoided the loan sharks for now, but I’m not entirely sure either. So I’m keeping my spending low and hoping it sorts itself out soon.
Taking on too much debt
So what will happen if I push myself too hard for too long, as I did during my ‘remissions’, or if I were to follow the UK and Australian guidelines that still prescribe the long disproven Graded Exercise Therapy (GET)? The same thing that happens if you keep getting new credit cards and loans without paying the old debt first… the debt builds up until even the interest and minimum repayments are so high that you struggle to pay them. Your payments might keep up with the interest, but the principal remains untouched. Eventually the cost cutbacks required to keep up with these debts may mean having to eat into that E$130/day of body-rent. When that happens we stop being able to use our brain to process sensory input – it becomes painful and overwhelming. You stop being able to think or move at all. You may even become limited in your ability to digest food (which further restricts your Energy Finances). That fat portfolio may finally be able to be released on hardship grounds (hmmm, maybe it’s a superannuation account), but that may be too little to fully cover the costs.
Usually we realise too late the consequences of taking on this huge debt, and end up struggling for years to keep up or catch up. Sadly, many people with ME/CFS chose to go into ‘voluntary liquidation’, as the ‘banks’ never foreclose on us, so it seems to be the only way to break their debt cycle… (The good news is ME/CFS doesn’t kill you. That’s also the bad news).
I think this is a pretty good metaphor for ME purposes. It can take Post Exertional Malaise into account, which doesn’t work so well with spoon theory, and explains why we can get so good at living within our energy means that we don’t realise that a remission that gives us an extra E$50/day isn’t actually “back to normal”, as much as we may feel rich by comparison. What do you think of this model?