I have heard that financial advisors use the term "disposable income" to represent the income left over after taxes and other obligations have been met. Put simply it represents the income that an individual can spend according to their personal choice.
I was thinking about this concept in relation to the problems people with ME face with their energy budgets. By "energy" I mean physical energy - the type that can be used to climb stairs for example.
So, I started to think about the concept of "disposable energy", and how it might represent the amount of energy that an ME sufferer has available to spend - in a manner of their own choosing. That is, after all other energy obligations have been met.
Exploring these two ideas, shows some similarities - both budgets vary enormously throughout the population, and life is undoubtedly easiest for those who have access to the greatest incomes on both accounts.
Surprisingly the upper limits of monetary wealth in today's world would seem to have almost no discernible limit. Considering physical energy is a bit easier, because even the most healthy and fit amongst us, will still have a an absolute limit to the amount of energy that we can expend daily. That ceiling is determined by our biology.
Normal healthy folk have sufficient energy to attend school or work, and to have a social life on top of this. They can also exercise to improve their physical fitness. Potentially, they can build up both stamina and strength and so take on challenges such as marathons or mountain ascents.
Of course, there is a limit to what this training can achieve. Beyond that limit,
"over-training syndrome" (1) sets in and the body ceases to get fitter. At this point, the body starts to break down existing tissues in order to supply the energy demands of the excess physical activity. This sort of training cannot be sustained.
In the athletic world it is acknowledged that training limits are personal. Successful athletes, at the top of their sport, have a fortuitous combination of ideal biology and the mental determination to train to their full potential. Those of us less physically and mentally fortunate will have lower physical limits - that's just life.
However people with ME can develop a whole new set of restrictions to their physical potential. No matter what their previous physical prowess, when this illness hits, everything changes. The rule book gets totally re-written, and the person with ME is left reeling from the implications of their new diminished energy budget.
Suddenly balancing the books takes on a whole new importance. Previously a unit or two of energy could be frivolously spent without long-term implications, but now everything must be thought through. It is rather like taking a drastic pay cut, or indeed a succession of paycuts as often ME is progressive.
This slashing of one's energy budget is not easy to comprehend when it happens. In just the same way that the well-to-do find it hard to understand the struggles of those financially less well off, so the healthy amongst us have difficulty comprehending the restrictions of ME.
Healthy friends sometimes fall back on the old mantras that society has taught them about "diet, fresh air and regular exercise" as being the way to improve fitness and stamina. For the person with ME this helps not one bit, because not only does the ability to produce energy for physical activities decline with ME onset, but also the ability to improve functioning through exercise totally disappears.
ME sufferers are therefore left with no other option than to curtail their physical activities to stay below this new biological limit imposed by the disease. Not doing so results in increasing harm. Perhaps the mechanism is similar to "over-training" syndrome in athletes? Who knows? Perhaps one day research might give us the answers, but until then ME sufferers need to make drastic lifestyle changes.
Returning now to the idea of "disposable energy", and its sister concept of "disposable income", I find that some analogies work well.
First, both financially, and energetically, there must be a basic expenditure that is required on a regular basis simply to sustain life. Living below these levels leads to long term problems. I won't attempt to put a monetary value on living expenditure, but for energy this represents the amount of energy required to sustain the body in its normal healthy state.
So, let's say this basic required expenditure is 100 units daily. For my discussion I'm also going to assume a normal average income of 300 units per day. So in my scenario that leaves 200 units that are regarded as "disposable". These fortunate (imaginary) individuals have some considerable degree of financial and energetic flexibility. On top of simply surviving, these healthy folk can live life to the full - perhaps sometimes needing to take a rest, but mostly living a life curtailed only by the type of restrictions that society sees as normal.
However when either finances or health become curtailed, a massive impact on life style results. Curtailing both simultaneously is beyond devastating, and for many ME sufferers this is exactly what happens. Though that probably needs another whole essay to itself.
So looking now at "disposable energy", the image below shows what happens when my imaginary 300 unit budget gets slashed to half its previous level. Notice that although the over all "income" has dropped to 50% of previous, the "disposable" income is now only 25% of what it had previously been. So 75% of those "personal choice" things need to get dropped!
ME sufferers, of course, don't want to let go of everything they enjoy, so sometimes they will "splash out" and use some of their limited disposable energy on a special event. As I have explained in earlier posts,
the ability to do something once, does not mean it can be done often (2). Also the resulting "debt" created by an event may potentially have
the effect of lowering physical abilities long-term (3). Living within a tight energy budget is no holiday.
Worse, if ME becomes progressive then increasing restrictions leave less and less flexibility, until finally even living itself takes more resources than are available. At this point the person starts running into a sort of debt. Basic body maintenance is sacrificed in order to keep going, and the person with severe ME may become so energy restricted that they are unable to manage even the simplest of self-care tasks.
Once severe illness becomes apparent, people with ME need to depend more and more on others to help them, in order to allow the body to expend as little energy as possible. The very severest ME patients may even need food to be predigested and fed to them via a tube. Disposable energy at this stage has become non-existent. Everything is simply about trying to hang on to life, in the hope that a cure is around the corner.
So... Why are medical authorities not more concerned about treating this disease? Why do they seem content to allocate token amounts funding towards its understanding?
Surely major health organisations around the world should have, at their disposal, sufficient funds for just this sort of health crisis?
Yet still we wait.
Links:
1. Over Training Syndrome:
https://www.verywell.com/overtraining-syndrome-and-athletes-3119386
2. Well enough to drink coffee:
http://sallyjustme.blogspot.co.uk/2015/05/well-enough.html
3 Play Up & Lay Up not Boom & Bust:
http://sallyjustme.blogspot.co.uk/2014/09/play-up-and-lay-up.html
I went missing overnight. Faded out of a life I recognised and into another I did not. I still do not. You learn, as you go along, how to be fierce enough to survive this with who you are intact. It will take everything, it will strip you to the bones and still keep raging, with no mercy in its onslaught, and you are powerless in the face of its enormity, but then you realise one day that you get to choose. You get to choose one last thing; whether or not the small spark of light that belongs to you, and you alone, is snuffed out with it. You learn how to hold on to whatever it is you believe in enough, to still keep who you are alive instead of just your body.
