A series of minute but significant decisions; a constant evaluation of the impact of the different choices; an incessant internal dialogue and negotiation of the easiest ways to accomplish the daily basics.
It starts as I wake, even before I open my eyes. Can I move without the excruciating pain of The Hug which has set in overnight? Is it morning, or has the pain interrupted my night of slumber early (sometimes as early as 1am) to force me awake and out of bed to try to catch my breath? Can I roll over to check the clock, or should I hold my breath to avoid gasping in agony and risk waking my sleeping husband beside me?
Once the initial morning shufflings are completed, and my legs are dropped to the bedroom floor, there is the moment of anticipation as I watch my feet make contact with the carpet. What will I be able to feel today? Can I sense the soles of my feet? (Rarely, but very occasionally I can feel both. Mostly it is just the left that treats me to the sensation of carpet on skin.) Will there be a burning or a tingling today in place of the (once expected, now assumed absent) feeling of fluffy flooring? As I begin to rise up from the bed, I become aware of the fear that my legs will choose today to stop bearing my weight. I ease myself downwards and heave a sigh of relief as I find myself standing, self-supporting. I take a moment to give thanks.
As the day crawls into action, the weighing up of a series of tiny options ensues; preparation of breakfast involves an almost instinctive calculation of how to complete the minimum amount of steps required to negotiate my way around, from cupboard to cupboard, fridge to sink. I never leave a room without a last-minute scan around to see what I can take with me, to reduce the need for extra return journeys. Going upstairs will only happen when it is absolutely necessary, and the morning’s activities are planned carefully to ensure this is only once or twice during the morning.
Which shoes? Flat shoes are almost guaranteed these days, but each pair has its advantages (stability) and disadvantages (exacerbates numbness, or rubs a little on one side, to which I am oblivious until there is an angry red mark left at the end of a day). My favourite pair of casual boots – a mock sheepskin pair – allow damp from the autumn dew to seep into my socks, and I remain blissfully unaware until I look down and spot the dark patches.
The use of the flowery walking stick – necessary when the fatigue causes a wobble too many, or the right leg is not reassuring me of its ability or willingness to support my weight without assistance – is balanced (pardon the pun!) against the downsides of being almost single-handed and therefore possibly having to make twice as many journeys between places. Can I manage a box of books in one hand between classrooms? Will I be able to move between the staffroom and the office more times than usual in order to carry the lunch in one trip and then accompanying glass of water in the second? Do I want to interrupt my colleagues’ conversation to, once again, beg a favour to move around the essential items for my lesson next door?
All of these possibilities swirl endlessly around in my head, often almost imperceptible, but nevertheless requiring mental energy in order to process the myriad thoughts and alternatives.
This, in addition to the calculations of how to negotiate difficult walking terrains; how to minimise and juggle tasks that increase fatigue to maximise the use of physical, emotional and mental energy.
None of this is stated as a complaint. There are also enormous positives to living my life, and I try to document as many of these as possible.
But I do think sometimes, it’s no wonder those of us with MS get so tired. Our brains are working on overdrive for most of our waking (and barely waking) hours. Our bodies work harder because of the physical manifestations of this condition, but I have only just started to realise why many people with MS are so genuinely and utterly fatigued.
I’m going to take a nap… I have earned it!