Three weeks since Lemtrada and I’m still largely house bound. I’m deeply frustrated by my current lethargies and am not dealing with this relative immobility too brilliantly.
When asked how I am, I complain about an ongoing issue with my eyesight; and a debilitating vertigo that seems to strike 3 or 4 times day, almost dragging me to the floor; and I mention an ongoing exhaustion, which I can’t seem to shake. But what I’m struggling to cope with the most is inside my head. Inside I’m so angry at these lost days; these opportunities at life which are passing me by.
I can’t help but wonder whether its the same for everyone- or whether, for some reason, I’m particularly ill-suited to these changes; or just stubbornly unable to accept them.
My two boys wrestle on the floor. Again.
They’re incessant bundles of frenetic energy, and don’t seem to do much else.
There’s a 4 year gap between them – a space that the younger one furiously tries to bridge (on determined repeat).
Although they’ve been brought up the same way, they are undeniably different boys – special, of course, in their own ways 🙂 Who knows which brief moments in time have most formed their personalities; and which strands of their DNA pushed them one way rather than another? Whatever “they are”, of course, they come (at least, in part!) from me.
From a young age I, too, have always had a restlessness; and what is becoming all to clear is that, however I was born – whatever it is that I am now – I’m certainly not well-equipped for being a patient. I feel that there is some poorly understood process within me, something that compels me to get up at 4am on a rainy February morning to cycle 200km, that sits particularly poorly with being largely housebound for (what is now) 22 consecutive days.
In fact, it’s driving me mad.
What gives me the compulsion to get up at 4am and cycle 200km? It’s a worry that I might miss out. I hate any feeling of life passing me by. And, at the moment, it feels as though it’s slipping through my fingers at the rate of knots.
Reading more about MS – and the possible behavioural traits associated with it – a “nervous energy” is described as being particularly typical. I don’t like the term “nervous energy”; it feels negative and implies some sort of anxiety, unease or dissatisfaction, none of which I (want to) relate to; and maybe I’m extrapolating my own paranoid sensitivities here, but it also seems to imply a certain degree of self-centredness: whirring on my own hamster-wheel at a different pace to others. I don’t like that thought.
But, although I might not like it, in parts, I confess, the cap does seem to fit.
And, as I get older, I do wonder if it’s getting worse.
After I left school, my back-packing days (which were seminal times for me) certainly didn’t bring me to a calmer acceptance of my place in world. Instead, the most significant perspective I seemed to glean was of the temporal fragility of it all: how I was to be forever fated to miss so much more than I could ever see. This panic of mortality only enhanced my desire to see and do as much as possible, as quickly as possible, before it all turned to dust.
It feels as though I now need to learn some new techniques for life because my philosophies and life-skills that have been slowly developed don’t seem to be so appropriate anymore. Maybe I have to consciously unravel a bit of what I am, and teach myself to change.
I don’t want Valium to the be the answer to it all.