It’s funny how time changes perception, warps targets, redefines dreams. Time has played many a trick with me. There was the year I met my first consultant, who by his own admission wasn’t an ME expert, and yet told me I’d be running marathons within one year of illness!
Being a newbie to ME, I believed him.
That was until I met my second consultant, the one who knew something of this illness. He lambasted me for daring to dream. Said running was years away from me. As for marathons, he doubted them.
And then there was my third consultant. The one who overlooked my GET program, the one whose head I baffled, when I returned to her office every four month period, worse than our previous meeting. But this consultant was the one who changed my life forever. For the better.
She reminded me of that word, hope. Told me no one knew the future and reminded me it was okay to dream, to keep the idea of a return to running alive.
Ironically, while under her care and taking up meditation and mindfulness, two tools she added to my toolbox, I stopped living in the future, began living in the now and realised today is the only day that matters.
As for running? That no longer plays centre stage in my dreams. If it returns to my life in the future, great, if not, then I’m fine with that too. But if in future years, I return to near full health, or full health, the first thing I will do, will not be to run.
The first thing I will do, is go for a walk with my husband. Since doing GET, I can no longer walk more than a few hundred metres without having to stop and when I say walk, I mean slowly plod – my legs no longer have the energy to lift themselves without immense effort – . This dream walk would take place somewhere outside Galway, outside Ireland, it would be a holiday. Something I’ve deprived my husband of these past few years, along with anniversaries and birthdays.
We tried going to the cinema during my first year of illness, it was hell. I don’t have the concentration to watch a programme on TV, never mind follow a film.
As for my husband, he has become his family’s plus one at family events. I’ve missed weddings, christenings, birthdays. We no longer discuss my participation at such outings, they are simply, out.
The one night we enjoyed out together, was my book launch last September. And even that was a short, planned outing. In all, I was there for 2.5 hours. ME dictating every detail of the evening.
My husband set up the room before the public arrived at 7.30pm, I organised friends to sell my books for me, allowing me to sit, greet and sign books. After which, I had a break, as a local writer read from my book, giving his interpretations of my poems. I read two poems that night, far less than I should have and when the last guest left the building at 9pm, I too left. Leaving my parents celebrating my night, alone. My body unable to stay with them for one drink, my husband driving me home to my awaiting assortment of tricks. Heat pack, hot water bottle, arm bandage support, compression socks. My frazzled brain unable to string a sentence together.
Luxury would have erased the suffering I endured the week after this outing. Luxury would be getting up tomorrow and doing exactly as I please, it wouldn’t be waking from a 12 to 14 hour sleep feeling as if I haven’t slept in a year, it wouldn’t be a carefully planned day of resting periods between bouts of “activities” i.e. meal making, dish washing and if I’m super lucky, writing for one hour or sweeping a floor.
Until such luxurious hours clock up, I’ll continue to pace, to rest, to live within my limits for today.
Knowing severe ME patients don’t have the luxury of being able to cook their own meals or leave their home for short, planned periods of time, I’m grateful for my today, grateful for all I can do.