Having ME is a challenge. There’s no point pretending losing a past, in order to plod my way toward my future is easy. But what path in life is?!
My past was filled with running, horse riding, yoga, a full time job, frenzied home cleaning, dinner dates, movie dates, walks on a whim, shopping on a whim, driving around the country chasing down the next running race. It was an active list, one which vanished in late December 2011.
However, being a stubborn twig, I refuse to let ME beat me. I refuse to focus on all I’ve lost and live in the now, I live for today. A life lesson, illness has taught me. After all, the past is in the past and whatever the future brings, will be.
Plus, I refuse to fall down any well of self pity when there are 10,000 patients suffering varying severities of this illness here in Ireland, 25% of whom are bedridden. Bedridden patients who would love to be able to stand in my shoes.
Unlike my past, my present life is spent pacing, resting, sleeping, living in the now, meditating, grasping a good body day and enjoying it, riding out the bad body days, focusing on the better ones to come. The tweet of a bird, the sight of a hare, the sound of rustling leaves as summer shakes free are my new excitements. My new normal.
As bizarre as it may seem I don’t remember my past. It’s just as my grand-aunt Daisy once said to me as a teenager “you know Marie, it’s all a dream. One day you too will sit back and understand what I mean.” Of course as a teenager I smiled politely at my elderly aunt, wiping her words from my mind. Until now.
It is all a dream, if she were alive today I’d yell back at her “I get it”, “I understand what you meant two decades ago.” Although, I’m sure she’d be surprised to hear that at the age of 33, I think as she did in her eighties.
That’s what ME does, it robs patients lives, it stuffs all we were once able to do into the bin of dreams, sealing it tightly, so we forget what our past felt like. I forget what it’s like to have energy. I don’t remember what it is like to be able to just get up from bed and do as I please. There are days I wake and having brushed my teeth, I’m ready to get back into bed, my days energy spent.
I couldn’t walk a mile without suffering payback for days as a result, never mind running that distance. I don’t have the strength to sit on a horse, never mind canter him/her over a set of jumps. My brain lacks the energy to focus for long periods of time, I’d be a liability in any office. (Actually, I was for a number of months in 2012 before throwing my hands in the air in defeat.)
Getting up in the mornings, making breakfast, resting, making lunch, resting, making dinner, resting, is my new normal. I pace myself without thinking. Doing something as simple as washing a load of clothes is a huge chore. Sometimes the clothes are left in the machine for hours after they’re washed, my body needing more rest, before emptying the machine and sorting through them.
I love it when my husband offers to get something needed upstairs, the offer, the knowing I don’t have to climb the stairs as great as someone telling me I’d won a cash prize.
Luckily, one thing has survived from my past and walks the path beside me, my family and friends. I’m grateful to every one of them, each lending their support in differing ways. A text, an e-mail, a visit, a hug, simple gestures of kindness. Huge rewards for me.
I’m lucky too because I can function within my home, I can care for myself. Although, when a crash occurs, my husband has to do a lot more for me. Crashes render me useless for a week or ten days depending on their severity. Demons sent to test me!
However, I don’t bash ME on the head, I’ve accepted her, I’ve accepted my limitations and work within them, while my GP nods her head encouragingly from the side lines. After all, that’s all she can do.
There are no drugs to cure me, no doctor, no specialist, no scientist can offer me a wonder cure. It’s up to me to do the best for me. That’s where being a stubborn twig comes in handy.
But think for a moment, those of you in good health, would you cope with your past, your present, being pulled from your feet? Would you cope with sitting opposite doctors who tell you there is nothing they can do to make you better? Would you accept this? How would you react to those who say ME is a psychotic illness? How would you deal with not knowing when, or if, you will ever get better? What would you do if your child got ME? Children get ME too.
That’s why next Monday is May 12th International ME Awareness Day. It’s a chance for everyone to stop and listen and think. An opportunity to ask… what is this illness and why is there no cure?
*This post has been published in this weeks edition of the Galway Independent:
Approximately 10,000 patients in Ireland suffer from Myalgic Encephalomyelitis. A debilitating illness, which is most often misunderstood. That is why awareness is key and why next Monday, May 12th is International ME Awareness Day. Thank you to all who have read, shared, talked and commented. Awareness Warriors.
**At the Irish ME/CFS Associations request, leading international ME Expert, Dr Charles Shepherd, will give three talks on ME over the coming weekend. On Friday, May 9: Limerick Strand Hotel, Ennis Road, Limerick City. 12pm (noon). Saturday, May 10: Connacht Hotel, Dublin Road, Renmore, Galway City. 2pm. Sunday, May 11: Carlton Hotel Dublin Airport, Old Airport Road, Cloghran (Santry), Dublin Airport, Co. Dublin. 3 pm, admission €5 on the door.