Trying to communicate what it is like to have ME without moaning is a challenge. Often mistaken for a psychological illness, I’ve lost count of the number of times people tell me that I will feel better when the better weather comes! Sufferers will know that this has no bearing on their condition, but as it’s something people seem to relate it to I’ve decided to try and explain it terms of living through changing seasons
Myalgic Encephalomyelitis (M.E) ‘Myalgic’ means muscle aches or pains. ‘Encephalomyelitis’ means inflammation of the brain and spinal cord.
Having enjoyed a good 15 years of good health and fitness since my first M.E diagnosis, I’m shocked that I’m currently 5 months into a relapse. Like a delicate blossom on a tree, I’m hoping recovery is only a season away…
Once again the crown on the majestic tree is stoking it’s Autumnal blaze. I know nothing can now stop the inevitable fall. The contrast is stark. The contrast is bare…
Once again, I long to get through the day without my bed
But my body and senses are screaming “enough!”
Once again, I long to make my day productive
But my brain won’t organise my thoughts
Once again, I long to be with people
But the noise numbs my head and sends it in a spin
Once again, I long to join in quick banter
But the words are out of reach
Once again, I long to run up the stairs
But my legs feel encased in lead
Once again, I long to share hospitality
But the uncertainty of health often brings disappointment
Once again, I long to simply stand and chat
But my lungs won’t help me breathe
Once again, I long to take on responsibility
But my memory holds me in back in fear
Once again, I long to honestly answer a simple ‘how are you’ ?
But I grimace a smile and reply “I’m fine”
My longings are overflowing in torrents; to dance with my daughter; Zumba with my friends; walks with my husband; run in the rain; work in the garden; host parties; take my Mum out again…
But for now, the fallen leaves need to rest. It’s not the season for longings, my tree is stripped bare. This is the longest season of all; resting, lying dormant.
The snow falls and in contrast, the bare bark is transformed into a beauty unnoticed before.
Slowly, the memories of the leaves fade and I focus on what’s still living.
This bleak winter unearths opportunities that have been buried deep; reflection, reading, writing, prayer, friendship, relationship, encouragement and love.The true beauty of life.
The bark looks different everyday, and change is palpable;
An extended walk; extra responsibilities; a day without enforced rest
The first bud appears filled with opportunities for new hope and excitement of the potential it holds.
But it’s not a leaf. What emerges is far more beautiful; delicate, exciting and vulnerable. The scent is intoxicating; its colour dazzling.
Is this my chance for dancing, dinner parties, commitments and a run?
So fragile, so delicate. An early frost will leave me bare again. Stunted for another long season.
But the promise is there and it’s tantalizing. I could just make it through. There’s always a chance the blossom will bear fruit and I’ll be back to my full crowning glory…