ME: what it’s like to live with ME and chronic illness

 

How do you describe a life of continual illness, pain and profound fatigue? It’s hard, isn’t it?  We need empathy, compassion, and maybe someone who lives with the illness to show us. I’d like to be that person for you today.

Imagine wanting to be a vibrant, blooming flower for God, but you droop, fade easily, curl up with fatigue. You seek shade, because all bright light hurts your eyes. Sleep is fitful but it’s all you really want to do. So called ‘normal’ life is far too dazzling, hectic and loud for you to join in with for very long.

“Yes, I have M.E but it doesn’t have me; God does, and I am safe in His arms.” So runs the last line from a poem I penned to try to describe my life with M.E. Spanning over 25 years of sickness and weakness, M.E might have stolen my health and vitality but it doesn’t get to have the final say on who I am or, more importantly, Whose I am.

I’m housebound with M.E, fibromyalgia, arthritis and hypermobility syndrome. (You can see the myriad symptoms of M.E in this list.I rely heavily on God’s sustaining grace each day. I also have a Lottery winner tendency to spend, spend, spend whenever a little more energy or mental focus is present, instead of the usual resting and pacing after any activity!

 

As a writer and a poet I’m able to express some of the frustrations of living with such an illness. I’m hoping, as you read the poem below, that you might stop to contemplate just what M.E can feel like on this, M.E Awareness Day, part of raised awareness during the month of May.

Earthbound

A mind

blurred as fog

cloud of unknowing

sinking bog

slowed and stagnant

just tiny ripples rising

from the smog

vague on the horizon

 

A body

wearied beyond measure

bandage-bound

by pain, fatigue

long and profound

unrelenting weakness

rooting to the ground

muscle-chained down

 

A heart 

longing to be free

like eagles soaring

near the sun

to touch the heat

of healing rays

piercing us undone

from darkest days

 

A spirit

lifted up by love’s call

taken up to places

out of reach of all

that holds us prisoner

to the earth

united to the One 

who gives us life and birth

©joylenton

The poem above comes from my book, ‘Seeking Solace: Discovering Grace in Life’s Hard Places’, available on Amazon. Earthbound was actually its working title for a while. All proceeds from every copy sold go to Action for ME, a charity which raises awareness and supports carers and sufferers, while raising funds for research purposes.

Last year I wrote about life from the other side of living with M.E and chronic illness, singing my beloved husband’s praises as my carer. It was written before he became even more unwell himself. You can read that post here.

Thank you for being here, my friend, and for reading my words. Your sweet presence helps and encourages this weary woman more than you know!  🙂 ❤

Seeking shelter

ashes of love file image ~ post on WoJ

Life can leach the life right out of us if we let it. Drain all vitality. Leave us limp and wilted as can be.

We seek a place to feel safe, free from harm, to rest and recuperate. A shelter for which our soul’s long.

My safe place? In my Saviour’s embrace. Beneath the shadow of His wings.

Clinging close to God’s side is where I want to abide.

And all the more as society (read:government-shaped attitudes) cause me to want to run and hide away.

There is no stable ground to be found in this world. All is shifting sand. Fickle and failing.

Those with sickness, disease and disabilities are increasingly marginalised and ostracised by a society quick to point fingers but slow to lift them to help.

Compassion doesn’t often seem to extend to those too ill to work. We are presumed to be lazy good-for-nothings, until proved otherwise.

The poem below was written out of my personal experience of living with M.E, fibromyalgia and other chronic illness for over 20 years.

I wasn’t going to write today, depleted and drained as I am. But God graced me with these words on a subject I feel strongly about.

It is also written in empathy and sympathy for all who suffer and to honour International ME/CSF/ & FM Awareness Day.

‘Silenced’

silenced PJ poem image

My voice is weak

Silenced by the strong

While I have a soul longing

to seek a place of shelter

Somewhere I can belong

Bathe these wounds

in Gilead’s balm

Receive oil of joy

to slip away from harm

Pain penetrates each day

Its probing fingers linger

like a stubborn stain

Leaving me weaker than before

Coated in a covering of shame

Living on the margins

Broken by its borders

A limp-ragged doll, I blink

wary eyes at society

and slink away to hide

Because I’m washed up

by its tide, become detritus

on the shore, breathless

in my distress, dis-ease

But the Healer hears and sees

Cradles His hurting child

Gathers her fragments, lost soul

Breathes new life, new hope

to restore and make her whole

©JoyLenton2015

beach low tide PJ poem pin