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!  🙂 ❤

Flight into freedom

When pain presses in hard we find ourselves longing for freedom.

Chained to ground.

Desperate to escape the shackles.

Looking for a way to live lightly and freely.

Get beyond the everyday struggles.

Seeking goodness. Seeking grace. Seeking God’s face.

Longing for our eternal home.

‘Flying free’

I want to fly free

from all that keeps me

in captivity,

all that imprisons a frail body

held fast and earthbound.

To move with the flow and embrace

Holy Spirit’s current of grace.

Soar above the ground

above all circumstance and place,

all sound and sight

of fallen humanity

into a space

where You dwell

and all is Light.

Become as bird, eagle borne

given strength to flee

and rise above this earthly frame

tied down, weighted fast

with sickness, sin and shame.

Fly into Love’s fragrant air

breathe deep and easy,

no pain or suffering anywhere.

With mind, body, spirit as one

stretch out to reach glorious Son,

feel heat of His radiant rays

filling all moments, hours and days.

Dance to the beat of His song

of freedom beckoning now

whispering softly

 urging me on.

One day I will truly fly

arise and drift beyond

these mortal skies

at last.

©JoyLenton2013

“But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary; they will walk and not be faint” ~ Isaiah 40:31

Linking here with Lisa-Jo Baker for Five Minute Friday. This week’s prompt is:‘Fly’  You are warmly invited and welcome to join in.