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!  🙂 ❤

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21 thoughts on “ME: what it’s like to live with ME and chronic illness

  1. Holding close your words today, cherishing the way you love, Joy, despite all. Yes, because He first loved us, which makes all possible. But you choose to love, over and over, often hourly, perhaps even smaller increments at times. If “Hope is the thing with feathers / that perches in the soul / and sings the tune without the words / and never stops at all…: (Thank you, E.D.), then you, my friend, have a flock roosting within you.

    • Oh, Laurie, your words (so undeserved) brought tears to my eyes, because I know how much I battle so imperfectly to live and love as well as possible. Praise God for His grace and strength and for showing us the way in Jesus. And how I love that line from the inimitable ED! Thank you, sweet friend, for all you mean to me and all you see that I still struggle to view as you do. xo ❤

  2. Dear Joy,
    You have brought my tears to the surface again, Dear Friend, in remembering how your words were such a balm to me last year at this time. I clicked back over to your post about your husband, and I think I was still so new to blogging that I felt too timid to leave a response. But I remember purchasing your book, because of the way your words hit home in my heart. And the poem you shared today is one of those that I have read on multiple nights, when sleep eluded me as well:
    “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”
    And these words were the comfort my soul needed, the reminder that I am “lifted up by Spirit’s Love” to the One who will never let me go. Thank you for sharing your heart with those of us who have needed these same reminders: Who we are is HIS. Gentle Hugs, Love and Blessings to you! xo

    • Dear Bettie, how lovely it would have been to have heard from you then, but oh how sweet it is to receive your thoughts now! I’m so grateful for your friendship and awed by the way God knew the words He gave me would find a perfect fit for your heart. During a weekend when my body sought to remind me just how pain filled it can be and stalled my responses to this post, I was blessed by remembering “the One who gives us life and birth” and holds us as we ache with this world’s weight. Amen to these words: “Who we are is HIS” and how reassuring it is to think of His love sustaining us through everything! Gentle hugs, love, prayers and blessings gratefully returned to you. xoxo

  3. Your words, and the courageous, tender heart they come from, are a balm and a light for me. I am presently largely in retreat mode from the world beyond the things I absolutely have to to give my energy to; so many things are simply *too much*. I suppose it’s a testament to God’s gentle working in your words, that this is one of the few places I am visiting on the internet these days. So glad I did today. My love and prayers are with you, Dear Joy, and I have just purchased your book. ❤

    • Cheryl Anne, retreat mode sounds quite inviting to me these days, and describes how my soul is leaning toward a greater need for strengthening and restoration in every way. I feel honoured that God drew you toward these words, and more so to think they have sparked an interest in my book! It’s not an easy read in many ways, being largely autobiographical in nature, but my hope and prayer for all who read it is for them to sense just how much God’s grace has and continues to sustain me through the hard places of life. Thank you so much for investing your energy and time here. I also deeply appreciate your love and prayers. May you have a needful season of deeper rest and refreshment in the Lord, so that you can return soon with your lovely, God-honouring words, poems and prayers. Blessings, love, hugs and prayers to you, sweet soul sister. xo ❤

      • Thank you, Joy. I am praying for you. Your book arrived Sunday; a wonderful gift from God! Be gentle with yourself. ❤

  4. You are such an inspiration and encouragement, my friend. I’m sorry that this illness is in your life, but so thankful for the way God uses it and you to bless others. Blessings on your weekend, JOY!

    • How kind of you to say so, June! Yes, none of us would wish to go through painful things but they have a wonderful way of developing greater faith and God-dependency in us, and teaching us so much as we yield to the wisdom and life lessons they bring. We cannot really have a meaningful message without experiencing pain and mess, nor a stirring testimony without some tests and trials happening. I think the main thing is to sense God’s hand at work in everything, guiding us to lean on and receive our strength from Him. The wondrous thing is how His grace brings beauty out of ashes for all of us. May the week ahead be full of hope and encouragement for you, my friend! xo

  5. pace and balance…and when that doesn’t work, I crawl into my chair, put on a warm robe and blankets, and wait it out. I have mild lupus, but those moments/hours/days are horrible. I can only imagine your pain Joy, but will hold you in prayer. amen and amen!

    • Oh, Nancie, my soul recognises this situation all too well: “pace and balance…and when that doesn’t work, I crawl into my chair, put on a warm robe and blankets, and wait it out”, even if my crawling is done more in bed than chair. I’m so sorry to hear how lupus afflicts you, my friend. It’s often hard to fully understand another’s experiences with illness and pain, though it is a great leveller for us all. Thank you for your prayers. They are returned to you with gentle hugs and love! May the times of suffering be minimal and the Lord’s presence provide hope, peace and solace for you. xo ❤

  6. Dear Joy, My heart goes out to you because of all the pain you have to endure. I’m so glad you find beauty and things to smile about. You have certainly brought inspiration and encouragement to me through your poetry, your love and grace that shine through. You really are a blessing!

    Much love and many hugs to you my dear sister/poet/friend! xoxo

    • Dear Gayl, I’m so thankful that over the last few years God has been taking me on a journey of deliberately seeking out beauty in the everyday, and teaching me to notice markers of His loving presence. Those glimmers of grace are often all we need to restore hope when sickness and pain pervades. It’s heartening to think God is using me to bring hope, encouragement and inspiration to others. We don’t always see these things for ourselves. Although I do sense them in you, my friend. You are such a blessing to me too! Much love and gentle hugs to you, sweet poetic sister. xoxo

  7. I’m so sorry for what you go through, Joy. I love that however weary your body and spirit are, you know M.E. doesn’t have you. Yes, it’s God who has us, and we are safe in His arms! Love and hugs to you!

    • Trudy, I know you have your own heavy load to bear emotionally and physically, and how powerfully God is working in and through you too. We can rest in God’s all sufficiency for our weakness, and try to live lives which speak out His goodness and grace to other hurting souls. Love and hugs to you, dear sister in suffering and warrior woman of faith! xo ❤

    • Michael, I am touched by your kind encouragement and generosity in sharing my words. Thank you! Although I might wish to emphasise it’s most likely because of my pain (rather than despite it) that God works as He does in and through me. Jesus is extra close to those who are hurting, whether physically or mentally, and He whispers such wonderful soul solace into our hearts that those who experience it cannot help but share. It’s a privilege to walk with you, too, dear friend! ❤

  8. Hello Joy. You are an inspiring soul and God has given you a great gift, because you are a talented and impactful writer. Your words have a gentle yet powerful strength behind them. Thank you for bringing awareness of M.E.. I didn’t know anything about this disease. I read some of the links––wow! I’m so sorry that you’re going through this and I admire your attitude. Your poem is lovely and touching. God bless you. ❤ xx

    • Hello Vashti, I am in awe of your creative gift, my friend, and humbly grateful for what you see in these offerings. Praise God for equipping both of us to write in our own unique style! Most of the time I prefer not to dwell on the illness I have or write about it much, but on occasions like this it seems fitting to raise a degree of awareness as such. After struggling for so many years, God has given me an ability to rest in how I am situated, frustrating and limiting as it can feel sometimes. Thankfully, God’s grace is more than enough to sustain and inspire me to write when He needs me to. Although I am sensing a holy call to withdraw for a while during what is proving to be a season of increasing relapse for me. Bless you for reading and understanding how hard it can be. One of the things I currently struggle with is having sufficient energy and mental clarity to visit the blogs I want to read, including yours, sorry to say. Hopefully, after resting more, normal service will be resumed again! Thank you for being here and for caring. You are such a sweet soul! God bless you. xox ❤

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