Living with M.E and chronic illness can feel like a see-saw act of creeping backwards and inching forward again as symptoms fluctuate throughout the day.
Having a shower (never mind a hair wash) feels like a major event, and days can pass when it’s easy to forget what fresh and clean means in a conventional western world sense.
Similarly, in the home, one may have to become accustomed to layers of stuff littering surfaces already covered in a patina of dust. Unless, of course, lots of help is available from family, friends or external sources.
It becomes a question of dropping standards or drooping with fatigue. This isn’t laziness. It’s all about priorities and using up precious resources.
When every action uses up valuable energy it means deciding between sitting around in PJs typing away or instead getting oneself spruced up and presentable.
It becomes a daily tug of war between desire versus duty, reward over responsibility and balance against burn-out. Payback is always pervasively present.
Every activity, (physical or mental) however minor it may seem, causes a degree of reactivity. No pain, no gain, apparently.
And sometimes? Sometimes you will find me here because I have words God gives me that I ache to share.
And occasionally, yes, I spend more spoons/energy and time on social media than I should, because it’s a wonderful distraction from ever-present pain and physical limitations, and a place where supportive friendships have been formed.
Yet even typing is no mean task when hands are cramped and stiff, arthritic, weakened by M.E. But the rewards? Incalculable, if not easily definable.
What I do know is this:
Writing gives me a voice when my own is too weak to speak.
Writing is a wonderful creative outlet that helps me to express a side of myself that lay buried for years.
Writing is a gift that can be used to bless and encourage others and let them know they’re not alone with their struggles.
I’ve been creeping backwards and inching forwards ever since I’ve been blogging. Because I can’t hurry. Everything takes much longer than anticipated.
Although I’ve been ill for 25 years and counting, the unpredictability of symptoms means that every day is different.
Some days cognitive function is poorer, on others pain is more pervasive, mobility is more impaired and movement is crippling, or fatigue is excessively high.
Aiming to have a life of purpose when you live with pain and incapacity requires an enormous amount of determination and patience.
I have heaps of the former and precious little of the latter, but I’m learning how to wait out the seasons and look for small signs of fruit appearing.
And my reason for sharing a snippet of my life with M.E and chronic illness is to say that you too can take heart in the little things, the green shoots barely there, the harvest still to come.
We all have periods, seasons even, where we feel stuck, stalled and slowed down, longing for forward momentum, to give birth to our dreams.
However, with God, nothing in our lives is ever wasted. Fallow or reaping times alike, it’s all useful for our growth and development, wisdom and learning. It is manna to give away, to sow into the lives of others. It’s a means of grace.
We all need to be aware that this life is not a race and not always given over to the swift and the strong either. Remember the hare and the tortoise story?
Keep on inching forward, my friend. You are still making progress, no matter how slow it seems. Try not to worry when there’s a dip, droop or derailment.
You may creep backwards sometimes, and that’s okay. God is still on the job, still working in and though all things for your ultimate good. And, inch by inch, you are still moving forward. Hang in there! 😉💜
Over to you:
How do you cope with slow seasons in life? What helps you to stay encouraged when progress is halted? Please feel free to share in the comments below.
Beautifully put, Joy, as always. I find that using my energy-spoons, on days when it’s possible, to create words, poems, fiction, liturgy, photos etc has always been, for me too, a sweet sowing of slow-growing seeds that bloom over time, often unseen, gently giving back to me, in unexpected ways, encouragement and special moments straight from His heart of love. Bless you for all you share.
Dear Joyce, not only do I love the alliteration in these words, I also love your hope and faith when describing how your creative activity is:”a sweet sowing of slow-growing seeds that bloom over time, often unseen, gently giving back to me.” They not only give back to you with great encouragement but they also find a home in the hearts of those who see and read them. I’m blessed by your words wherever I see them too! And they are deeply appreciated here because I know the effort it can take to read and leave comments when energy and focus are low and fatigue is high. Have a restful, blessed weekend, my friend. 🙂 x
This is such an encouraging post, Joy! I love how you pointed out that when we are struggling just to get through the day, it is not that we are lazy, that the limitations are very real. Your words about life not being a race, and that God is working even when the pace seems slow were a wonderful confirmation for me. The post I am working on for tomorrow speaks of this very truth! I love when that happens 🙂
Blessings, sweet friend,
Yes, Kamea, “the limitations are very real” and, thankfully, so is the grace poured out to enable us to live and write and create! I’m delighted to have touched a chord in you, my friend. It’s a beautiful thing when God leads us in that way. You influence and inspire me too by your words. I hope to catch up with the new post soon. Have a blessed weekend. 🙂 x
One thing that helps me in those seasons is remembering it’s just that…a season and it will move on to a new season so how can I grow on the season I’m in now?
Thanks for these encouraging words! ( Your neighbor at #TellHisStory)
Rachel, it is grace-led perception to see how seasons come and go and that soon the challenging one we are in will give way to a new thing. And to ask ourselves how best we can learn and grow in the current season is God-given wisdom to help form and shape us more into Christ’s likeness as we learn to live well right where we are. Thank you for adding your lovely insights to the conversation here! Blessings. 🙂
Beautifully and well said….So grateful nothing is wasted…I appreciate your honesty and your wisdom and the visual of creeping backwards, inching forward…Thank you!
Hi Dolly. Thanks for stopping by. It’s lovely to see you! We can always take heart (especially as the years spool out long behind us), that despite how some seasons may have seemed wasteful at the time they were still places where we met with grace and were shaped for our journey of life and faith. Bless you, friend. 🙂
I love your optimism, Joy, as I know it’s not easy when you feel bone weary. This especially encourages me – “However, with God, nothing in our lives is ever wasted. Fallow or reaping times alike, it’s all useful for our growth and development, wisdom and learning.” And that God is always working for our ultimate good. Thank you.
Trudy, I know that you too are aware that any optimism we may have is honed in the fires of affliction and seas of adversity where we rely on what we’ve already experienced of God’s goodness and grace and take that confidence with us into an unknown future. But of course there are days where we feel low and discouraged and have to actively pursue the peace and hope we have in Christ. Maybe it means even more to us for being hard fought for? Blessed as always by your visit. 🙂 x
I love these words of yours: “. . .you too can take heart in the little things, the green shoots barely there, the harvest still to come.” I handle the hard stuff the way you do – writing. Your words bless me. Thank you for them!
Hi Joy. Isn’t it wonderful how therapeutic creative expression/writing can be in helping us “handle the hard stuff” as you describe it so well? I’m grateful for your words and blessed by your visit, my friend. 🙂 x
I have fibro so I understand how a chronic illness can slow things down to almost a crawl. There have been frustrating times because I cannot do all I used to do. So when I finally get a post out it is a huge deal for me…and when I get folk reading and commenting..well that makes my day. but if no one read I would still feel pretty good about it since it is very good therapy for my soul. Good post.
Hello Betty. It’s lovely to meet you! I have every sympathy with you because fibro is also part of the picture of the chronic illness I experience. And I know all too well how debilitating, painful and draining it can be. I’m so pleased you have found a joy in writing as well. It really does help to express ourselves in this way, especially when we feel weak in other ways. Yes, getting people who read and leave comments is the icing on the cake, isn’t it? I agree with this too:”if no one read I would still feel pretty good about it since it is very good therapy for my soul.” Amen! May you continue to feed your soul in this way and enjoy the process of creating words for others to be blessed by as they read them. It’s a wonderful thing to connect together and encourage one another, isn’t it? Thank you for stopping by and taking the time and trouble to leave a comment. I appreciate it. God bless you! 🙂