The blog has been quiet lately, but my body hasn’t. Writing is on my mind and in my heart, but my body has had different ideas on how to spend my time.
Chronic illness has caused a flare, and it forces me to reevaluate everything, again. The ever-changing tides of energy are low, the waters of my tears pull me low, leaving me quiet and uncertain.
Sometimes that is just what a person needs. Let me share with you a bit of my story today, what the life of a “spoonie” is like ) . And then? The best part. The beauty gleaned.
First though, to understand the good stuff we have to pause and study where we are. Where we’ve been…
Letting go of control about the outcome
Goals are important, they give us focus and direction. However, they seldom take into account brain fog, fatigue, widespread pain, loss of function.
I fight to not beat myself up all the time; why am I so distracted, so lazy (not true, but it sure feels like it laying around so much!)?
Other people accomplish big goals, I reason. But maybe other people aren’t fighting their own bodies. Guilt has no place here, yet chronic illness always tries to wedge in somehow.
When will I be a kickboxer and hike high mountains and paddle across great expanses of water, I wonder.
Daydreams imagine the athletic person that has always been on the inside, being able to move with reckless abandon.
It was me once, and someday I do trust that it will be me again.
These days, I sincerely celebrate riding my bike a few miles or walking up the stairs without crawling or hugging someone with full passion. Those milestones matter just as much.
Working to keep spirits up and outlook fresh and full of gratitude and hope takes work. Energy. The ebb and flow of the currents hold me as I bob about, watching and waiting.
Trusting in the constant state of changing tides.
Letting go of control about the future
I’ve no degree, no marketable job skills to support myself, would struggle mightily to work full time. Yet…after 20 years, my illness is still not considered a true disability in the medical world. It is. A dis-ease. Unpredictable.
But what have I gained?
While it is true, life can be challenging, I don’t think I would ever trade it in for complete health, if it meant I’d lose the precious gifts I’ve gained because of the downtime.
A keen awareness of every small thing. Deep appreciation for every flower growing from a crack, unusual cloud, solitary bird singing, wind chimes, a friendly checkout face, etc.
When I am good I am HIGH energy, trying to fit it all in. Those healthy days are all the sweeter because there is something to compare them to. None of them are ever taken for granted, and that?
I do believe that is a gift.
Low tides allow time for picking up the beautiful things hidden to our naked eyes under the changing waters. We suddenly are amazed at the tiny details we’d miss if not for the shifting seas around us.
Letting go of guilt
So many phone calls left yet unreturned because my hands won’t hold the phone, or the cognitive skills required to have meaningful conversation are out of my grasp.
Outreach intentions that I don’t have the stamina for yet, letters to write and my purpose…encouragement, set on a shelf until I can.
It is a fight to get outside of your own head when you let people down, even when it is beyond your ability to do differently.
It’s been so very long, that surely people forget that my body struggles so frequently. Because I know I do, and I am in it! Because I don’t want to dwell on it, in it, and don’t often invite others to either.
Life is too short and amazing to spend time feeling sorry for ourselves, but that is a fine line to walk. It is okay to share our struggle too…because, it helps others know they are not alone in their journey.
Letting go of control when your child suffers
When my own child became sick a few years ago, suddenly my own private world of suffering expanded. It sucks. There just aren’t other poetic ways to sum that up with quite so much eloquence as simplicity.
As parents? We are rendered helpless.
She suffers from POTS, advanced Lyme disease and a host of co-infections. This post is dedicated to my girl today. She is fighting so hard, and it prompted me to choose a few topics to write that are relevant to you.
If you don’t know someone who is chronically ill, I rejoice. But if, when, you might?
You’ll be able to come back and find a resource here of how to help. To understand a day in the life a bit. To celebrate the caretakers who give so generously without expectations.
While looking for this kind of hope for my child, I came across a lovely blog post from Living Grace. It gave me a greater understanding of Lyme disease, and what startled me?
As I was looking for my child in this, I saw my own story looking back at me.
Beauty from ashes comes when we let go of control
Chronic illness takes away the freedom of choice.
Consequently, the only choice left is to give in and wait a flare out. That isn’t the whole story though.
We have a hope, a faith that God stores every tear and will restore us in ways we don’t understand. We have the assurance that beauty will be made from the ashes of suffering and confusion.
Ours is the promise that He walks with us every step of the way.
In the meantime? In the now? We have each other and the opportunity to share our stories, pray for each other, develop our empathy muscles, find ways to reach out and give hope.
It is true that many dreams remain unfulfilled, including the start of my life coaching business…for now.
In the meantime, in the space of living now, dreams are being realized that I am not even aware of. The churning waters of life flow back in, altering the sands of time and space around us.
God’s dreams for us are being tended to, one piece at a time. They will be worth the wait…
I think you’ll love this encouraging post today about how one woman sees beauty in her ashes! Faythe Andrews shares on The Joyful Life
Chronic illness resources that will encourage you: ♥
Joy Bible Study for chronic illness sufferers was created by Vibrant Christian Living
FibroWHYalgia – I’ve had my copy for years, it is still one of the best resources I’ve read
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This was great, Christa. I know how difficult it was for you to write.
(((Grandma))) I love you ♥