In the midst of debilitating sickness, God sustains.
by Laurie Glass
The disease that would forever change my life crept up on me. I felt tired, but with worsened chronic pain, environmental illness that posed work challenges, and losing my dad, I’d been through a lot over the previous year. So I wasn’t concerned at first.
But as the weeks went by, the fatigue continued. Sleep didn’t alleviate it. In time, my muscles started aching, adding to my misery. I became lightheaded easily, triggered by simple things like riding on an elevator or scrolling on a computer screen.
Even going to the store became challenging. I couldn’t tolerate the vibrations from pushing the cart. The lights were too bright and the music too loud. I’m drained. What’s happening to me?
Noise and confusion
My last few attempts to attend church didn’t go any better. As people were moving about and conversing, I wanted to shout, “Stop! I need quiet and no movement to get my bearings.”
But all I could do was remain quiet and brace myself.
While I was driving one day, I became confused and started to panic. Is this upcoming street the right one to turn on? My brain couldn’t discern whether it was or not. This was not an unfamiliar place. I’d driven the street to a job I had worked at for ten years.
Diagnosis
I was fortunate to have a good doctor who listened to me and took my concerns seriously. He ran a number of tests, all of which came back normal.
For some time, I thought I knew what I had, and my doctor felt the same. So it came as no surprise to be diagnosed with myalgic encephalomyelitis (ME), a multi-system chronic disease that is more complex than many people realize. There is no treatment, and few people recover from it.
Details
This disease is also called chronic fatigue syndrome (CFS), but the fatigue, as debilitating as it can be, is only one symptom. It’s more than simply being tired. I know what normal tired is; this is more profound.
The term CFS also disregards the other debilitating symptoms that many people have, like muscle aches, post-exertional malaise, sensory issues, unrefreshing sleep, lightheadedness, memory issues, and concentration difficulties.
Altered routines
Regardless of what anyone calls this disease, it has changed my life. I used to work full-time, take care of everything at home, exercise, engage with friends and family, and spend time writing and running a website on the side.
Now I spend most of my day lying down, wondering which task to do on a given day. Wash the dishes or get the mail? Do a load of laundry or cook a meal? Take a shower or do some cleaning? If I push myself to do more, I crash, unable to do anything.
Questions filled my mind: How will I take care of myself and my home? What happens if I get worse? I can’t afford a caregiver. How will I manage financially? What good can I do in my corner of the world when I feel like this?
Losses
I lost so much. I could no longer work or walk for exercise. I couldn’t stay up throughout the day, and I didn’t have much energy to socialize anymore. I had to stop having friends over, and I saw family members less often and for much shorter periods of time.
I missed the mental sharpness I once had. Words remained on the page or screen because my mind couldn’t process them. I forgot things I didn’t forget before, and I struggled with finding a word.
All of this led to losing my ability to write, something I had dearly loved. For years, it was a way God used me to speak into the lives of others.
Crying out
Under the weight of grief, I had even more questions. What’s left? Is this all there is? What’s the point?
In desperation and hopelessness, I cried out, “It’s too hard!”
In those raw moments, God was listening. With my memory issues, I don’t remember details, but I know He ultimately comforted and strengthened me.
Moving forward
I couldn’t keep on the way I felt. I had to find a way forward.
It was a process, not a turning point or an “aha” moment, but I knew God was steering me. When I thought of all I couldn’t do, I felt a nudge to focus on what I could do. When I was tempted to complain, I felt impressed to focus on something to be grateful for instead. And I had so many things to be thankful for, even in the midst of the changed life that ME/CFS brought.
Coping assets
From past life challenges, I understood it was OK to grieve, that it’s better not to judge my feelings but to accept and release them. I discovered how to process painful emotions through journaling. I’d also learned to let go of “all or nothing” thinking and break things down into steps.
These previous life lessons helped me cope with my situation. Tapping into my organized and efficient nature, I find easier and creative ways to do things, enabling me to care for myself and my home.
Being an introvert helps me handle the isolation a chronic illness brings. I can order nearly everything I need online, which makes shopping much easier. While I can’t walk for exercise anymore, I can sit outside and enjoy the fresh air and sunshine.
Despite the years I lacked enough mental focus to write, I’ve regained the ability. I can speak into the lives of others and pray for them. I’m grateful God is still using me in spite of my limitations.
Gratitude and attitude
I still find it too easy to complain, but I often redirect those thoughts to gratitude. Doing this gently ushers me out of grieving and despair to a place of acceptance, inner strength, and a changed attitude. I regularly look for things to be grateful for — one of my biggest takeaways from this experience. I’m blessed that the Lord nudged me and helped me change my outlook.
Yes, my life is a mere shadow of what it used to be. Yes, I’ve grieved over several things this disease has taken from me, and it took time to accept it. I can find many reasons to grumble, but I can also find many reasons to be grateful. I may miss some things from the past, but with God’s help, I’m also able to make the most of the present.
Though so much has changed since I was stricken with ME/CFS, God hasn’t. His steady presence is a source of comfort and strength no matter what comes my way.
Further reading: Coping with Chronic Illness
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