I want to write, but I have been struggling with brain fog. And for this blog, I've been struggling with how to frame the the topic I want to write on which is that of invisible illness.
I don't want to make the post all about me. I kid you not, the first draft was all about me. And writing it was helpful--to me. But you'd be bored.
The point of this blog that I've been adding to now for 16 years, was initially to advertise my services as a Christian Life Purpose Coach. As my work in that area waned, my purpose for blog posts became about promoting my ebooks and generally trying to encourage others.
God has called me to be a writer first and foremost and to use my gift of encouragement where I can. I try to focus on pointing women to greater trust in their creator, to offer them other perspectives I hope will bring clarity, to help them tap into joy, and to see their own life purpose as they choose to serve God. With that in mind, let's talk invisible illness.
Let me be clear, there are MANY invisible illnesses and conditions women deal with. You would never have seen the terrible PMS or PMDD. You wouldn't see my headaches, my muscle pain, my eight-month-long face pain, my torn knee ligament, my tinnitus, my fibroids, my type 2 diabetes, and so on. These were challenges God knew about but allowed. And I took on every one of them and walked through each challenge.
Chronic Fatigue Syndrome
I had suspected for years that I'm not built like so many other women are. I have boundless ideas, but not boundless energy. I might have in my younger years, but as time has passed, my energy has waned. I became even more aware of the fatigue over the past three or four years (and, no, I have never had the Covid virus).
I've now been through numerous tests ordered by my doctor to check for possible causes for my fatigue. All else has been ruled out as a possible cause so, while he didn't give me the official Chronic Fatigue Syndrome (CFS) label, I'm adopting it as I've studied the symptoms online and mine measure up. I told my doctor "I will manage my fatigue."
I've heard it said that God reveals what he wants you to know when he wants you want to know it. And now, with the revelation of CFS, I understand so much more.
I see why driving an hour in 2014 with my sister who likes to talk exhausted me. I was sitting in the truck not driving, that shouldn't be stressful, right? The meeting we were headed to would be stressful though for both of us. But now that I've learned more about CFS, I see that socializing or merely listening to someone for an hour each way in a truck can be a trigger of CFS as mentally taxing situations can lead to physical fatigue and post exertional malaise (PEM).
I see why I had to ask guests to go home after they'd been at my home for a swim for several hours. I was done. I see why after going to church on Sundays I wanted to sleep the rest of the afternoon. I also see why we stopped going to church Sunday mornings, because getting up, showering and being attentive for over an hour was becoming more and more taxing.
I've learned through the study of CFS and in forums with others who suffer with such, that showering can be exhausting. I noticed that without anyone mentioning it first. Showering, washing my hair, drying it, and styling it are a quadruple whammo for me.
What I mean by whammo is it puts my body into Post-Exertional Malaise (PEM). The feeling I get when in PEM is much more than simple fatigue as I might expect from aging. It is not about being lazy (as I sometimes blamed myself). It's about more than a blood sugar crash. It's about being wiped out. PEM means I get exhausted and need to lay down usually falling asleep.
Some who struggle with PEM have described it as feeling as though there is a poison in their body. And I know what they mean. I've also had that feeling.
And the only cure is to rest.
Up until now, I have spent years questioning what was wrong with me. I tried supplements. I exercised thinking if I could just get into better shape I'd have more energy. I dialogued with a naturopath. I studied adrenal fatigue, parasites, and more.
For years, I lived with a stronghold that I should be out working a regular paid job not working from home for peanuts. Another stronghold was I should be able to do volunteer work like so many other women are. And another: I should be losing weight after all my exercise, not gaining weight! (that's another blog topic.)
I did apply for many outside-of-the-home jobs. And doors didn't open. One I applied to would include doing home care for seniors. It seemed logical one day, but the next I realized I could hardly manage my own housework and yardwork without ending up wiped out with pain in my back and legs. I was experiencing post-exertional malaise (PEM) without having a name for it.
I simply assumed I was a flip flopper with no commitment to anything new. But God spoke to my gut and said, "not for you, dear."
I now see what God knew all along (that I was struggling with CFS) which is why he gave me such a supportive husband and the desire to stay home to raise my children and to work from home. God spared me from excess exhaustion.
I see now I was not a failure, I was not too incompetent to get a fulltime job, I was not being lazy, I was not a bore staying home so much. My fatigue was about more than not being in good enough shape physically. I was simply struggling with hidden illness.
We don't always see why God has us where He does. We don't see why our path is different. We don't always understand why doors don't open for us. But if God allows, we will see how perfect our life really is.
"God will perfect that which concerns us," (Psalm 138:8).
I always want to do more than I can. My imagination is huge and creative. I do have good days and accomplish a lot. But I have just as many days of fatigue where I have to push myself, or stay in bed!
My goal as I walk this revealed journey is to stop being hard on myself. I start each day asking God to help me use my ENERGY in the best ways possible.
I am being kinder to myself. I have learned I need to adjust my expectations even more as I PACE myself.
I have learned sitting around doing what seems like nothing is okay.
I still do gardening and yardwork, but I do about a quarter of the amount I might have years ago. I tell myself to walk slowly, to putter, and to skip extra trips back and forth the the garage to fetch things.
I could go on and on, but I won't. I'm fortunate my CFS is somewhat mild to moderate and not severe. If you suffer from chronic fatigue syndrome feel free to share in the comments or to email me your story.
