What ME/CFS Feels Like

Simply stated, ME/CFS feels like some phase of the flu each and every day.

Some days seem comparable to the “worse flu in the history of the flu.” You know that feeling. On these days, you don’t want to get out of bed since even the smallest activity drains your necessary resources. As much as you long for comfort, the idea of someone actually touching you feels repulsive to your achy body. Every sound overwhelms your system, including your own voice. Eventually it dawns on you that the entire day has passed. You ponder if other people actually lived the day with ups and downs–joy and heartache. But you don’t really know, and you find that you are fine with that.  Your life appears to be painstakingly bleak and distorted. And you’re fine with that, too.

Other days have a “just coming down with something” feel to them. You feel off: slow to speak, slow to act, slow to think–just plain off. When asked to make a decision, you waffle with uncertainty. Actually, even simple choices seem mind-numbing. You think if you rest a bit, you can get your legs up under you again. Perhaps a nap or an early bedtime might help. You spend the day in a semi-blur, but hang on to the hope that tomorrow will be better.

Finally, the remaining days have that “just getting over something” edge. You may start out spryly enough, but your resources become quickly consumed. In an “it’s not a matter of if, but when” mentality, you get going, hoping to accomplish something tangible before your strength vaporizes. You enjoy what you manage to complete, but if you push too hard too fast, you’ll face the consequences. Still not the cat’s pajamas.

Although not an ideal comparison, I chose the flu because it’s so doggone relatable for everyone. You all can imagine, based on your personal experience, just how a patient with ME/CFS must struggle to cope. You can realize that all the things a person with ME/CFS chooses not to do are merely things you would choose not to do if you had the flu. Talk on the phone. Go out for coffee or to eat. Make and keep appointments. Attend parties, weddings or other events. Go to church. Clean house. Run errands. Cook dinner.

A person with ME/CFS does not make these choices due to lack of desire. As a matter of fact, she longs very much to be able to do all that and more. Truly a person with ME/CFS merely practices the concepts of triage on her own life, sorting and acting based solely on priority.

For myself, I have had to choose my priorities very carefully. I tend to my personal necessities first, followed by ministering to my family (husband, daughter, son). Because I am a homeschool mom, I have no choice but to bump the obligation of schooling my son to the top of the “family” list. And, honestly, I generally have but a little left over, which I spend wholeheartedly on my family’s other needs or wants. All other opportunities–as welcoming as they may otherwise sound–must sink down the list, rarely gaining more than a simple, wistful, “I wish I could” thought.

Living with ME/CFS offers a long, lonely road for its pilgrims. Often misunderstood and forgotten, these hardy souls must dig deeper to ferret out nourishment for their souls lest they reap the sorrow of discouragement or depression. They must realign their expectations, and hope with all their hearts they will find their loved ones disposed to do the same.

Thankfully, as a Christian, I have the resource of the ages! In Him, I find a “very present help in times of trouble” (Psalm 46:1). He pours out grace upon my soul, ministering to every parched portion of my life. He reminds me of eternity, and that today is but a wisp in the whole grandeur of it all. He anchors my mind, that it may not run amok with confusion and doubts. He provides joy in my journey, and I consider it my honor to yield to His molding hand.

“Then I went down to the potter’s house, and there he was, making something on the wheel. But the vessel that he was making of clay spoiled in the hand of the potter, so he remade it into another vessel, as it pleased the potter to make. Then the word of the Lord came to me saying, ‘Can I not, O house of Israel, deal with you as this potter does?’ declares the Lord. ‘Behold, like the clay in the potter’s hand, so are you in My hand, O house of Israel'” (Jeremiah 18:3-6).

“Woe to the one who quarrels with his Maker–an earthenware vessel among the vessels of earth. Will the clay say to the potter, ‘What are you doing?'” (Isaiah 45:9a).

“For You, O Lord, have made me glad by what you have done; I will sing for joy at the works of Your hands” (Psalm 92:4).

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