The past few weeks have been emotionally rough. The only way I can describe is I am overwhelmingly sad. My “fake it” smile even looks fake. My family has been noticing and then of course I feel worse because I am doing a horrible job at hiding it, which I usually am good at that.

Why do I feel like this?

I have so much to be thankful for, and I truly am. I know there are people who have it far worse than I do. I know my symptoms are gradually improving. But chronic illness is still chronic—it never gives me a day off.

The other day I even told my doctor, Dr. Masters, whom I genuinely love, that I didn’t want to come anymore. Not because of him, but because I’m tired. My only form of socializing has become his office 1x a week and Quest. The girls actually know me and my kids at Quest that’s how much I go. Somewhere along the way, this illness has become my life. Don’t even say, “Don’t let it define you” when you’re in my shoes( I pray you never are) but only until you FULLY understand how this feels then you can tell me how you handle it and only then I will try it your way. If you really want to help me I welcome you to PLEASE take a deep dive into MECFS, learn about it and what it does to the body and then I will take suggestions. Believe me, I HAVE TRIED EVERYTHING. I am still trying EVERYTHING and ANYTHING!

I have slowly been able to do more, and I am grateful for that. But I’m exhausted by the price I have to pay for something as simple as going to a store for seven minutes.

Every decision has become a calculation.

If I do this, I can’t do that.

If I shower and wash my hair today, I have to watch everything else I do to not exceed my energy. My energy limits have become like gold and something I have to budget carefully because once it’s spent, there isn’t a quick way to earn it back. Suffering in Pain or being extremely uncomfortable is the cost.

Everything costs me energy.

I have found myself not in a good place mentally despite my best efforts and trying to “ stay positive” I just can’t get happy.

I watch everyone else living their lives. Working. Making plans. Going to in person Church…

I’ll be honest I get jealous. Maybe even a little bitter.

People wake up, get out of bed, and think only about what they want to accomplish that day. That kind of freedom is something I miss. I will never take it for granted ever again. I miss the simplicity of living without having to negotiate with my own body. With most things in life, the rules are simple. If you touch a hot stove, it will burn you, so you avoid it because you know what the outcome will be. ME/CFS isn’t like that.

Mental or physical exertion may or may not cause extreme or minor symptoms. There are no guarantees. Every activity feels like a gamble. It’s a lot like sitting at a poker table.

You start with a small stack of chips. You play cautiously because you know the odds either are you will win or you will lose. But, when you begin winning a few hands. Your confidence grows. You’re up lot more than you ever thought and suddenly as your momentum picks up so do your thoughts. You start imagining what you’ll do with the money. You picture this surprise Disney trip, you picture staying at the Grand Floridian, how excited everyone is going to be with this extra money. Then one hand…

You lose everything.

The dopamine rush disappears as quickly as it came. You’re left replaying every decision. Why didn’t I stop? Why did I keep going? I knew better. Disney dreams are gone along with all that hard earned money 😩

That is exactly what living with ME/CFS feels like.

I start slowly, almost fearfully. Every step comes with anxiety because I don’t know what my body is going to do. As the minutes pass and my symptoms stay quiet, I begin to relax. I become more confident. Then I catch myself thinking, Wow… maybe I’m cured(I know it’s a big reach but I do that all the time bc I want that so badly)

No tingling.

No pain.

No heaviness.

I’m normal again. Thank you God, FINALLY.

For a fleeting moment, I pictured all these things I would do that I couldn’t before.

Then it starts.

My elbows begin to burn.

My legs become heavy.

The tingling returns.

And panic quietly creeps in.

Will I be able to walk this time? How long will it last? How intense is this going to become?

In a matter of moments, the future I had already begun celebrating disappears.

Just like the gambler who imagined what life would be like with the winnings, I begin imagining life without ME/CFS, then reality pulls me right back.

It’s gloomy outside, and if I’m being honest, that’s exactly how my heart feels right now.

Is this the kind of thing a Christian should be posting? I don’t know. What I do know is that I’m not a perfect Christian. I’m an imperfect human being trying to navigate another very difficult season of life while learning to trust a perfect Savior.

I also do not want to sugarcoat the Christian walk and pretend everything is PERFECT all the time bc it’s not, Jesus is perfect but this earth isn’t. But, I am having a hard time believing right now especially because I know he can heal me with one touch, so why am I not healed yet? Like David in Psalms and I know I’ve written this before but “HOW LONG GOD?” There has to be more to my life than this. Am I just here to suffer?

So lately I’ve found myself clinging to Jesus’ words in Matthew 11:28:

“Come to me, all who labor and are heavy laden, and I will give you rest.”

Before I get into it, I truly do not know what I would do without scripture. It really helps tremendously.

Jesus calls us to bring ourselves to Him—especially when we are sad, anxious, sick, confused, grieving, or overwhelmed. His invitation is to bring every emotion, every burden, and every broken piece of our hearts to Him, allowing our relationship with Him to grow stronger through every season.

He doesn’t tell us to come to Him once we have our lives figured out or when everything is finally perfect. He says, “Come to Me.”

He welcomes the broken parts of us because only in Him can we find true rest. Only in Him our hearts begin to heal. Only in Him the broken pieces of our lives be put back together one piece at a time. We will not find that peace in anything of this earth and thats the beauty of the Gospel. Jesus isn’t waiting for us to become whole before we come to Him. He asks us to come as we are, because He is the One who makes us whole. I am far from whole right now but despite how I feel I’m writing these words because I do know them to be true even though I am struggling to believe them at the moment.

I will still search for Jesus in this, I will still show up to pray and read my Bible even if I’m skimming it and can’t retain a word. Even if I don’t have words to speak to him, I will still sit.

I know God’s Word is never wasted and he tells me that just showing up is enough. That’s all he wants.

Maybe I won’t remember every verse today. Maybe I won’t feel anything in the moment. But I believe every time I read His Word, I am storing it away for later. His truth is being planted deep within me, ready for the day I need it most. The Holy Spirit has a way of bringing Scripture back to our hearts at just the right time. Just when we need it.

So I will keep showing up not because it’s easy but because He is faithful and has always been. No matter how much I’m struggling right now, I do trust that God is working behind the scenes. So every page I turn is an act of faith. Every verse I read is a seed planted. I just have to hang on a bit longer. I have always felt weird asking but Please pray for me.