In the more than a decade that I’ve been sick, I’ve experienced just about every level of my illness. At various times, I’ve been near death. At other times, I’ve been well enough to function almost like a healthy person. I’ve also been stuck in the middle, as I am now, wondering what will happen next. What will this illness throw at me now?
As you may know, my health has been improving over the last couple years. Now I can walk again (though not far, usually just to the bathroom), and I can speak pretty much like a healthy person (except for when I’m exhausted and speaking is just too much).
Now that my health is trending upward, suddenly I find myself looking back on the course of my illness, amazed at what a crazy ride it has been. In fact, that is what I was doing before writing this post.
I was lying on a lounge chair outside, listening to the wind whip through the tree branches, watching humming birds dive-bomb each other from the cables overhead. In that moment, I thought, damn this is crazy. Not long ago I was too sick to experience any of this.
I felt tremendously grateful for all of the little things that made up the world around me, even the sounds of sirens and cars off in the distance. I was grateful for the parts of my life that were still there — the people I love, the places I could go, the things I could do for myself. My reflection wasn’t all gratitude, though. I was also mourning the parts of my life that are now and perhaps forever will be gone.
It’s such a weird thing — this illness. The way it has shaped my life is stranger and more complex than any work of fiction that I could ever write. And as wild and unpredictable as my illness has been, there is one part of it that has remained constant — the way it makes life difficult, regardless of the stage of the illness.
It’s hard to compare the worst days of my illness with how difficult life was when I was what some people call ”functioning sick.” I was able to work and care for myself, which was actually more difficult in some ways. When I was bedridden, it was physically impossible for me to work or care for myself. And when I was functioning sick, I often pushed myself to do too much because I was, well, functioning. Both stages of my illness were excruciatingly difficult.
The reason? Well, besides the fact that this illness is a parasite that leeches much of the fun and enjoyment out of life, the truth is I haven’t made it easy on myself. I often seem to take as much as my body and the illness will give me. If I could, I’d be off hiking across the country or running an Ironman or doing deadlifts until I passed out.
When it comes to being active and productive in life, no part of me is or has ever been interested in moderation. The downside to this is that, no matter how sick or healthy I am, I’m almost always utterly exhausted. It’s just that now I get exhausted washing my hands instead of deadlifting three times my body weight.
The upside, however, is I get shit done. I enjoy the fuck out of life, no matter how sick I am. I still hate life at times, sure, but boy do I love living. Even when it’s hard. Even when my body hurts so bad that I want to cry (and often do). Why? Because somewhere in all of that pain and exhaustion is something truly blissful, something that makes the juice worth the squeeze, if you will.
Regardless of which stage of illness you are in, it may be hard to find this blissful feeling. But when it’s there, it’s there. And damn is it good, like a cold drink on a hot day. The best part — the truly transcendent thing about it — is that it makes all the stages of this illness irrelevant. Because if you can find enjoyment in some part, any part of living with a chronic illness, then you have won the battle.
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There isn’t one of us who hasn’t lost most of what we value in life – and is still wondering whether it will ever get much better.
Even with hope – the new NICE Guidelines, research money going to at least long covid – which may help those with other post-viral syndromes like ME/CFS – we STILL face, on top of one of the worst diseases ever, stigma, disbelief, and a massive lack of help.
Keep plugging away – but take it easy. You want to be in the best possible shape when the cavalry arrives.
“Because somewhere in all of that pain and exhaustion is something truly blissful,” So true. The other day, my husband was driving us to a coffeehouse (which was, in itself, a pretty incredible thing). I was amazed at all the trees along the way, how each one was different, and the beautiful architecture of their branches. Before I got ME, I never would have noticed this, much less found it so wondrous.
It really is fascinating how illness makes you notice and appreciate things you never did before. Life slows way and I guess sometimes that’s not a bad thing. Just wish it didn’t come with all the bad stuff.
Thank you! Needed to hear this today/ appreciate your perspective and your willingness to share.
Thanks Traci! Big hugs to you!