Moments of "Not Trying"
I’m not accomplishing anything right now. I’m not doing anything to try to be healthier, I’m not running the food pump, I’m not taking any meds, I’m not planning anything with my caregivers or doctors, I’m not following my routine. I’m just lying here listening to a beautiful piece of music. A brief gap in the endless grind of chronic illness.
I hardly ever do this. My routine is so full of "healthy stuff". Im either sleeping or doing something. Not because I feel some kind of pressure from society to be productive, **** that. Rather, because I have to do so many things to not only maintain my health and sanity but also to avoid the possible crises and disasters that lay around every corner with severe ME/CFS.
For example, I have to do a lot of work to keep my stomach from collapsing, like 1 1/2 hours of stomach massage with an electric shiatsu massager everyday. I also can't just pop a handful of pills to take my meds, my stomach would be terribly injured from that which might mean my digestive system not tolerating liquid food from my Jtube anymore and I could wind up back on intravenous nutrition or starve to death. So I have to be very careful to avoid my stomach getting even worse. I can’t even tolerate a drop of plain water in my mouth without hurting my stomach, much less pills in my stomach. Every medication has to be dissolved into 10-20cc of water and put into a syringe by one of my caregivers and I have to inject each one into my jtube or gtube depending on the medication. This procedure takes 30 minutes every time I take meds. But there is a long list of medical hoops I have to jump through just to keep my stomach from completely shutting down.
And there are a lot of other treatments and therapies I have to do to avoid getting worse in one way or another. And which I wouldn’t have to do if I was even a bit healthier.
It feels like the more severe you get with ME/CFS, the more effort it takes to just get by. And ironically, the less energy you have to do so. Simply staying clean to avoid skin infections when you can no longer shower is a Herculean baby wipe effort. When everything is added up, in my current condition there simply isn’t enough time to do nothing.
The tragedy in this is how hard I try to be or get healthier and the reality that I don't get better from any of it. Because there is so little known about ME/CFS that all the things I know to do aren’t that effective. But I still have to do them because it's the best I can do to avoid getting worse. The alternative is to just submit to chaos and literally rot here in my bed until God knows what happens; General worsening of ME/CFS symptoms, infections, sepsis, further imbalances throughout bodily systems, malnutrition, dehydration, starvation, etc.
But it’s still important to stop sometimes, hit pause and just feel alive. Moments like this remind me of my past before illness covered everything in its thick black cloak, soaking into the fibers of everything I do; Into my very existence.
I am not just illness and I am not just recovery and I am not just my health. There’s still a radiant being in here full of love and life. It just doesn’t get to breathe deeply very often.
But occasionally I do BREATHE. And I remember millions of moments like this when I would stop and reflect. My best friend use to call them "Whitney moments", adoringly.
When the two of us were riding Enfield motorcycles > through the Himalayas in India I remember stopping on a bridge over a river and just soaking that moment in - watching the water move through the rocks and along the bank, noticing the trees moving gently, feeling the water in the air after so much dry mountain wind pelting my face. I remember feeling still and calm.
I remember millions of moments like that when I felt like I was exactly where I was supposed to be in that place and in that moment. Everything seemed to just freeze as if I was watching myself in a photograph.
I haven’t felt that in a long time and don’t feel like this is what my life was supposed to be like (none of us do). But sometimes in moments like this when I’m able to hit pause and reflect, my mind does feel like it lines up with the world, if only for a fleeting moment.
Of course now I’m documenting it which ruins it. 🫠 But I’ll return to my pillow and the music after writing a rough draft of this.
And when I get better, I will take these moments back from the world with a vengeance.
Love,
Whitney
Written on Sunday, February 11, 2024
PS. In this image I’m listening to Big Thief - Dragon New Warm Mountain I Believe in You Such a beautiful album 😍
I hardly ever do this. My routine is so full of "healthy stuff". Im either sleeping or doing something. Not because I feel some kind of pressure from society to be productive, **** that. Rather, because I have to do so many things to not only maintain my health and sanity but also to avoid the possible crises and disasters that lay around every corner with severe ME/CFS.
For example, I have to do a lot of work to keep my stomach from collapsing, like 1 1/2 hours of stomach massage with an electric shiatsu massager everyday. I also can't just pop a handful of pills to take my meds, my stomach would be terribly injured from that which might mean my digestive system not tolerating liquid food from my Jtube anymore and I could wind up back on intravenous nutrition or starve to death. So I have to be very careful to avoid my stomach getting even worse. I can’t even tolerate a drop of plain water in my mouth without hurting my stomach, much less pills in my stomach. Every medication has to be dissolved into 10-20cc of water and put into a syringe by one of my caregivers and I have to inject each one into my jtube or gtube depending on the medication. This procedure takes 30 minutes every time I take meds. But there is a long list of medical hoops I have to jump through just to keep my stomach from completely shutting down.
And there are a lot of other treatments and therapies I have to do to avoid getting worse in one way or another. And which I wouldn’t have to do if I was even a bit healthier.
It feels like the more severe you get with ME/CFS, the more effort it takes to just get by. And ironically, the less energy you have to do so. Simply staying clean to avoid skin infections when you can no longer shower is a Herculean baby wipe effort. When everything is added up, in my current condition there simply isn’t enough time to do nothing.
The tragedy in this is how hard I try to be or get healthier and the reality that I don't get better from any of it. Because there is so little known about ME/CFS that all the things I know to do aren’t that effective. But I still have to do them because it's the best I can do to avoid getting worse. The alternative is to just submit to chaos and literally rot here in my bed until God knows what happens; General worsening of ME/CFS symptoms, infections, sepsis, further imbalances throughout bodily systems, malnutrition, dehydration, starvation, etc.
But it’s still important to stop sometimes, hit pause and just feel alive. Moments like this remind me of my past before illness covered everything in its thick black cloak, soaking into the fibers of everything I do; Into my very existence.
I am not just illness and I am not just recovery and I am not just my health. There’s still a radiant being in here full of love and life. It just doesn’t get to breathe deeply very often.
But occasionally I do BREATHE. And I remember millions of moments like this when I would stop and reflect. My best friend use to call them "Whitney moments", adoringly.
When the two of us were riding Enfield motorcycles > through the Himalayas in India I remember stopping on a bridge over a river and just soaking that moment in - watching the water move through the rocks and along the bank, noticing the trees moving gently, feeling the water in the air after so much dry mountain wind pelting my face. I remember feeling still and calm.
I remember millions of moments like that when I felt like I was exactly where I was supposed to be in that place and in that moment. Everything seemed to just freeze as if I was watching myself in a photograph.
I haven’t felt that in a long time and don’t feel like this is what my life was supposed to be like (none of us do). But sometimes in moments like this when I’m able to hit pause and reflect, my mind does feel like it lines up with the world, if only for a fleeting moment.
Of course now I’m documenting it which ruins it. 🫠 But I’ll return to my pillow and the music after writing a rough draft of this.
And when I get better, I will take these moments back from the world with a vengeance.
Love,
Whitney
Written on Sunday, February 11, 2024
PS. In this image I’m listening to Big Thief - Dragon New Warm Mountain I Believe in You Such a beautiful album 😍