back pain, back problems, blog, chronic fatigue, chronic fatigue syndrome, Chronic Illness, chronic myofascial pain, chronic pain, emotional pain, goals, healing, health, invisible illness, journal, life, myalgic encephalomyelitis, myofascial pain, myofascial pain syndrome, pain, recovering, spoonies
This month I found out that life isn’t actually supposed to be as hard for me as it’s always been. I thought I was just really bad at normal life. Nope. It turns out I have several chronic illnesses that make normal life hard for me.
I have Myofascial Pain Syndrome, also known as Chronic Myofascial Pain. In layman’s terms, this means that my muscles get angry when I do things. It’s more complex than that, of course, but for everyday life that’s a good enough description. I remember feeling “normal”, vaguely, from when I was a kid, and compared to that healthier state, any work my muscles do now is at least four times as hard for them. In practice, that means that when I bend over once, it’s as hard on my core as doing 4 crunches at the gym would be for a healthy person. And it’s hard without the benefits. I get the difficulty and pain of the movement without any corresponding gain in strength. In fact, it leaves me weaker.
I also have Chronic Fatigue Syndrome, known in most countries as Myalgic Encephalomyelitis, which I doubt you can spell unless you have it. Because why would you want to? Everyone knows or can guess the most famous symptom of this illness: fatigue. What you don’t realize unless you have it is just how unrelenting that fatigue is, and how many other symptoms coincide with it to make your fatigue more than “just tiredness”; when CFS flares up, you’re downright miserable. You ache, you can’t think, your heart races, you drop things, light and noise become physically painful, you get nausea and headaches, and random systems in your body refuse to work right. (It varies from person to person.) It’s like having the flu every day. Every day. Every. Stinking. Day.
These two things together are why I haven’t been posting. I had initially thought I was simply suffering from post-college burnout. But it’s been 8 years since I dropped out of college, and the past few years I found myself getting worse instead of better. I stopped leaving the house, as even getting dressed and going out to feed the dogs became too physically draining. You don’t know tired unless you’ve had to psych yourself up to take a shower and failed, repeatedly, for more than a week. My cognitive function was getting so bad that I got scared that I was getting Alzheimer’s. I was relieved when I discovered there was a name for what was wrong with me, and that it wasn’t “all in my head” and that I’m not as lazy as I’ve always been led to believe I was.
Now that I know what’s wrong with me, I feel a sense of freedom and hope that I haven’t felt in years. It’s OKAY now when I can’t do something. Saying “I can’t” is no longer something to be ashamed of. Saying “I can’t” means I’m choosing to take care of myself so that someday in the future, I CAN.
Of course that means that, right now, I can do very little. Oh sure, I could push through and fight on and all those other wonderful, heroic-sounding things people with chronic illnesses do every day of their lives. But why? Isn’t that what got me here in the first place? The cycle of chronic illness is one of pushing and crashing, over and over again. I want to break that cycle, and that means no pushing. It means learning to listen to my body BEFORE it falls apart, and learning what it needs in order to put itself back together. I believe that my body can indeed heal itself, but I also believe that I must treat it very, very carefully for a long time in order for that to happen. I also believe that western medicine is not often very helpful in this regard. I don’t want to mask my symptoms; they are there for a reason. I want to eliminate the CAUSE of those symptoms. So for the foreseeable future, that will be my journey.
I’ll post when I can, but no guarantees about when or what. 🙂
If you are a fellow spoonie (and if you are, you’ll know what that means), I wish you all the best in your own journey, and please feel free to get in touch with me here or on Instagram (@mrsprettyontopthefirst). Hugs and spoons to you!
If life has been hard for you and you don’t know why, I encourage you to ask questions and find out. Your body may be begging you to slow down and pay attention. Don’t ignore it. Don’t let doctors tell you it’s all in your head or you’re just getting old or it’s “just” (a) or (b) or (c). Find someone who will listen, and if you can’t, then find the answers yourself. I wish you all the best.
And if you are healthy, or think you are, please do yourself a favor and listen to your body so you can stay that way!
With love from The Novel Faery ❤