One thing I hear frequently when people hear I have fibromyalgia, is “Oh I know someone who has that, sounds really painful.” And yes, to be blunt, it is. But it isn’t all about pain. I thought I’d just try my very best to explain just what fibromyalgia feels like, to me.
It’s tiredness. Not like “oh my baby had three hours sleep last night” tiredness. Although that’s crappy too. This is a tiredness that cannot be sated. No matter how much you try to sleep, it’s a total fatigue that cannot be repair by sleep alone. It’s a mental, physical, emotional, all encompassing exhaustion.
It’s all of your normal feelings, but amplified. Imagine a guitar amplifier. You have the volume set to level 1, and you strum, and it makes a noise that is pleasant, bearable to listen to, and fades in a normal amount of time. Turn the amplifier up to MAX volume and strum again. You did the same thing, and yet it’s significantly louder (painfully loud), it is very unpleasant to listen to, and it take much longer to fade back to nothing. Now compare this to fibromyalgia. I suffer from allodynia, a pain response to a non painful stimulus, usually the skin. So someone stroking my skin feels like someone cutting me with razor blades, and it lingers like the skin is bruised, even with a gentle touch. Nothing was done differently, but my body is “amplified” and so interprets the sensation as painful when it actually isn’t.
It’s feeling every single microscopic movement in your body. I feel when I ovulate. I feel when my food hits every single part of my digestive tract. I can tell you where my faeces is within my small/large intestines at any given moment, based on where the cramp is.
It’s starting a sentence, and forgetting the words. They call it “Fibro fog” and nobody really seems to know what it is or why it happens, but I often forget words, lose my train of thought, or read the same page seven times before giving up because I’m simply not taking any meaning from it.
It’s psychologically destructive. I am frequently anxious of how people perceive me because I’ve mastered the brave face. I am often depressed because I wanted more from my life. I feel guilty for my family; for my son, because I feel I don’t do enough with him; for my partner, because he is often left looking after me when I can’t look after myself. Neither of them are unhappy with their lives, or so they tell me, but I feel like a burden all the same.
And lastly, it’s like having a toxic friend, or an abusive narcissist parent who follows you everywhere. Fibromyalgia tells me what I can and can’t do, where I can go, how long I can stay out. And it punishes me for going against it’s ever-changing rules. It makes everything you do become “all about them” and not about you or what you want or how you feel. Everything in my life is determined by this dark passenger.
To finish by saying “Fibro sucks” really just doesn’t cut it. I will have this for life and yet, no matter how much pain I am in or how tired I become, it won’t kill me. Ok, great, I’m not living on borrowed time. But don’t ever tell me that is a blessing. Because it really, really is not.