You wake up one day and immediately regret doing so. You don’t know what’s happening, because for some reason you can’t even lift your head up. ‘I don’t remember drinking last night’ – you think – ‘Must have been a hell of a party if I don’t even remember it’. Unfortunately, you only wish it was booze because at least you’d know it will go away by tomorrow. The feeling you just have woken up with might last for few hours or few days and you’ll never know for sure until it’s gone. But be sure – oh, it will be back.
Like I’ve previously mentioned, I’ve been dealing with Fibromyalgia for about 15 years. That is 15 years of feeling like crap. 15 long years of not being able to enjoy and perform every day activities, leisure and pleasure time, not being capable of getting to the bathroom on my own feet. Yes. My husband has carried me to the bathroom on multiple occasions. He helped me take off my clothes, put my bra on, wash my face and even put a moisturizer on it. Before he came into my life, I was alone with this thing, eating me up. Not really being alone – I had friends and family around of course. But no one knew what I was going through and I couldn’t even bare to start explaining what it was. Mostly, cause I didn’t know it myself. And they probably wouldn’t understand, because only recently Fibromyalgia has been finally recognized as a real disease. There’s a lot of stigma around it though, it’s still often considered as an imaginary disorder. You’re tired? – simply sit down and rest. Except it doesn’t work like that and if you’re reading it, you’ve probably experienced that yourself. It’s a pain beyond imagination, so hard to explain it’s hard to compare to anything. But I’ll give it a try: imagine you spend an entire day at the gym. You go home, go to bed. You wake up the next day. And uh-oh! Now try to multiply that pain by 10, let’s say. And now try to imagine you live with that pain every effing single day. As opposed to the gym muscle sore, it won’t go away after 2 days. It will just get less or more intense, depending on the day. Some days you’ll be able to get out of bed and even put your bra on without grunting. Other days, you won’t be even able to lift your arm, not mentioning holding a glass – an empty one. Or hold your baby… I could write a lot about how it feels, what it feels like and all those different levels and types of pain and symptoms you get from having Fibro. But that’s not the point here. Each of us goes through that in their own way, having their own, unique ways of dealing with it.
I remember having flare ups so severe, that I wasn’t even able to speak, I just kept mumbling, tripping over my tongue. And that was one of the scariest things in my life, the fear of losing the ability to speak. Even though it turned out only to be temporary and would always go away as the flare up had subsided. But I was terrified. Trapped in the body that was acting against me. And even worse – my brain giving up at the same time. The freaking brain f(r)og! For that reason I’m really glad college years are far behind me and back then the Fibro wasn’t my every day companion yet. I miss college years for other reasons though – especially the energy and the silhouette, duh! But back to the brain frog – for many years now I’ve been having a tremendously hard time to learn anything new. I can’t focus enough and even when I manage to get the right level of concentration, my brain instead of sponging the knowledge, keeps bouncing it off like it was a rubber ball. Extremely annoying and frustrating. It feels like your brain is playing tennis with you. The ball, which is the new data you’re trying to acquire, just keeps bouncing back and forth without landing a mark and scoring. So you read, and you read, and you read a ton of things. And at the end the only thing you remember is possibly a title and maaayyybe an author – good luck with that, I struggle almost every time. It’s very similar to all those ADD/ADHD jokes you see all over the Internet, my favorite being: Ask me about my attention deficit disorder. Or pie or my cat. A dog. I have a bike. Do you like TV? I saw a rock. Hi! … I’m not making fun of anyone, because it’s simply how I feel most of the time. Because I get so frustrated by not being able to understand what the hell I’m reading right now, that my mind just drifts away to another dimension, where it’s happier for the time being.
I used to be smarter. I used to read things beyond my comprehension just for shits and giggles, just because I could. My English used to be much better, especially speech wise. My accent was better. Now, don’t get me wrong, I don’t’ speak with a typical strong Polish accent, but every now and then my mind slips and the words coming out of my mouth sound way off. What’s frustrating is that I know exactly how to pronounce things. I can speak with a British accent if I try. I’m great in singing with British accent, especially the songs originally sang by Brits. But as the years progress, it feels like my brain and my tongue are slowly separating and will soon divorce for good (such a waste, they’ve been quite a couple). And that will be scary, I can’t even imagine what I would sound like then! So to prevent that, I read. And I read. And I read. And I try to learn something new. But we’re back to square one and I wind up not remembering a thing from what I’ve just read.
I’ve only started this blog a little over a week ago and I’m aware I don’t have a big public yet, but if you happen to stop by and read it, please, let me know what you think. If you’re in the same boat, as I am, share your story with me. Do you have any special ways of dealing with the every day struggle? I’m really curious. I don’t personally know anyone with Fibro. Or maybe I do, but they haven’t shared it with me thinking I wouldn’t understand? Not knowing that I suffer just the same?
I’m not a doctor, hence this is not a medical guide. If you’re looking for such, you won’t find it here. This is a layman’s blog, for laymen and is simply my way of self medicating my weary brain and exhausted body. Also, if you’re taking your condition too seriously, you might not find this piece helpful, as I believe I have a sense of humor and such I’ll be using here. Not that your circumstance is not serious, because we both know it is and it’s ruining your life on many levels. But you might feel better finding out you’re not the only person in the world having trouble holding a teaspoon, putting lotion on your hands or bending to put your shoes on. Since I’m one of those people, I’ve decided to deal with its absurdity and approach it like a joke – laugh at it, just because I still can. It is a funny name though – Fibromyalgia, isn’t it…?
What The Fibro?! 