Why did I stand up again? What did I need to do?
Pain and fatigue are two things I have learnt to live with over the last 23 years. Sometimes better than others. But when did chronic pain start affecting my brain? And why?
I’m used to choosing my seat in a movie theatre based on its closeness to the aisle ensuring I can stretch my legs when needed and still stand when the movie is over. I am used to falling asleep halfway through the movie and waking up just as the credits roll leaving me wondering how Matt Damon managed to survive another action scene without a scratch to beautiful his face. Not being able to remember Matt Damon’s name or the word ‘survive’ as I attempt to talk about the movie afterwards however, that I am not used to. Or I should say, I was not used to.
Chronic pain has shaped a lot of my life. In the main, I’ve been lucky. Yes, pain has stopped me from doing certain things. But generally I’ve been able to come up with workarounds. Coming up with an example of any one of the crazy amount of workarounds that have become embedded in my life? That I cannot do for you at the moment. You see, fibro fog has struck again.
Just when you think everything’s going along nicely. BAM! You can’t remember the word nicely. “You know… when something’s… not…. bad”, you stammer at your friend, beads of desperation dripping down your face.
I first noticed something odd was happening about 2 years ago. I’d be standing in a classroom full of students, one would ask a question and …. that’s right, NOTHING. My mind would be blank. Or I’d know the answer but finding the words to communicate it…. NADA. Or I’d be mid-sentence and all of a sudden …. ZIP, ZERO, ZILCH.
But it’s not just words that fibro fog attacks. Oh no. It’s your memory, your ability to concentrate, to focus when someone is talking. It’s the feeling that your brain is completely and utterly encompassed in the thickest fog you’ve ever seen. Thinking uses too much energy. Just being uses too much energy.
I don’t know what I thought was happening at the time. I don’t even know if I gave the episodes much of a second thought. It wasn’t until later that year when my entire body decided enough was enough, or as I like to call it, the Great Shutdown of 2013, that the doctors started asking questions that made me reflect on these episodes and realise they were not normal. Not for me. When I was a lawyer I’d handle over a hundred matters of my own. At any given time, you could ask me a question and without hesitating I’d know the history of the matter, what actions had been taken, every phone call and email I’d been a party to, what deadlines were in place…. Let’s just say, I had that shit covered.
Today? Today I can’t even remember entire conversations with friends. I know that’s normal for some people. Everyone has that friend who tells the same stories over and over again. You sit there wondering, is it rude to blurt out “I know, you’ve already told me”. But that’s not me. At least, it wasn’t me. I was the person who got angry that you didn’t remember something I told you. I was the person who couldn’t understand how someone could possibly forget a date they had set, a statement they had made. Heck, I would sit bewildered at how a person could forget an off the cuff remark they made while drinking. That just wasn’t me. My memory was solid. Was.
Then one day my pain decided enough was enough. Come one lady, who do you think you are. We started on your jaw. We infiltrated your knees. You tried surgery after surgery to fix those babies. And did that work? Of course not! Because we’re stronger than you. We’re pain! We’ve basically conquered every joint in your body. But you haven’t seen anything yet. Oh no, the rest was just a warm up. Now, now we’re coming for the one body party you thought we could never touch. That’s right. Your brain!! Bahahahahaha!!!!
Okay so perhaps I’m being a little over dramatic. And for those keeping tabs at home, yes know that pain actually originates in the brain. In fact I wrote a little something about it right here. The thing is, there have been times when my brain was the only thing I had going for me. Or thought I did. When parts of your body give out on you and stop you from being physical, your brain is still there. Allowing you to be creative or academic. Helping to keep you entertained, intrigued, hopeful even. When the Great Shutdown of 2013 occurred and I thought my entire body had given up on me, it felt like I was simply a brain inside a body that no longer worked.
My brain has been the one thing I thought I could always rely on regardless of what the rest of my body was doing. If I no longer have that. What do I have?
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PS This post has taken what feels like a lifetime to write. Fibro fog will do that to you.