I’m working on empty. I have been for weeks now. Years, really. But the last few months have been especially hard. They’re not sure why or what is going on, whether it’s a flare or a relapse or Judgement Day approaching. But I’m broken.
I’ve been unable to work since first getting ill, but at least have felt like my life was having some meaningful impact. Now? Merely existing, and if anything just strain on those who love me. And I don’t mean that in a depressive way. Just an observation. I’m taking far more from my family than I can give in return. It’s hard on me, and it’s even harder on them. They try to help just as I try to help. Team work – family work.
But that doesn’t make it any easier.
It’s very dull being able to do sweet sod all. I spend a lot of time alternating between sleeping in bed… and sleeping on the sofa. The variety of it! Sometimes it is a wonderful world.
There’s a fun little game I end up playing quite frequently right now, called “how much medication will stop the pain for a short while?”. The short answer is nothing. Nothing stops the pain. I much more accurate question is “what do I need to take so I can shut down enough so I stop thinking about it”. Normally this is a combination of things. Though when I say that what I mean is, normally this is a combination of everything I have available to me because nothing ever stops the pain.
That’s a hard concept to grasp if you’re healthy. But I am in pain, every second, of every day. When I’m laughing, when I’m crying, when I’ve made it out, when I’ve had to stay in, hell, when I’m having sex or having a wee! In every photo you see of me having a lovely time, I am in agony.
And yet I keep going, because that’s what you have to do. There is no refreshing sleep it period of time that makes it go away. And normally I can manage some level of function, but right now, I have nothing. I haven’t left the house for anything other than a school run or a doctors appointment in what feels like forever. I have Cripple Cabin Fever. But I have no choice, because in between those times, Little Crafter needs me, and I spend every moment resting to keep myself functioning for the next time. Because unlike a ‘normal’ person, who might feel a bit knackered after a bad nights sleep or a few busy days, I never refresh. The part of my brain that is supposed to have that refresh, on / off, cycle, is broken, and I am stuck in ‘on’ mode, even throughout sleep, and so am never refreshed.
But you don’t have the option to just stop. You have to keep going, relying heavily on absolutely everyone to absolutely everything, because I’m absolutely broken.
Now… Where shall I sleep tonight?