Every morning, I am dragged out of dreamland by Pain. It’s got quite a dark sense of humor and tends to get a kick out of digging its claws into my right hip. Gently at first, until it’s sadistic side kicks in and it attempts to rip my limb from it’s joint. At least, that’s what it feels like it’s doing to me.
I slowly roll over, open my eyes and look it square in the eye. Ok Pain. I’m up. Let’s play.
I escape my cocoon, breathing slowly and deeply as I try to maintain the slight sweat which has built up from the claws in my hip. It takes my breath away as I stand up and kind of waddle to the bathroom. I wipe my face with a cold cloth despite my body shivering.
Off to the kitchen, kettle on. What happened to my boundaries of “Do not disturb until after the morning coffee?”. Out come my weapons: 3ml Morphine and 2 Paracetomol down the hatch. It’s game time Pain. But first coffee…
We sit together in a kind of stand-off. I sip my coffee, Pain just lingers. This is definitely the longest 30 minutes of my day. But as weapons take hold, Pain fades into the shadows. It’s never completely gone though and it likes to remind me of it’s presence with subtle jabs when I move, and playing with my right leg as if it were a balloon.
This is all tolerable for me really and I actually think Pain is quite lonely. So I just have to keep playing its game. After about 3 hours, Pain gets bored and starts jabbing harder, so I make sure that my weapons are fully loaded and down the hatch every 3-4 hours. Now this works well if I’m home, but takes some planning if I need to go out for whatever reason. Pain refuses to stay at home, and also likes to remind me, with even harder jabs, that I’m not meant to be out and walking around. It’s almost as though Pain is my friend too. It always reminds me that I am not invincible, and that I need to look after myself first.
I have pretty much mastered the day time play, but the nights are a bit more tricky. The demon loves the night. Its sadistic sense of humor really gets a kick out of this one. I need at least 8 hours sleep a night to be able to function properly, so waking up every 3-4 hours is just not an option. So I’ve had to figure a way to get my weapons to work longer and harder so that I can get a good night’s rest.
Lock and load for the night battle: This starts at 18:00 with Warfarin to deal with the DVT in the ballooning leg. At 19:00, I mix myself a meal replacement shake to make sure that I have full tummy going to bed and drop 2 paracetamol. Half an hour later, I take 7ml Morphine, and half an hour later, 2 Trepiline which are slow release pain killers with a sedative effect.
Now I just want to clarify something with all of you: Morphine is not fun. It is not nice to feel foggy and have your senses on high. During the day when the doses are small, it’s manageable. But this night time dose is just awful.
So after kitting up with these weapons, I climb back into my cocoon. It doesn’t take long before I’m drifting off into a deep sleep, praying that Pain will allow me these extra hours of rest before we battle once again in the morning.