Eye opening. There is so much eye opening to be had really. I wish that I could really open peoples eyes to what I deal with - what my disease is like - how truly jacked up, messed up, twisted and nasty it is. All too often because I'm young and I don't have anything obvious- as my pain psychologist puts it - no amputation, no chemical burn, all my hair is on my head - people assume that I am fine. Ah, but I'm not. I'm waging hand to hand nasty in the trenches combat every second of every day. It's a 24 hour battle for the past 16 years. That's a really long time to fight. That's a long and bloody battle to wage - especially when it's against yourself. To have to fight your own body, to push yourself to not give up, to push yourself to keep going to physical therapy, to keep getting up, to not give in - all the while dealing with the snark of life - it's utterly exhausting.
Winter is never my happy time for me. Well, maybe if I lived somewhere warm and tropical - but until I move to Bali or Australia, it continues to punish me. This winter is grinding and pulverizing me in a fine dust. My bones grind and scream. My joints pop and scream. My skin screams in protest against the offense of the wrong fabric - it takes forever to find the right softness of pajama pants just to bum around the house in. The other night I had to keep the bed side light on due to the fact that I had the sensation that my the lava feeling was so strong and the burning was bad (no surprise there) but in addition, it felt that my arm was just filling up and that my skin was splitting open. I felt that my skin was split open and my tendons were splitting out. It was the worst hellacious sensation I've felt on top of my usual ones. It quite frankly sucked and felt like some sort of horror movie come to life. It was the middle of the night and just felt like, "really? really?". So, yeah. I'm over this whole winter thing. I'm ready for sunshine and warmth. I'm ready for a night of sleep that consists of more than 2.5 hours strung together. When your grand total of sleep is 4 hours...it makes you feel foggy, confused, used up and just defeated.
I'm tired. I'm of feeling the way I feel. I'm tired of people acting like they understand how I feel - newsflash YOU DON'T! Oh, you sprained your wrist - boo hoo, suck it up. You "fill in the blank" - I don't give a flying f**k.
I had a better idea of what I wanted to say in my mind - but as with everything - it fizzles on the way from my brain to my mouth/fingers. Between the pain circuits on overload nonstop and the lack of sleep - I can't cobble together what I want to say, how I feel, what I need to get across. I end up in tears or just wanting to lash out. I hate it. I hate, hate, hate, hate it.
Maybe I'll figure out a better way to think this through. But the pain is just messing with me. It's like having a constant drill in your brain - or having some asshole punching you in the face while your trying to give a speech and come off as pulled together and thoughtful - all the while getting smashed in the face and spitting out teeth and blood. Kind of hard to put the two together, no?
So, eff it. It's just not going to happen today. This post is just going to suck. But, I'm not winning any writing awards here.
Winter is never my happy time for me. Well, maybe if I lived somewhere warm and tropical - but until I move to Bali or Australia, it continues to punish me. This winter is grinding and pulverizing me in a fine dust. My bones grind and scream. My joints pop and scream. My skin screams in protest against the offense of the wrong fabric - it takes forever to find the right softness of pajama pants just to bum around the house in. The other night I had to keep the bed side light on due to the fact that I had the sensation that my the lava feeling was so strong and the burning was bad (no surprise there) but in addition, it felt that my arm was just filling up and that my skin was splitting open. I felt that my skin was split open and my tendons were splitting out. It was the worst hellacious sensation I've felt on top of my usual ones. It quite frankly sucked and felt like some sort of horror movie come to life. It was the middle of the night and just felt like, "really? really?". So, yeah. I'm over this whole winter thing. I'm ready for sunshine and warmth. I'm ready for a night of sleep that consists of more than 2.5 hours strung together. When your grand total of sleep is 4 hours...it makes you feel foggy, confused, used up and just defeated.
I'm tired. I'm of feeling the way I feel. I'm tired of people acting like they understand how I feel - newsflash YOU DON'T! Oh, you sprained your wrist - boo hoo, suck it up. You "fill in the blank" - I don't give a flying f**k.
I had a better idea of what I wanted to say in my mind - but as with everything - it fizzles on the way from my brain to my mouth/fingers. Between the pain circuits on overload nonstop and the lack of sleep - I can't cobble together what I want to say, how I feel, what I need to get across. I end up in tears or just wanting to lash out. I hate it. I hate, hate, hate, hate it.
Maybe I'll figure out a better way to think this through. But the pain is just messing with me. It's like having a constant drill in your brain - or having some asshole punching you in the face while your trying to give a speech and come off as pulled together and thoughtful - all the while getting smashed in the face and spitting out teeth and blood. Kind of hard to put the two together, no?
So, eff it. It's just not going to happen today. This post is just going to suck. But, I'm not winning any writing awards here.
My bones ache, my skin feels cold
And I'm getting so tired and so old
The anger swells in my guts
And I won't feel these slices and cuts
~Open Your Eyes, Snow Patrol
