Kweeny's Pain Journal's Greatest Hits: Hotel California - Eagles

You know what really sucks?

When simple, everyday tasks are now suddenly huge ordeals you have to get through to say you survived the day. When you need a ton of pills to just begin to function like everyone else.

Things like bathing yourself. In the hospital, bathing was hard. Showering was hard. My first visit had a really nice set up with a tub and shower. The shower stall had a seat you could sit in, and there was a dial to control the temperature at your leisure. To me, that place was the Ritz hotel. They treated me like a fucking Queen up in there, and all my needs were met with kindness as well as teaching me to take care of my damn self. And that is the key for me really. I need to know I am capable of teaching myself coping mechanisms so I can brave the shitstorm that is my body's chemical and neurological imbalances. For my sanity alone, I need to know I can be taught to do simple tasks like bathing without supervision. Sure, for a while I might need help. But eventually I wanna be able to do things on my own despite pain.

Of course I couldn't stay in the "Ritz hotel" forever. Eventually I was locked up in a terrible cell in the ER and then finally in the nut house. I call the nut house visit Hotel California.

It's not really a lovely place. It was a hard place. But it is teaching me to cope better because it is harder and gives more freedom.

Things like showering were ordeals in Hotel California, but at least I had the option of a shower without supervision. The ER cell didn't really even have that. I was lucky I could use the bathroom. At one point I pissed on the floor because they didn't let me out of the white room in time to pee.

That's a humiliating moment for sure.

The ER cell might as well have been completely padded. It was a living hell. The floor was too cold and flared my Raynauds. I had one small padded mat I could lie on, shivering and spasming in a almost constant cycle of pain. No one cared when I screamed, thrashed and cried. No one came to my rescue. I called for all the names of all my packmates at least once, and people like Mephista and Lord Bearington I called out for several times.. No one came. I was alone with my demons.

I was completely isolated with my fear and horrible agony. I thought I was dying.

When I committed myself in Hotel California, I apparently greeted the paramedics naked at my front door. Then when they crossed the threshold, I showed them a note I wrote to my loved ones which I believed detailed my pain cycle and how it was driving me mad.

Everyone else thought I was going to kill myself because I kept saying "I don't want to die" and I kept talking as though I was dying. Because I thought the pain was killing me. I really, honestly thought I was dying.

It had nothing to do with being suicidal.

But in all honesty, to me, I was trying to say I was afraid I really was dying. It was all fear. That's how bad the pain can get. Especially when you have chronic pain on top of dystonia and hallucinations, which I was still suffering from even after I was rehabilitated from the Ritz Hotel of hospitals. I has having a terrible reaction to some of the meds they were putting me on, and having an allergic reaction too. I even OD'ed on my birth control. Who knew you could do that and take too many hormones?

I am not used to kindness, so I don't trust it. Especially when they shove needles into me and other nasty shit.

Hotel California had all the basic needs. We had food, but it was all weird, bland shit. I ate more cookies than I probably should have, because they were one of the few things on my tray that tasted all right. I had to ask for showers, just like in the Ritz hotel (because I cant be trusted to do it alone you see) but this time the showers were evil and I was unable to adjust the temperature. I burned myself more times than I can count, and I had to keep hitting two buttons to get a proper flow of water. You can imagine the damage it did to my body I am sure. I actually caused my toes to go from swollen red to chalk white, which is a bad sign of a nasty flare.

I broke out in a full body rash due to some kind of soap they used on the scrubs, and only after I showed several nurses my fucked up, flaring body did people realize how much pain I was in. My Fibro and Raynauds are real. They live together in a terrible dance that I am constantly trying to learn the moves of so I can remain sane through the pain. And let's not get into my back right now...

So what made me think about all this horrible shit? The fact I just tried to bathe myself like an adult and failed just now. Because my hot water tank was used up and all the fucking hot water is gone. Now I can't bathe. I can't stand for too long in the shower. I just wanted a abson salt bubble bathe to soak my sore legs and back.

But no. Nothing can be fucking simple. Not even a damn bath.

This is my reality. And I wish I could get a fucking break, especially from my loved ones, who have no idea how hard life is for me now. That even simple little tasks like eating, bathing and sleeping are terribly hard. Which is why I am angry and snap sometimes. Why I don't like compromising myself for people's selfishness. And they don't know they are being selfish when they act certain ways. Because they are "sane." They don't have to own every terrible, horrible moment of their lives like they are trying to conquer a mountain. And their pain is way easier to comprehend and comfort than mine is. No one knows how to comfort me, no matter how many times I ask for help or hugs. Every time I open my eyes I am fighting, so I can come off very aggressive at times. Sometimes even passive aggressive unintentionally. I go to bed fighting. I sometimes snap and "bite" with words because damn it, I am in pain and just want a fucking cookie, orgasm and a hug. But that isn't how this pain shit works.

Healing from this won't be easy. Even the orgasms aren't easy. Nothing in my life is easy.

But I don't need brutality right now. My world IS a brutal mess. I just don't know how to ask or deal with showing my bleeding belly to people who I think should be able to see it by now. I mean, I thought I had told people honestly who I was. But maybe I don't know who I am anymore thanks to all this shit. And being small, frightened and exposed is the most terrifying thing imaginable right now.

Because if I show you my belly, I am afraid I will give up fighting.

I can't stop sharking.

But they can't see my pain otherwise. It's not their reality. Their reality is different. Some are freaking out because I talk openly about this shit and it hurts them to read it. They don't realize why I do. That I feel fucking alone with it all...

And it hurts me to LIVE it.

I am a bad ass for trying to bathe. For trying to show up in the game of life. For going to 6 hours of intensive treatment and therapy, like I will be doing today, and for not hiding in my sorrow completely alone yesterday on my mother's birthday. I even got cake with a friend, because damn it, I am a battle Queen and I deserve a fucking treat for dealing with this chronic-shit. With swollen legs and a bad back. With Fibro flares, Raynauds, Bipolar and PTSD so bad I wanna wall up inside my house and never see the light of day again. For coming out of the closet as a Multiple being. For trying to go out in the nice weather and hoping it doesn't make my conditons worse...

Everyday is a struggle now. It shouldn't have to be, but it is. And THAT is my reality. The terrible, brutal truth of it all.

Yeah, yesterday was hard for me. So has been the last 33 years.

And I am not feeling well. Not at all.

I keep getting told I should listen to other people's BRUTAL TRUTHS, but mine are too hard to bear. Wish I could tune my life out. But I don't get that luxury. And it hurts when they abandon me to the pain. It hurts because I'd never do that to them.

EVER.

Sure, I can be an asshole. A right bastard even. But when someone is in pain, I am the first one who will lift you up when you come to me. That's all I was trying to ask for. Because I am fucking terrified too. And I am the one living it.

This is my horrible shitshow of a life. And I need brave mother fuckers to deal with me.