Pain Management: Thankfulness

I have learned much since being diagnosed with both mental and physical ailments. I have had some hard, painful lessons, and some inspiring ones. I know I have become stronger, in a way I always wanted to be but couldn't. It's hard to be truly strong when you are out of control of your own life. I honor and respect old me for trying to do it all alone, but that version of me wasn't ready to heal and move on. Riding out a bipolar swing is like trying to ride a stallion horse. It's near to impossible. But I tried, and though I failed many times, I still managed to do better than when I was on the streets or living at home in the "crack house."

But my many experiences, especially this year, have shown me I do have real strength. Not just toughness and pride. I came out of a traumatic spiral and I am still me. In fact, I think I am a better me. I went through hell in that hospital, and for a bit I lashed out because of it. The people who understood just how difficult it was for me to find a new normal, stuck around. Those who didn't...well, they couldn't understand. You have have a full blown psychotic break to understand what I went through earlier this year. I forgive them. And I know I don't need them for the future.

Most of all I forgive myself. How was I expected to be able to handle emotional storms when I just got on medication for a life-long mental illness I didn't know I had? How was I expected to be the Kweeny they loved when they were now different to my eyes? Plus, I was facing my own demons down. Every hospital visit, every therapy session, every time someone told me, "Don't stop taking your pills." On top of all this, I was trying to figure out why I was in so much pain and what was wrong with me. And I was struggling with doctors who didn't believe me, people I had to fight with to get to see a specialist who DID diagnose me. I had lot on my plate. And somehow I came out of it more whole than I have ever been.

I am truly thankful that chronic illness and metal illness forced me to learn to cope better. I don't sweat the small stuff now. If I have a flare up either emotionally or physically, I use my new support network. I talk to my husband. Somehow we are even closer still, because we are aware of each others issues more. He is amazing and cares for me daily. I in turn, do the same. Hell, he's seen me on bad days still attempt to feed him, because it means a lot to me to do so. It's my way of thanking him daily. 

But learning how to self care has been a hard but rewarding experience. I am getting better, everyday with coping. I know pain is a constant in my life, but I try to limit how much power pain has over me. I do whatever I need to so I can find my calm in the storm. I have even started doing things I consider "comforts" more. For example: I have a stack of tea. I love tea, but I never really make it for myself. I just horde it in my cupboard like it will not be replenished otherwise. This is a negative mindset for me. Tea reminds me of my grandfather. We had tea all the time at his house, and I miss him terribly. I think I was hoarding the tea because I thought if it was gone, he would be gone too.

Now I make tea for myself almost daily. Especially teas friends have given me. I smell it, I savor those beautiful moments with my friend and my grandpa, and I honor myself by drinking it.

It's a little thing, but it helps.

I am moving into a new stage in my life. I can feel it. I am super appreciative of the moments I can share with my friends and packmates. Every moment is precious now. Also, I am more mellow than I have ever been, and I am more at peace. There are still things that haunt me, as some shadows linger longer than others, but I am strong enough to say I need help when they appear. I am the warrior of my own heart. Because sometimes, you need to take up the sword and do your own cutting.

Pain Journal: Mental Illness and Chronic Pain

Being Bipolar and suffering from Chronic Pain is like living life on Hard Mode. In video games, I actually tend to avoid Hard Mode, because I get super frustrated. I play my video games much more carefully than I play the game of life.

It's been this way since I was a child. As far back as I can remember, I have time and time again encountered Hard Mode. It reminds me of a piece I wrote for creative writing class in college. We were supposed to write about our earliest memory. A lot of the students in my class wrote lovely things, like the taste of their first ice cream cone, playing with their families, innocent things like that.
Mine was different.

My first memory is of blood in my mouth from my mother punching me in the face.

If I am honest with myself, I have been in pain ever since that day. I just didn't think my body would betray me like my mind clearly did. I had convinced myself I was unstoppable.

I have to take a small but substantial amount of drugs. Every day. No exception. And because of the side effects, I can't do things like drink booze anymore. And I enjoyed drinking. Sure, I wasn't really a big drinker, but I liked having the option. I really, really hate when my options are narrowed and it wasn't done by my choosing. One thing people don't realize about me is how much of a control freak I really am. It became more evident once I went on the lithium and seraquoil. I started to realize how much I need to control the world around me. Even more so now that I have to manage pain. Being a control freak doesn't mean you are good at it though. I do not feel I am good at keeping my cool, or organizing things. I can't remember things I did maybe an hour ago, but I remember what my first taste of blood in my mouth feels like. I remember horrible things. Lots of them. If I tried to write a novel about my life, I don't think I can make myself into a convincing character.

No one would believe the shit I've been though.

The drugs however, have a side effect that isn't written on the label. It's one that is specific to me, because of my mental and physical ailments. Lithium numbs me. Because it soothes my mind and makes it so I am more able to be the control freak I didn't know was in me, I feel my pain from Fibro and Reynauds more clearly. Which means everything hurts more, and I can't react therapeutically to the pain.

Like for example, last night I had a hard talk about my mother and her suicide with my husband. I had a realization that maybe my mother was just done with trying to fight. I've had many theories over the years as to what drove her over the edge. It seems to be fresh in my mind lately because of my stint in the mental hospital. I really felt like dying at one point during my breakdown. I even wrote a note. To the average onlooker, it was a suicide note. To me, it was a good bye note because I thought the pain my body would kill me.

My theory about my mom this time was that she was just finished. She hurt too much. She just wanted to not hurt anymore. I knew she suffered from a chronic affliction, because the autopsy on her body showed growth on her spine. I always thought the quack doctor she went to was filling her head with shit to give her more pills and cut her up. She had scars all over her body from this butcher. I was convinced he was making her "feel" sick.
But she was sick. Badly.

I don't make excuses when I say these things about her. I wont tell you in some romantic way that my mother was suffering so it's okay what she did. I'm not a fool. She was an abusive, conniving bitch and nothing could change that. I know because I have experienced both pain and madness in equal measure, and it pushed me over the edge a few times.

I'm still haunted by my experience in Feb. The smell of hospitals, the constant needles. The bad drug reactions that made me trapped in my body, or completely flip my lid. Watching the clock while I writhed in agony. The stripping me down to a basic, broken thing when they locked me in the drunk tank. Watching my Reynauds flare up and loosing complete sensation in my toes and fingertips. The scalding hot showers that I couldn't control to give me a temperature that wont flare me up. The paper gowns. Cold floors and colder nurses. So many coloring books as my only solace while the other crazy folks scream and thrash themselves against the walls. Writing mean letters to people I thought did me wrong in calk in the small veranda.

I faced my mother's ghost in there in a way I have never done before. There was no pretty ritual to make it easier to swallow, no this wasn't the pretty way of facing demons. I went nuts and there she was, riding my skin. Right beside all my alters. Us and her.

I realized then if I didn't do something, I would never come back as Kweeny. I wasn't going to go down like that. Not for anyone, especially that bitch who birthed me.

So now I do this balancing act, every day, to be sane, whole, and in as little pain as I can possibly find. I take my pills, not because I like them, and not because I am brainwashed to do so by asshole doctors. I -know- I need them. They give me control back. I just loose some sensations in the process. Because nothing comes without a price.

And my ability to cry, wail and scream at the moon is now limited. My libido is gone, making me asexual, which is the weirdest shit to me. But maybe I need other things more right now. Like true intimacy, comfort and support. Maybe having my emotions dialed down is exactly what I need. My limits make other things stronger.

And maybe, this is the way things should be.

Halloween and Horror Keeps Me Whole

This is my month.

I am the Kweenybeast of Halloween. I can feel the change in the wind before stores have Halloween Stuff. When the weather drops, so does my ability to fend of flares, but October is my happy place. So I don't dwell on the flares ups to come. I know they will happen, I know I wont be able to larp come December, and I already had to bow out from a cool Halloween event because of rain and cold.

The cold is my bane, but Halloween is my anti-depressant.

I have had rough moments so far during this month, but it hasn't crippled me mentally. I won't allow it. This is the month I give to my inner child. My feral wolf pup self who I protected from horrible abuse growning up. I locked her away but for her own good. So she would never have to remember the horrors I have seen. So she could stay innocent.

Because showing any weakness where I came from, meant I could be killed for it. Literally. If the vultures smelled blood in the water, even a little, they would take me down. Hell they took advantage of what they could see. Like when I hit puberty and all of my mothers addict friends noticed.

And that was the first time I hated my gender.

Over time though, you realize even that part of your psyche isn't whole. Even she was touched by tragedy, but we made her a promise. We'd never let anyone hurt her again, and we certainty would let her have a second childhood. A way better one, full of monsters and Halloween treats.

So for a month I become childlike. I giggle in haunted cornmazes when monsters jump out at me. I read up on the best fake blood recipes. I watch horror movie after horror movie until I can't keep my eyes open. I drool over Halloween candies and eat Count Chocula, and I buy myself as much awesome horror and Halloween things as I can get my hands on. This is the best time to buy me presents. This is the kind of shit that makes my heart sing. 

I am a monster. But I am a happy one.

Last year I was happy too around this time, but I can feel that it's different with me on the meds. I am not so...manic about it. It's more like an even pace of happiness instead of an up and down swing. Even when I am in a bad flare up, I see a pumpkin or monster and I just feel my mind soothed. This shit really makes me happy. I really just feel the most...complete when I am being a big horror nerd. It's not like I don't do this stuff all year round, but I pace it out more during the rest of the year. This month I drown in it. I devour it. I gorge myself on Halloween and horror shit until I burst. 

 Because it's my happy place. 

So Little Q, Happy Halloween! Thank you for seeing beauty in the darkness. Keep your fuzzy wolfie self shining! 

Rebuilding The Beast

I know I've said it before, but I will say it again, my hubby is a rockstar.

Today was the eclipse and maybe that had something to do with it. Or maybe it was the fact we are both super sore and tired of the current way of things. Literally. My husband has back issues and so do I. Ever since I injured myself, my back has never been the same. And coming out of the hospital and looking at all the debt collectors who want money for those visits, has really crushed me emotionally. I can't live like this. My doctors say I am too fat. I am over 200 pounds and I am a tiny person. I am only 5 foot 3. This is not good for me, and not just because of the Fibro and other Chronic shit. I know some of my weight gain is the drugs they put me on, but not all of it. And I have been eating for comfort a lot. Because it is one of the few vices I gave myself excuses for.

No more.

I told my husband I wanted to hurt less. That I should change my diet like my doctors say. That I need to exercise more, but carefully, so I don't cause more injuries. He agreed, and said he should do it too because he feels like shit as well. He wants to be stronger for LARPING, and so do I. I want to be able to do fights more. I like fighting. I have always been a fighter. I don't feel defeated anymore. I feel angry. And I am going to use that rage to get healthier.

It helps that my hubby wants to do this too though. Having a workout buddy who can bitch you out when you need it and wipe your tears is essential. It's going to suck a lot to start with. We are gonna slowly phase out junk food from our house and replace it with veggies and protein. We have decided a routine we are going to try that will help build strength and muscle, then we will go into endurance. I told him my pace will be slow to start, and I am gonna get mad a lot. Especially at myself when I cant do what I think I should be able to do. I know he will support me and keep me inspired to keep going. He knows me. And I will do the same for him.

I think what made this more real was when I admitted to myself that this is just another part of my life. I won't allow all this chronic illness shit to dictate who I am. I am a fucking bad ass. And I will be a bad ass again. This was a minor setback. My entire life up till now has been a hard fucking road, so it's no different that my damn mid 30's be hard as well. This is just how it is, and like my past, I will overcome again and prove them all fucking wrong.

I am better than chronic illness. I'm a Kweenybeast. And I will go out like a fucking beast.

Pain Journal: Day To Day Sacrifices

Everything takes sacrifice. I have known this my whole life. But with everything that has happened this year, I have also learned sometimes you don't get to choose when you have to sacrifice or not. I don't live in the delusion anymore that fate exists or that I have complete free will. Loosing these comfortable illusions have made me wiser to what really matters.

The day to day choices we make to either improve ourselves or not is what matters. Yes, some days are going to be harder than others. Some days I am going to just feel like shit, emotionally, or physically. Some days I have to struggle to just get out of bed, and that will be my little victory of the day. Sometimes all I can have is words to comfort me, because touching me or anything else of that nature is going to cause more harm then good. Sometimes I go into an event knowing I will hurt later for it. These and many other things, are the little sacrifices I do to continue to exist in this world.

It can be a real challenge. I spent the weekend having a blast with friends, playing monsters, refugees and salvagers in the LARP. I had fun. But on Sunday when I woke up I knew even the little I did costed me, and I was going to pay for it probably all of next week. I am hoping I feel better soon, but I don't count on it. I do what I can to ease my pain until it reaches a point I can do creative work through it. When it's really bad though, all I can do is rest and try to distract my mind from things.

But I knew what I was getting into. I didn't realize how hard NPCing is on me though, because this LARP I went to is different than the others. It's one of my favorites for sure, but I don't know if I can NPC for it anymore. It's so high combat that I couldn't avoid being in combat, even when I was supposed to be a non-com character. It happened twice, and I do enjoy battle, but I can't do as much of it anymore. Constant battle is not good for me. I end up hurting myself later to a high degree. My heart wants to be in combats. I always give my characters the option to fight for that reason. But an NPC is not a character. I have to do what is good for the story, not what is good for my personal ambitions.

I need to be more assertive too with my needs. I know I try to not burden people, I worry way too much about that. I am afraid of pushing people away, which I have done earlier this year. So I struggle with what I need, and what others want from me, and if I can't live up to their expectations I feel shattered. Every time. Sometimes I think I might be assuming they expect things from me, but I can't tell. I am afraid to ask. I am afraid of letting myself down too. My husband says I have a fear of success and that is holding me back. But how can I be successful when I can barely keep up with the world anymore? When my pain holds me back? When I need pills to just be "balanced" so my mania doesn't destroy me?

My heart is heavy, but I am still here. Those of you who love me and worry that you could loose me to the darkness, don't. Your light keeps me from falling back into the pit. Thank you for being there for me. I'm going to find a way to overcome all this, even if I can only do it on a day to day basis.

In time I will wrangle my monsters and turn them into wild dreams. For now, I am going to nurse my broken body and try to not hate myself for not accomplishing anything.

Chronic Werewolf Update

Today was a pretty good day. I was exhausted and sore, but not to a point that it's hard for me to function at all. So I enjoyed it. Not only that, I got to spend time with one of my good friends who is moving to Seattle. Seems like a lot of my true friends keep moving away lately, which is hard but I get it. Change happens. I'm glad that this change is a good one for my friends, because I ultimately want the best for the people I love. I won't lie and say I am not sad to see people go.

We talked about my health a little, and I have had a long hard road. Where I am now is better than where I was in Feb, but it hasn't been easy. I have my medications for my brain and medications for my body, and so many different kinds of medical professionals. All of this has been overwhelming and I have had to learn new coping mechanisms. I have come a long way.

I hate living with constant pain. I hate not completely trusting my mind. I have a list of complaints, but at least things are slowly getting better. They had to get worse before they got better, but in the end things are adjusting. A lot of what I do to cope is adjusting.

My husband and I have been really busy in the last few weeks too, so we are trying to slowly unwind. I don't function on the same energy levels as most people around me, so I need to take down time to recover if I push myself. It's like my energy bar is always at half, while others get a good nights sleep and wake up with a full bar. It sucks, but I learn to adjust to that as well.

At least despite all the pressures lately, things have been good between my hubby and I. I am always thankful for that. I have an amazing relationship and I know it. I am proud of it. We've been through a lot together and have come a long way. A really fucking long way. With border crossings and everything.

Now I think I will rest up and watch some silly shit with my husband. One of my favorite distractions.

Medicated Wolf

These chronic wolf-woman observations are brought to you by the song Comfortably Numb.

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It's getting easier to tolerate all the medications I need to just reach half of normal functioning power. I feel like I am constantly an outdated, broken down, model of a creature called Kweeny. Some wacko that was lovable. A person who used to maintain relationships in a healthy way. Someone people once referred to kindly as Kweenybeast. People respected hir. They knew ze was nuts but for some reason, weren't afraid. They didn't leave. They didn't drop hir like a  hot rock the moment she flipped out. It didn't matter she was insane. She was still welcomed to the group and made to feel a part of it.

I'm on pills to regulate my "imbalances" in the brain. No one knows the terrors I have seen in my life, right up to this year. Being locked against your will, screeching like a banshee to be let out. No one caring that though your mind is shattered, your body is too, and it's flaring up right now due to stress. I really do feel like a ghost these days. A Ghost trying to remember who ze was.

It's hard to sleep still. My body is getting used to the drugs. The same drugs people constantly tell me to NEVER STOP TAKING, as if I do I might revert to my crazier self and do unspeakable things! It's cool, don't worry reader. I won't stop taking them. You don't have to deal with me at full strength anymore. You don't have to deal with me at all if you don't want to.

And unlike before, I won't be broken when you leave.

Thank you meds. Thank you for taking a lot of my fucks away.

Being bipolar is like having waaay to many feelings all at once, all the time. On a high swing, things are fucking amazing! It could be anything from eating cake, to your wedding day. They will be about the same fucking awesomeness, and it will feel really good.

The down swings though...

Let's just say I have stared my death in the face more times than a person should.

Some of my pills I take are for that. For the bipolar/emotional crap.  And I should never stop taking them. EVER, EVER...or else I turn into a werewolf and eat the world.

Some of my drugs are for pain. I take a combo of things for pain, because pain is one of the few constants in my life. I can depend on pain. It won't leave me know matter how much I cry and beg. I am done judging myself for my drugs. I have to take these things and that's that. I want to make things, go places, see the world outside my house. I want my skin to not hurt in sunlight or shade, I want to dance without costing myself spoons for tomorrow. I want to go to a convention and not sleep though half of it because I hurt too much.

Always because I hurt too much.

I know I have to be careful with this path, because my mother was a pill-popper. She smoked things, but mostly she loved pills. She got whatever she wanted from her quack doc. I watched him as a child giving her drugs, handing her packages of pills. It's been hard for me to adjust to this life. This strange sort of half-life I maintain with medication. I'm trying to teach myself to call it that, to not always refer to it as drugs. Not because they aren't drugs, but because I need a better way to look at the situation. So I don't allow people to treat me like her.

If I ask for medication, it's because I fucking need it. I don't do it for a lark or to get high. A lot of the stuff I take I can't get high off of anyhow. I don't do drugs. I medicate. I am trying to be a better me, even if that me has lost her sexdrive and has become numb.

There are always side effects.