Cold

Its an illness is a temperament and a temperature. I don't like any of the definitions to be in my life. I never thought I would move somewhere where the weather could kill me. I grew up in Cali land of the earthquake, drought, forest fire, wild fire, and mudslides yearly. I've seen the tough or a hurricane ridding through Andrew in Louisiana when I was a child.
as a youth I spent every summer in Louisiana land of warmth. That's mostly what I remember instead of the horrific mosquito's that would leave huge stains of blood when I smashed them and always made my skin crawl. Picking off their bloody corpse and tossing them away. This was long before the introduction of the Asian mosquito when regular OFF and that Avon stuff still worked, and they were mosquitoes that you could hide from. The women singing their serenade as they search for you in the dark, following your breath. At least while I was awake I could wrap myself into a stifling cocoon where she couldn't find me. Of course I always woke up covered in bites. I still can't win the war against mosquitoes, the hurt more than when I was a child, the tiger mosquito makes no sound and can usually only be felt as a slight breeze. Their bite, because I'm allergic (yet another allergy) is incredibly painful. It first stings like an injection and then swells to epic sizes and I end up sleeping in long sleeves and long pants in the middle of summer. But at least its warmth. I can take being too warm. 113 degree weather was common in my home area but never the other extreme. I had to drive to get to snow, and once there was a hint of snow we had to put chains on our tires. Often we would be forced into buying them at incredible prices because they would turn you away at the road blocks if you didn't have chains. a blizzard there is nothing like a blizzard here. I've driven through so much worse here without 4 wheel drive much less chains.
I surprised myself when the first few years I was here, and it snowed a lot, I had no problem with the snow or the cold. Then something changed. I don't know when, but I could never get warm. I was always a little chilly but now the cold has seeped into my bones. I know when its cold outside even if I'm wrapped up and sweating in a heated room. I ache. When I go outside even if I'm warm enough, I shiver inside. I have to take off layers in every building I enter as the heating makes me sweat. if I'm going a few steps outside I won't put on my coat but I'll still be chilled as I continue to sweat. Thankfully my sweat is pretty much odorless. The more bundled up I am and the tighter it all becomes the more I ache. my legs and joints protest like I'm walking uphill. I often curse under my breathe. Either I'm totally prepared and miserable or under prepared and miserable. Time after time I will choose the hot miserable plan because I will ache less when I get home and it wont take as much out of me. If I expose myself to the cold then I sometimes lose days to unbearable pain that cant really be numbed and only so barely be brought into the bearable realm. I'll spend days in a limbo where I am so exhausted that I can't stay awake but every time I start to nod off I'll jerk awake, muscles electrocuted by the fibro. I toss and turn. No matter how many scripts they give me I'm never still. My cats will book end me but never cuddle because they know I will move too much and thus disturb their sleep. So they post nearby but never next to me. The only time that I seem to sleep a true sleep of rest is if I'm not alone in bed. Sleeping next to a friend or lover will bring me rest the way no pharmaceuticals ever will. The more noise of life there is the better I sleep, nature, city noises, festie noises, rainbow nation noises all let me sleep deeply.
My hands feel like they are on fire. Put your hand down and hold it on one of those old red hot could burners kind of on fire. sometimes I can keep it to the extremities, which are prone to falling asleep at startling times, other times it consumes me and these are days that are lost to pain. On a normal day its easier to numb the body, its on days that the body can't be tempered down that are again days that I lose. Most of my days are lost days and nights.
I spend most of my life just trying to dull the pain enough to function without being controlled by it. Sometimes I feel too tired to exist. I'm not sure how many people that will make sense to but its the only way I can explain the sensation. I sigh, I feel like letting my head hit the table, but instead I type carry on. I do things that involve holding myself up, being awake and aware. All while my left hip joint is screaming at the thigh, my right leg is asleep, my right knee is asleep (just the knee) and I have sore shoulders and cold arms. A chaos of bodily sensations none of which lead to relaxation or being pain free. I squint, looking down my nose. I do this most of the time because my eyes are so dry its hard to keep them open and when I squint my nose wrinkles so i feel this is more natural, and possibly thinning because its harder to see the extra weight around my face that prednisone added to my life without taking away as it left. I'd do most anything not to look like a dumb stoner or Paris Hilton so I also raise my eyebrows as I look down my nose and therefore eyelashes. I feel it creates the illusion of an open and receptive expression. You may find it amazing to find out how many of my mannerisms are studied rather than natural. Or perhaps you'll see yourself in me a bit.
my fingers are always cold unless I'm sitting on them. If I'm not busy using them to type, read or make something I'm always sitting on my hands or I have them tucked between my legs. I hope that this makes me look young, small and vulnerable, or terminally cold in my extremities, rather than an odd habit.
Mustn't have odd habits. Might expose one's pathology to the world *wink*
I think the only proper way to preceding sentence is to think of a thought in your head as a thin quick little man who runs past your background (your back) saying those words as he ran, perhaps in a high lilting voice. This is sometimes how a divergent track of thought triggered long ago by a subconscious Sherlock reference running around the corridors of my mind, will run past. I think a lot, and very fast. I'm hyper focused on so many things. Everything that fills my peripheral vision and what its doing for one, the sensations and pains in my body, the one thinking about someone I love and talking to them, bouncing ideas off them as if they were really there. we all do these things, I just do all of them at once, I get a lot of thinking done when I day dream. The thought of only having one train of thought, all consuming thought is not only inconceivable its a bit unsettling. Anytime I have experienced the presence of only one thought it has overwhelmed me and caused panic and anxiety. when the level of distractions drops below critical mass sadness is almost always the first thing to bubble up. I don't really have time for that anymore it's time consuming. I guess you could say I've found a way to be solitary, as my health often requires it, and still never alone with my thoughts. Yeah I know exactly what I'm doing, I am using a coping mechanism to "deal" with my PTSD and also to keep my clinical depression at bay. I breathe a lot deeper and with reverence in a way that I never did before. I find stopping often to extend an ordinary moment can be very calming. On the outside, to the people who see me the most, I'm very still and relaxed and carefree. It's all very practiced and held together by silence and a thread. I could erupt in a moments notice into passion of any kind. But the pain is constant and unavoidable, I wish they made endorphins that you can drink, sometimes I have the reprieve of sleep but it is slight. always tired, always tired. always sore, always sore.
If it was just pain then I could deal with it, insomnia I've been dealing with for as long as some people I know have been alive, but its the fatigue, wearing down, inertia, the mental fog. So much productivity lost... Some times I just lay there and think. I can't sleep even though I can't quite stay awake, and I think. Sometimes i write in my head. I used to write in my computer but then I found it was too tiresome with less reward. I don't think anyone has read anything but my poetry from years ago. Stumbling attempts I'm sure. I don't know what I'm doing now, with this. I suppose I want someone to know what its like to be in my head even though I know maybe two people besides me will read this. I hope that at moments I will give someone strength simply my letting them see me say "I have felt that way too." physically, mentally, whatever, but the same. None of us are alone in our pain. The great and the minute, we all feel it. some of us show it, but not many. Our society homogenises to the healthy and active while the unhealthy fall away. Lone wolves each in their own cave be it apt or loft or room in a house. People forget about us. They may not notice or intend it. They just love it when they see us because its always been so long. *queue rush of endorphins, or maybe oxytocin I have to check* and then maybe another year passes until they see us again, maybe they even think about us from time to time, but they never come to see us, they never make plans with us, we don't chat or text, We might not even know where they live. It's okay it's easy to forget. No matter how much you like a person it seems there is only so much energy available and every person chooses to spend it in their own way. there are those who make it to parties and performances where they know a lot of people they know will be there but they don't think to invite their friends who might run in different circles, or overlap but not in ways that people think of. That's a hard one to explain.... Everyone has their favorite people, or at least their priority people, the people they expend their energy on. There are many of us who are ill who once did but now don't fit into the 'expend energy on' group. They start forgetting to invite us because we so randomly come. they stop bothering to chat because they are absorbed in the things they do on a normal basis and calling us has become strange. Or our illness makes them uncomfortable but they don't know how not to talk about it. Or they aren't willing to make allowances for ability. I guess it can be strange to make comprimises in places where one you didnt have to, to include someone you love. but you dont once, then it happens again and again until it becomes habit and you don't see who was once your close friend anymore. you no longer talk or write. It can happen so fast. with one text conversation.