If you have been reading my blog and are wondering what they hell is up with my pissed off attitude lately I’m here to answer your burning itchy question.
A bunch of shit is irking me. It’s not really your fault, dear reader, though I’m sure that my random diatribe might suggest otherwise. Don’t get all butthurt, enjoy my outrage for the spectacle it is.
Let me break down some of the seriously white problems I am suffering from
It is summer time. I hate summer time. It is hot, business is slow, the sunshine is out there trying to kill me.
Maybe you had forgotten that I am very ill, or maybe you thought it was a joke, some strange plan to mess with your heads — nope I am really and truly very very sick. Thought I have managed to get my symptoms somewhat under control I am constantly living from minute to minute, hoping that the sun does not shine in my eyes, hopping that when I have a DR apt that I will feel well enough to leave my home (which I did not this week).
I’m having something of a flare up with my health. Given that the multitude of tests and scans I have undergone have failed to find anything I am doing what I can to avoid things that make me sick. And when I say sick I mean sick. Sometimes I end up barfing my guts up from exposure to the sunshine.
Sometimes I binge drink and barf from the booze, but mostly I have been avoiding alcohol, avoiding sunshine, avoiding anything that resembles fun. Even going to clubs takes a toll on me. The noise, the smells, the back breaking shoes, no matter what I do I seem to end up in pain. The question is how much pain can I tolerate and how can I best mitigate it.
Because of my current health flare up I had to forgo my long anticipate trip to Las Vegas. I have been wanting to go and hob-nob with some super-hookers, but given the fact that I went on a family adventure to jazz fest, then I spent time in California defending and finishing school, and then I had to make another trip back to california where I just let the nervous breakdown I was having hang the fuck out (I was mostly black out drunk the whole week I was there).— I have had too much sunshine and can not continue under the guise of summertime. I must avoid going outside until the leaves change.
Maybe you think I am being mellow dramatic, maybe you want to label me a vampire, or a goth, or just dismiss my symptoms as some sort of psychological thing that is not real. And this is where I say FUCK YOU. Would you treat a person with a visible disability as though they were faking it? Would you mock them, joke about their condition, ask them to infect you? Nope, you would not. So stop taunting me and asking me to bite your neck.
The social expectation for decorum would prevent you from mocking a friend with one arm, someone with diabetes, or an elderly person with mobility issues, but somehow social niceties escape a lot of people when they discover that I can not go in the sunshine.
And I want to go in the sunshine. Sometimes I really really miss being able to act like a normal person. I’m sick of having to wrap myself in a burka, a massive sunhat, full shoes, wrap around shades, spf 100 — just to cross the street. It is exhausting. I’m really getting frustrated.
I hope you can see the matter of fact way that my illness is effecting me.
Sometimes I can push myself, but I always pay for it with days and weeks of not being able to move, vomiting, dizziness, sometimes I just a little stream of light in my eye will blind me for a moment preventing me from seeing things and walk into walls, trip over chairs, fall down stairs. It really sucks.
It sucks that I can’t be in Vegas for the Desiree Alliance conference, an event where I expected much fun would be had. While I was packing I wanted to know if the hotel had laundry facilities, but in looking at the site I realized that the conference area and the suites are not in the same building, they are separated and require a long and leisurely stroll in the vegas sun.
I knew that would put me in the hospital. I don’t like being a patient in the hospital. I’m a horrible patient. I get all scared, I cry. I’m a big baby when I am sick.
So I called, and tried to bargain, and I managed to find that there are ADA rooms but that they are not close to the conference area. No matter what room I ended up in I was gonna be in the vegas sunshine, frequently. And that was just not gonna do. I had to make the hard choice to stay home. My heart is heavy and I spent some time crying.
This is my life.
Can I go out there today? Is the sunshine going to fuck me up or might I make it quickly from building to car, to building. Never at high noon.
Often the sunshine coming through the cracks in the drapes feels like shards of glass in my eyes. It feels like my third eye is being gutted. My whole body aches. I am queasy.
So you wonder why I seem a tad bit hostile?
I missed a medical appointment I have been waiting six months to get because I was simply too unwell to go out into the overcast afternoon. I had to forgo a long anticipated event where maybe, just maybe I would make some friends and share some camaraderie.
My life is a constant struggle to get from day to day. I never know if I will be able to go outside, if things will be just fine, if I will end up in the ER, if I will find myself in a situation where I’m alone and too sick to cope. I’m sure I must look like a drug addict to the average eye. My medical records are clean. Squeaky clean. I don’t have anything. But I have a bunch of symptoms. Sometimes I can just push the pain and frustration into my yoga, into my writing, into some place where I hope I never have to confront it, but currently the madness wants to come out and play.
So I hope you have not been too mortally wounded by my last few posts here. I’m going through some heavy shit. I’m at a point where my life is changing, and though I assume it will be better, I realize that everything could fall apart without any warning at all.
Yesterday I fell down the stairs. I thought I broke my ankle. Luckily I did not. Two days ago I was having ‘an episode’ where my spine sort of froze up preventing me from moving. It’s sort of like a temporary and partial paralysis. I could not figure if I should try to take something for the pain or what, but then I remembered that one of the best ways to cure my locked spine is to walk around in my stripper shoes. Really.
So I walked around in my eight inch platforms for a few hours and felt a lot better. Then after a day and a half I fell down the stairs. I landed in my stripper bag.
The falling and the walking into things seems to happen when my sight disappears with the light. Also, I fall when I’m suffering from an episode. Not always, usually before anything else happens. Like a precursor — I fall over and I know that I’m gonna get taken out of the game for a while. How long? Don’t know. Could be a night, could be a week, longest was three weeks solid, with bad effects for months and months.
And though I have a perfect setup to make my living at home, to tour and perform at night, to write and teach and do all the things I want to do, I am all bent out of shape cause I can’t do a bunch of day things. It should not bother me that I won’t be able to play with the super-nerds at the university of las vegas, or that I can’t commit to any sort of full time full sun anything. My life is stymied by this illness and it should be just fine. Except I want to have the option to do normal things. When people ask me if I want to go on a boat, to a barbecue, to a picnic in the park, I want to be able to say yes. But unless it’s a night time party, I can’t. This lack of daylight living seriously limits my friendships and really stresses the few friends whom I do have.
Yes, sometimes when I go out I act impulsively. Last time I went to california I was drunk the whole time. Yep, I was on a bender. Would I have been less sick and exhausted if I had refrained from the devils beverage? Maybe, maybe not, but I would have had less of a rock star time. Sometimes after months of not seeing anyone, not seeing the light of day, not being able to run errands, or go to day people events — sometimes rock star is all I have to work with. Give it all to me, NOW, while I am out here in the light of day. NOW! Then I’ll go home and regret it either way. Rock star in the daylight, or nun. Makes no difference on the other side. Either way I get dizzy, confused, sick.
And all you happy people who don’t have to live in constant fear of the sunshine, you might be thinking ‘just make the best out of it’ or some such cheery ideals. Yep, making the best out of it. The best does not always equate into being cheerful. It is hard to be cheerful when the bulk of the population roams around entitled and tan, oblivious to the fact that that horrific ball of gas in the sky is making some of us sick as all fuck. Businesses close early, even fuel stations close early around here. If I need to fuel up my vehicle I must do it on my way in at five in the morning, or on my way out at ten PM. Three in the morning is no time to pump gas, pick up groceries, do laundry, or hang out in a coffee shop. This part of the world shuts down at night.
I am constantly dancing around the mood, making sure I get inside before the sun comes up, making sure that it does not fry my brain, my skin, my eyes, my soul.
The whole thing gets really old. Sometimes I am bitter. Mostly I read a lot.