Resignation

This whole week so far I have battled with sleep. I'm not even sure why, but there's this storm of raging crap revolving around my head every time I lapse into solitude. And I suppose the other thing is the outrageous amount of pain my right knee insists on putting me in. I'm starting to think that the time may have come to see a doctor. But I can already see how that will end up. And I really, honestly, cannot be bothered with that dreadful and dreary cycle of doctors, scans, surgeons and physiotherapy. I just don't care that much, I'd rather be in pain.

Not really actually, I just feel like this is the less painful alternative. If you hadn't got this feeling from my previous post, I've had a gutful of doctors. So congratulations if you managed to miss that, that's pretty damn impressive and totally irrelevant.

Anyway, it's now 12.30, still in pain, still thinking, not so surprisingly, still awake. I want to be asleep, I really do. I'm two days into this week and already I've burst into tears more times than is ever necessary. They're not full on breakdowns, just little burst of "Omg, what am I doing?!" Part of this is being overtired (as if that wasn't already obvious) and part of it is my life being crap and I want a better one. And I feel like that in my nice and developed country with the modern miracle of medicine, I should be able to have it -- and not the other way round, which has ended up being the case for me. It's challenging for one to consider medicine as being something that causes illness. Medicine is synonymous with healing and I suppose at a much more subconscious level, that's the part I'm finding hardest. Medicine should have and should be helping me, and yet all it's done is made things worse to the point where I'm going through all the delightful tests I outline in somewhat colourful language in the below post.

So yes, it is very, very challenging to consider that something that should be helpful should be so damn unhelpful to the point its creating permanent damage. Not only is the condition I have, more likely than not, been afflicted with so foreign and rare that I'm educating counsellors and not the other way round, the general idea of medicine being responsible for my current state is foreign enough to people on that subconscious level that they don't know what to say or do and I just don't know how to accept it and move on with my life. I just can't. I just cannot make any sort of peace with any of this. It's so distracting because it's always there. I haven't done any helpful work for school since last Wednesday and I don't know when I'll be able to do anything helpful for school again. This period of indecision, where nothing is confirmed, lasts until July 20th. Yes, the day before my birthday. I'm being set up for a lovely early birthday present here. Perhaps I'll just have to ensure that I don't make it to that day. At any rate, until I reach July 20th, I'm liable to be distracted and agitated and wound up and just generally confused and upset. I've already had one school SAC pushed back. And I did a really bad job of that because now I've got three in one day so I'm half convinced I'm going to have to change more. Focusing for eighty minutes on a good day is an effort, fancy focussing dead on for three times eighty minute classes to complete all the SACs. This can't end well.

So why am I still awake? Because I'm constantly thinking. I was told to write down all the 'what if's' so I could quiz the specialist, but I don't think it's a 'what if' situation at this point. I was conditioned more than a year ago to accept that I had this "disease" (because that is what he called it). Being told I didn't actually have it was fantastic. Then being told I had it again? Absolutely debilitating. But still, not a case of the 'what ifs'. I know full well what will happen if I am officially diagnosed. I know what treatments will be offered, I know I'll be rejecting them, I know that regular testing will be a must, I know that I will be stuck like this forever, I know that I'll never use any kind of hormone contraceptive ever again. I know all there is to know. And that isn't much because my specialist doesn't know all that much either. Medicine hasn't advanced as far as we'd think and liked it to have. Yep, we can get fantastic awesome images of any part of our body. Doesn't mean we know what irregular readings and images mean. And that's what makes this so hard. The period of indecision is long, and there's no real guarantee we'll know what to do even when we know what's wrong.

I so want them to say that I'm not sick, that I don't have this disease. But suffering the debilitating effects of having my world crushed, again, I'm not prepared to allow myself that hope and optimism again.

All the dates for now are set. Part of me wants them to hurry, part of me does not. Most of me just wants this whole thing to be over, even though it won't be. It will probably never be. This waking existence is like a permanent nightmare and causing myself pain simply cannot wake me up.

I'm so tired of leaving people speechless. I'm so tired of being speechless myself. I miss my sharpness of mind and my ability to get things done. I miss certainty and I miss being pain free. Not that I'm entirely clear on what being pain free is like, because it's been an absurdly long time since I've been pain free. I'm not even sure that state actually exists.

I don't think I swore once in this post tonight, shows you how drained I am once the anger dissipates. All that's really left at this point is sadness and resignation. Swap the cussing for tears. Sealed my fate.

- Sky

You're going to life a happy, healthy life... LOL jokes, you're actually still sick

That's pretty much the essence of my last cardio appointment into Wednesday's appointment with the new respiratory specialist.

Lol, jokes. You're still sick.

What the actual fuck.

When the cardio told me that it didn't really look like the pressure had risen anymore, I was pretty much ecstatic (in my quiet blasé way) because that meant it was over. It meant that all of this crap was over and that after a year and a half I would be getting my stupid life back and I could forget the whole thing had ever happened and everything would be fine.

The cardio organised this secondary appointment with the respiratory specialist as a precautionary measure. In the same way the doctors who are responsible for this current scenario did not exercise enough caution, it is entirely possible that this particular cardio exercised too much. At any rate, it was probably needless to point out that I wandered through the hospital walls feeling overly optimistic about my chances of leaving that place completely unscathed. As per usual, I was very wrong. The initial consultation went on for sixty mintues. Yes, sixty minutes. I have no idea how that happened and it didn't feel that long and it definitely was not filled with happy news.

It was all basically "blah blah blah rare condition blah blah blah disease blah blah blah effects of oestrogen on respiratory system not well understood blah blah blah" aka "we don't really know much about whatever is going on" and then "but we're going to poke and prod you and do a billion diagnostic tests until we work it out anyway".

No. Fuck the lot of you. I'm tired of this bullshit and your mind games. I don't want to partake anymore. No more needles. I'm fucking over that shit. Stop taking my blood you vampires. We've established about a bagillion times now that there is nothing wrong with my blood count or my kidneys. So I'll thank you not to excessively bruise my arm again because that was an unnecessarily painful three days. So fuck you. Not to mention all the stupid lung capacity bullshit breathe out as far as you can -- sorry, that's not far enough keep breathing out tests. I FUCKING HATE THOSE! I'm terrible at them. I feel fucking retarded when it takes a  million goes to get it right meanwhile the technician is totally thinking "omfg, what a retard". And a CAT scan of my lungs because the injecting of radioactive dye to check for clots was apparently not invasive enough. No, I actually have to do another scan so we can check for smaller clots. Well fuck that! If I find out there are clots in my lungs I might hit someone. Or what about this lets open up your neck and punch a hole in the major artery so we can stick a catheter in there so we can deal with the right side of your heart and work out the actual cause and effect while you're still awake and cycling. WHAT?! Did I hear that correctly? You are cutting me open, while I'm awake, and sticking a catheter in my neck. Excuse me?! I don't fucking think so. But no one even asked my opinion, I just got told. I always get told. And you know what? I've fucking had enough of this bullshit. The simple fact of this situation is that it should not even be fucking happening. But no. It happened. And I have to suffer through all this shit and all this uncertainty with doctors who don't even know what they're fucking dealing with even though they created the original fucking problem

ALL I WANTED WAS CLEAR SKIN! I DIDN'T ASK FOR THIS BULLSHIT "DISEASE"! THAT'S NOT WHAT I WANTED! SO FUCK YOU ALL. ESPECIALLY YOU LIFE BECAUSE I REALLY FUCKING HATE YOU AND YOUR GUTS AT THE MOMENT. I HOPE YOU ROT IN THE DEEPEST CHAMBER OF HELL FOREVER.

And I fucking hate all the doctors. Fuck you all for being so nice. I can't even hate you for telling me how fucked up I am because you're all so fucking nice. This is not okay. I really fucking hate that. Fuck the lot of you.

I'm so mad and angry and paralysed and confused and sad all at the same time. I don't even know how this happened and I don't really understand and no one can help me understand because they're don't *really* understand either! I'm stuck in this cycle of permanent confusion and meanwhile in the real world I'm supposed to be aceing school and being an awesome happy child with the world at her feet.

HOW THE FUCK DO I BALANCE MY LIFE WHEN I'M LIKE THIS

I'm so uncertain. My life is uncertain. There is too much uncertainty for me to be able to function. And have the expectations shifted? No, not at all. Life continues to go on and I just have to be normal. I have to function. I have to achieve.

And I can't. I don't want to be strong anymore. I shamelessly ended up on KHL just for need of someone to talk to and I ended up educating the fucking counsellor. What kind of bullshit is that anyway. It's so hard suffering things that people can't understand. No one can comfort you because they don't know what's going to happen. There's too much uncertainty for that. Every time I'm left with an ounce of solitude I end up in this internal shitstorm monologue scaring myself into tears and/or blind rage because I can't fix myself this time. This time it's fucked. I'm in pain all the time, but compared to this bullshit, it's a fucking itch! You talk to people and all they can offer you is pity. Pity for the uncertain. Pity for what they don't understand. Pity because you're a pitiful human being who drew the really fucking short straw.

I'm just waiting for the goddamn lecture about how I don't have cancer or how I'm not starving in a third world country and that I should just be thinking that it could be so much worse. IS THAT EVEN SUPPOSED TO MAKE ME FEEL BETTER! It doesn't, in case you're wondering. It just makes me feel even more useless because I'm sitting here crying over fucking nothing. Every time people do things like that I feel totally belittled and insignificant like what I'm dealing with is trivial.

IF IT WAS FUCKING TRIVIAL IT WOULD HAVE BEEN FIXED A YEAR AND A HALF AGO AND I WOULD NOT BE SITTING HERE SCREAMING VIA THE KEYBOARD IN THE DEAD OF THE NIGHT.

So I don't have cancer and I'm not starving due to circumstance. That doesn't mean my apparent condition won't kill me. Google tells me it can be fatal. SO FUCK YOU.

I'm really just tired. I am so tired. This rage of emotion is exhausting. Every time I start to get on top something like this happens, but this, this has totally taken the cake. I'm not just unsettled this time, it's like I've been thrown at the wall. It's times like this I actually cuss myself out for teaching myself to hold it in and pretend it's not happening. Even now when I consciously want it to come out, I can't let it. I can't even make it. Emotion no longer bends to my will. Fuck you brain, you dirty troll. All my life you have done me a disservice and now you've convinced the rest of my body to hate me too. I hate you with a passion. You are the sole cause of my grief. My body is breaking down and it's all your fault because you're useless. All you're doing is understanding. And understanding too well at that. I totally get everything that is said to me and I tuck it away to torture myself with later. You're a fucking terrible mate. So fuck you. I'm so done.

I'm so fucking done.

- Sky

What the hell is wrong with me?

I had some other stuff written, but right now in this moment, it's not even important.

I'm just not happy. There's no one emotion to describe how exactly I am these days but happy is definitely not a word I would be using in any attempt to describe my feelings. Sad isn't right either, but it's far closer to the mark. I honestly feel quite defeated, like it won't ever be fine and/or good. My days are mostly consumed by pain. The last week has been the worst week, painwise, that I have endured for around two years. The last memorable pain week was when I strained my ACL, but thinking more this past week might even be worse, or at least on par. It's just so different to the other pains I've experienced because it's so variable. It's in my knees, it's in my ankles, its in my hips, its in my thighs, its in my elbow, its in my shoulders, its in my wrist, its like its everywhere. People talk about ways of reducing it, but all the reducing boils down to another long list of things I simply can't do. And I'm just so not okay with that. I can't be. It's so defeating. I can't go for walks without tape, and even then I'm pushing my luck. I can't write without the aids of support braces/bandages whatever they are. I've long given up protecting my ankles. You can't dull long set in aches -- aches you thought you'd left in your past. The general muscle soreness is the worst part though. You can't support that. I sit on my floor because I like the space and the way I can spread things out, but I can't do that either. When I do that, my knees protest violently about holding my weight.

And I can't relieve it with drugs because I'd have to use them dangerously and the temptation to go too far with that is only too real. It's hard to understand why someone would ever find that a temptation, but trust me, when ibuprofen doesn't work anyway and you're indecisive about your place, it's pretty damn appealing. I'm not witholding drugs from myself solely for that reason either, it's the minor concern. Knowing that I'll have to double and even triple the dose to help myself puts more pressure on my liver. I don't know what kind of stress my liver is already under -- courtesy of roaccutane -- and I'm not keen to test my luck. Unless I actually decided I wanted to die.

I also think there's a difference between having the thought and planning it out. I'm in a dark place. But that's not new news. I don't think I ever truly moved out of it. I'm just tired, exhausted even. The physical pain is but a portion of why I sometimes think that it's not worth it. And I do think that it's somewhat reasonable to wonder the worth in that respect. To be in pain all day is something I do not wish to experience in the long term. I'm tired of it. As far as pain goes, my body is only a prison. It no longer works the way it should, if it ever did at all.

The lung doctors are pretty high on the list of people I don't want to hear from anymore. I don't talk to physios, I rarely talk to the GP, I talk to the dermatologist because I have to at this point -- thank you roaccutane --, the cardio let me slide and you couldn't pay me to deal with that anymore anyway. But the lung doctors? I'm so, so over this. No one even knows whats wrong, and I want to be left alone.

Being left alone. I feel so alone at the moment, words cannot explain. I know people are trying to help, trying to understand, trying to make my life as easy as possible, and yet, I can't understand why I feel so alone. Because I'm not. I often say that "this isn't as bad as 2008", but I worry its getting there, if it hasn't already. There's a poison in my mind and I can't fight it anymore. It's bigger and it's meaner than I am. It has more strength. It will always win. And who do you tell this to without scaring people? I'm in too precarious a position for the help I seem to need at this point. If it comes out how badly I'm struggling, then I might lose the drugs. And if I lose the drugs I lose the last shreds of my self esteem and I might as well have given up anyway.

I strayed a long way from being alone then. I know that I'm not the first to be like this and I certainly won't be the last. Some of my friends know more than others, you're pretty privvy if you're reading now and you know exactly who I am. But this intense loneliness I feel right now, and have felt for much of this week, has been overwhelming. I resorted to cutting, I think about it a lot. It's no longer just a simple cross of the mind on occassion and either act or dismiss. It's an aching need to engage in a behaviour that I'm not even sure helps. I've resorted to solitutude in the past and that only makes me feel worse. I'm feeling nauseous like my stomach is churning for great portions of the day and I'm eating less and less. Roaccutane's first saving grace is that it forces me to eat twice a day. I want to sleep all day, but this need to have this facade is too great, even for that.

I just don't know how to say "it's all too hard", face to face. I don't know how to admit I'm reaching the end of my tether. I don't know how to ask for help. And above all else I don't want the choice of help taken from me either.

I thought going away this weekend would kickstart a rise in my overall mood, but so far I have been very wrong. I planned to be in bed nearly half an hour ago and I'm only sitting here crying now because I'm so lost, confused and hurt. I just can't see a way out and it's terrifying. I don't think it's worth it anymore. There is no great enough end to justify what I have survived and am still surviving up until this point. When I stand up to move from couch to bed I will fight the urge to limp once more. Tomorrow I might cry again. But what of my life? I just can't definitively say that it's worth it.

And the worst part is knowing its so self inflicted.

- Sky