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Nearly four years ago, I was sent home after gender reassignment surgery. I was given a small supply of Endone. Tonight I dug into that for the first time ever and it hasn't done a damn thing. One of the symptoms of this burgeoning chronic illness is horrible levels of discomfort when I stand and especially when I walk. Going from the front door to the car of the person picking me up yesterday left me feeling like I'd just sprinted a few blocks. A few people have suggested that this is POTS, or postural orthostatic tachycardia syndrome. The symptoms are a very close fit. So things like having a shower or getting dressed require rest stops where I pant and flop and feel like death. In a new and entertaining twist though, this has joined forces with another condition which isn't dangerous and usually doesn't cause me much discomfort at all but in conjunction with the POTS hurts more than recovering from surgery did, even in hospital. Given that this is likely to get worse if I do anything which aggravates the POTS, such as getting dressed or walking even tiny distances, I'm very much NOT looking forward to the appointment with the doctor I have later today. As it is, there are lots of involuntary spasms and high-pitched noises This is the least fun I've had in a very long time and I'm including things like coming off my bike and cracking my scapula in 2012. I would like this to stop now please.
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It's nearly 3am and I cannot sleep. I have a meeting at work tomorrow where I will be advised that I no longer have a job due to "breach of policies", that is, I'm working too slowly. Tomorrow will be the first time I have gone to work this week and I will be going in purely for that meeting. At that point, I will no longer have a job and subsequently, an income.

This is not a surprise. On Monday, being driven to the shops and buying some groceries was enough to reduce me to a panting, sweaty, aching wreck. Today, making dinner did something similar. I can't work. Hell, I can't even look after myself. I had to rely on a friend to buy cat food for me the other day so that the fluffbrat didn't go hungry. So not a surprise. But this is where the wheels really fall off my life. I lose the ability to retain my home by dint of my own efforts. Doing the simplest things HURTS and renders me incapable of doing another of the simplest things. So I can't lay down and close my eyes without thinking of tomorrow, and then I cry. Crying is another of those simple things which can be exhausting, so I should avoid that. So I make ugly terrified keening noises while tears run disconcertingly into my ears and my cat flees to the relative peace of the loungeroom. This is no fun so I've made a pot of tea and am just going to try to draw breath.

I am so over this. I am over being sad and angry and frightened and sore and exhausted. I think I'm into the bargaining stage which is awkward because there is nobody to whom I can beg to make things better. So I'm back to anger. It's a really good thing that I'm still way more interested in being me than being nothing because dark thoughts can be awfully dark. I just found a whole other set of ways in which a lot of things in the world that people take for granted are not for me anymore. I wonder just how circumscribed my existence is going to be. I wonder just how long my friendships can remain active in the face of me not being able to do much to maintain them. So I see my life shrinking in scope and the days running into each other until disability trickles into old age and I gently and oh so blandly and tediously wink out. This was not the life script I had in mind and I mourn the self who I had hoped to spend the remainder of my life with. I need this to not be my reality, please.
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Yes, I'm back with a vengeance. I have a lot of feelings to blog out and a whole new era of what the fuck even is this bullshit to negotiate. So there will be a bit of a wave of posts.

My mother came over to visit today. When she initially suggested that, I made dithering awkward noises and then decided to come clean and explain that I wasn't really home to visitors because of the frankly squalid state of my home. The upshot of all this was that my septuagenarian mother came over and cleaned my kitchen for me while I dithered around the edges. The extremely minor picking up and single load of laundry I did was enough to leave me shaky and vague with sheer fatigue. Just to re-iterate, minor housework and lunch with my mother destroyed me. So yeah, I'm not just a bit slow and tired, I'm at the stage of basically not being able to look after myself anymore and my elderly mother can run rings around me. I do not feel like a grownup anymore. This is apparently my new reality and I genuinely have no idea how I'm going to make it work.
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The last three weeks at work have been an exercise in futility. I actually made it all the way through last week but that was because I don't work Fridays now and Thursday was a public holiday. So I managed three days. When I say I managed three days, I mean I stumbled home on Wednesday and immediately fell into bed. I was completely written off for the next day and a half and was still sketchy enough that I was super flat for the rest of the weekend. This week I was flat on Monday, staggered home on Tuesday literally shaking with fatigue and lasted about 45 minutes today before coming home and going to bed for seven hours. I've just gotten up and I ache all over and thinking is something which happens slowly and with effort. I'm clearly trying to function well beyond my capacity at the moment and it's a bit disastrous. There's no way I can manage to go to work tomorrow. I'd probably get there and last maybe an hour as an exercise in showing willing.

On Mondays, the first half of the day is usually fine. I start to feel nasty sometime after lunch. Tuesdays are inevitably worse, probably because I pushed on Monday. So hopefully two half days per week, ideally not consecutively, would work. I really hope I don't look back on this entry and sigh wistfully but I know it's a possibility. I think I've got to the point where this body has no redeeming features though. There is basically nothing I like about it at all.
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No, I haven't posted for a while. Just over a year ago, I gleefully moved into my new unit and looked forward to the next chapter of my life. It's not been the best chapter. To cut to the chase, my health has deteriorated to a ridiculous degree. Work has become a horrific struggle to the point where even cutting back to four days a week has been useless. I took three months of long service leave and badgered doctors and other health professionals, hoping to find and answer, and maybe recover some health with rest. Two weeks after restarting work, I crashed so hard that I came home, fell into bed and slept for more than 20 of the following 30 hours. I saw my GP last Friday and she has referred me to a rheumatologist using terms like "fibromalgia", which, now I'm looking for it, fits horribly well.

People have told me that this isn't the end of the world. And no, it's not fatal. But I'm squinting at my finances, trying to work out how not to lose my unit while living on the DSP. (which provides no allowance for mortgages, unlike rent - apparently it's ok to pay off other people's mortgages while on a pension, but not your own.) This unit was effectively going to be my quality of life insurance for when I was expecting to retire in 20-30 years time. Now...this is going to require some epic juggling, and that in turn will require more juggling, just to find the personal resources to do the epic juggling. Walking more than a couple of hundred metres destroys me. I weigh nearly 120kg - 70kg me from 4-5 years ago would be beyond horrified. I am now morbidly obese, transfeminine, essentially disabled, middle aged and several flavours of queer. I am the living, complaining manifestation of the abject.

There are still good things in my life, but I am watching the latter half of my life dwindle to a tiny dessicated shadow of what I thought it might be. Having had the barest sniff of almost living in a body that fits me, that body has broken in several important ways. It's like opening a Christmas present only to find that someone has trodden on the exquisitely delicate contents before you got to them.

If you need me, just follow the sound of swearing.


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April 2017

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