Time is a peculiar mistress

I wrote this earlier last week, and had been waiting until I had the energy to draw an accompanying cartoon to publish it. But here we are, a whole week later drowning in assignment tweaking and writing, with still so little energy that no cartoon has been completed. 

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Another night shift. It's been 3 weeks since I last got more than 5 hours sleep, and it'll be another 3 weeks until the end of this permanent dehydrated and sleep deprived fog. A new life line is to be inserted. But for now, I fight to maintain my grip on my existence. I've got into a rhythm now. Tablet on. BBC iPlayer or Google Play are my new best friends. Heat pads warmed, nurse sat on my sofa pressing the buttons when my fingers start to ache. The constant alarming drives through me like a knife. Piercing. Insistent. Soul destroying.

Time has become warped. Reduced down to infusion volumes and the witching hour. Two magic numbers. I look forward with every fibre of my being to seeing the volume fed turn over to 400ml. Or the clock ticking ever onwards, until the hour hand reaches 3am, which ever happens first. Then blissful beautiful blackness and sleep.

As the days draw on, the more I notice the changes. My hips protrude like too mountain summits, separated by a desert plain. Ribs and the buttons of my spine now resemble some kind of weird skeletal xylophone, my legs fragile as matchsticks in an open fire. I hurt. Bones are sharp and even sitting on layers and layers of padded cushions doesn't alleviate the pain for long.

I hate this. I feel like I'm disappearing, and not just from a weight point of view. I feel like I'm sleepwalking through things at the moment. I'm permanently exhausted. Lips cracked from dehydration. A permanent headache from loopy electrolytes, dodgy sugars. I feel like I'm lurching from one crisis to the next. Everything is falling apart.

He lied to me one time too many. As my doctor he should at least be talking to me directly about decisions about my care, NOT passing messages through his minions, ignoring me, and then lying to my face when I confront him about it. His tentacles have reached into my home life, it's disintegrating too. Problems are being brought to light that I had no idea existed, and to be honest STILL don't know if they exist or are a manufactured way of making me feel bad. I feel lost. Confused. Angry. Scared. The situation feels unreal. Like I'm loosing my grip on my reality.

The last few weeks have been full of so much stress and angst. Severe weight loss, sleep deprivation. Add into that unexpected withdrawal symptoms and spasm inducing pain, from the GP slashing my dose of pain relief. When will it all end? Every time I think I've hit rock bottom, the ground swallows me up and spits me out once more. 

As I said, time is a peculiar mistress. It's funny what a difference a few weeks can make.

Under Pressure (Day 10 of no TPN)

I promised myself what I first started writing this blog that I would do at least one of two things:

1. Always be honest about how a situation makes me feel, no matter how unreasonable my reaction might feel.
2. To record this for myself first and others later. 

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This post is about my mood, which at the moment can only be described as absolutely foul. Everyone and everything is unbearably frustrating and in my eyes nobody can do any right. The stimulus for this sudden and thunderous change puzzles me even more, and is completely out of line with the proportion and strength of my emotional reaction. My carer asked me what I wanted to wear tomorrow for my morning at uni and would I like a wash now as well to be woken up early for one tomorrow.. 

Immediately I felt a hot surge of anger. "And be up before even 3 hours of sleep?! I howl mentally "No I don't want a fucking wash!" The voice in my head screams, internal me leaping off the bed to shake my gorgeous carer warmly by the throat. "Fine" my mouth says coolly. Smiling, the carer bustled into the bathroom. "Rosie, do you want your shaving things". A muscle I my clenched jaw twitches. No I don't. I don't even want a wash. I feel forced. Entirely of my own making, but still real nevertheless. 

I can hear the TPN nurse busy preparing her trolley to connect me up to my torturous ever beeping pump. My heart sinks and my frustration and anger grow, like gasoline poured on flames. I  don't want my stupid pain in the arse TPN. I don't want all these people in my house constantly asking the same stupid questions over and over again. I want to scream. I just want everyone to bugger off and leave me alone. I want to get a full night sleep uninterrupted. Is that too much to ask?? Evidently so. 

As I said, completely unreasonable. I'm suddenly aware of the light bulb burning bright above my head. It's too bright. Making my eyes hurt. I resent it and want to rip it out of the ceiling and smash it into a million pieces. Woah! Talk about over kill. 

"Stop the world, I wanna get off!"
An original cartoon by Rosie P

My eyes sting and start to blur. My throat feels too tight, nose runny. My body prepares itself to cry, the normal measured response to being extremely overtired and emotional. But destructive angry me says don't you bloody dare, putting energy it doesn't have into suppression. It sees it as a sign of weakness. I know there is only blocking the dam for so long. I know letting it burst in front of someone will only attract sympathy. I can't stand all the questions, the attention. The perfect reaction for me is just for it all to be ignored, if I want to talk I will. 

The carer approaches, the commode rumbling down the hallway into the living room, water gently sloshing over the sides of the sides of the wash bowl. I hurriedly sniff and wipe my eyes. Now the rage is starting to ebb, I feel like the stuffing has been knocked out of me. I don't care what I look like at the moment. Not in the mood for anything except the sweet oblivion of sleep. Stop the world, I want to get off. 

Simple things such as washing and getting dressed when connected up to my failing life line 24 hours a day are mammoth proportioned in terms of effort. I am pinned to the bed thanks to the drip stand. I do have a rucksack, but by the time I've faffed about with that, my slim opportunity to grab clothes, wash and change my upper and lower halves would have been lost. 

I'm currently averaging 3-4 hours sleep a night, thanks to the almost constant mysterious alarming of the pump. In the morning I only wake up when the nurses are in the process of doing the morning medication and waft those heinous chlorohexadin wipes under my nose. Washing before being connected at night is not much better. By the evening, I often simply don't have the energy to wrestle the fluids through my top, change, shave, wash, moisturise etc. And also by that time I just don't care, all I want to do is to sleep. 

It's a race against the TPN nurse next door as she prepares the syringes of intravenous medication. Stressful and worrying. I can hear her opening and closing draws, as I half heartedly throw my flannel into the basin of warm water. I speed through my routine when my carer arrives back with clothes for tomorrow. The exhaustion induced rage rises again, as does the mantra "I don't care". Only, the more I say it, brown hair bouncing in angry defiance, the less I'm sure I mean it. 

The wheels of the TPN trolley rattle down the hallway, I hurriedly pull on my trousers. My carer still stands, arms full of clothes I don't want to know about. It's into this scene, arms half in to my top, hair sticking out like a bush through an arm hole, that the unfortunate TPN nurse emerges with the speed of a souped up Ferrari. "Ready to be connected?" she exclaims happily. I've been told my hard stares can melt mercury, even through a mess of hair and clothing... as if pulled by an overwhelmingly strong force, the TPN nurse backed out slowly without a word.