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. 

Dehydrated Musings of a Zebra

**BEEP BEEP BEEP BEEP** I sink under the covers. The shrill yelling of my TPN pump pulls me reluctantly out of my light doze. My eyes snap open. Immediately alert. I roll over, muttering darkly. **BEEP BEEP BEEP** Erghh! "I hear you" I soothe. The pumps green backlight on its display screen flashes angrily at me. The alarm still squawking.

Ambix Pump with tonight's bag of TPN 

I already know what's wrong with it, down stream occlusion. It has been the same for the last 5 nights on the trot. Not more than 600ml of my precious nutrition has managed to be infused per night. If I'm extremely lucky I will get 30 minutes between beeps. But more often than not it's been every 10 minutes.

The lack of food and hydration is starting to have a noticeable affect. I have an almost permanent headache, am increasingly grumpy and distressed, and am lacking in energy. As for my mouth feeling like something has thrown up in it, than curled up and died, things are not quite as grand as they could be.

My brain tortures me when I do manage to drift off. I dream about nice cold thick milkshakes. Strawberry with a large blob of vanilla ice cream in it. My favorite. The ice cream floating like a beautiful creamy iceberg. Then I wake up, drooling. Pancreas throbbing from starting to work to produce enzymes to break down this mysterious mirage.

** BEEP BEEP BEEP** instinctively I stop and re start the pump. But it's only as good as shoving a dummy into the mouth of a screaming toddler. It spends a few moments sucking, slightly dumbfounded that you had dared to stop it mid tirade, before spitting the dummy out and screaming hell for leather once more.

We have tried everything and still it alarms. Sitting up? No. Lying down? No. On my side? No. X-Rays, and a procedure to check the position of the line. All came back clear. We have tried two different pumps, changing the pressure gauge setting on my current pump, putting it to the maximum it will put up with before alarming. And although it had made some difference, it hasn't been enough to get a viscous bag of fat content TPN (known as lipid) to go through successfully. I can't help but wonder what the team will come up with in the morning during their special consultants meeting. Whatever it is, I hope it helps.

I'm at the end of my tether. My get up and go got up and went days ago. But still I battle on. This will not break me. I have been through worse, and came through the other side more determined and stronger. I might be down at the moment, but I'm definitely not out.

An Exam Officer Calls...

Doing any type of exam is scary and stressful. Add in a malfunctioning body with several complex and chronic illnesses, each with their own set of difficulties, and suddenly those stress levels find themselves in danger of shooting off into orbit.

The email from the University sits in your inbox gathering dust with the other emails that are too scary to act on, but too important to ignore. What if they refuse my request? What if they won't allow me the help I need? Hell, what help DO I need?! I mean you can't exactly phone up and say, "hi I wonder if you can help me. I have extra requirements for the exam... what help do I need?... good question..." you'll be a laughing stock! No much better to wait until you've worked it out, then you can go in and ask them straight. That's what they expect.

"Charlotte Rides in on her Red Charger"
An original cartoon by Rosie P

But life happens whilst you're making other plans and before you know it, it's a month before the deadline and you've thought no more about it than when the letter first came through the door. Its almost too late. And it's into this internal chaos that Charlotte from the University's Student Support Team rides one day completely out of the blue, her stead rearing dramatically. Her voice over the phone is quiet and gentle, yet firm. You know from that first exchange of hellos that you're in safe hands.

"Do you have any ideas as to how we can support you for your exam?"she asks innocently. Immediately that panic rises up from no where, and your brain goes into panic screaming mode.
Eyes wide with fear, you manage to squeak out a "No. None".
"That's fine" she replies brightly, "I didn't either when I was doing my finals". A tidal wave of relief halts screaming brain in her tracks, like a slap to the face.

Charlotte suggests you look at the statement of disability paperwork you filled out when you first joined up. It's years out of date, but that alone is a good start. It's now Ehlers Danlos Syndrome rather than plain hypermobility. Catheters and Hickman lines. She knows a bit about EDS does Charlotte. She's arranged many a special requirement package for students with the condition in the past. She knows just where to start

A Computer written exam, possibly with voice activated software. Maybe an amanuensis if I would prefer? From talking further about my needs, especially the difficulties around medications and the need to rest my hands, rest breaks, she decides, must also go on the list. As must extra time for the brain fog and also typing speed, if I do the computer exam by hand, that is. She will speak to her boss to find out details such as what a home exam would entail and whether I would be able to practice with the selected amanuensis, (if I did go down that route), before the exam itself.

Just leave it to her she says. In the meantime, I need to have a think about the options we have discussed, and start writing a letter to be signed by one of my consultants that explains to the exam board my conditions, how they effect my ability to carry out an exam and how these will be life long. She signs off with those all important words, "Don't worry. It's all under control"...

Perfect.

Home is where the heart is...

It's harder than you think, the transition back to "normality". Well, I say normal, the whole dropping everything out of the blue at less than a moment's notice to be transferred to hospital to stay for weeks at a time IS my normal. That transition always goes without a hitch. The first night is hard with the sudden increase in noise and light, having to always ask and wait hours for pain relief, but within a day or so it's as if I've never left.

"Sleeping" an original cartoon by Rosie P

Like slipping on an old pair of gloves. Warm and familiar. Coming back to the flat takes a lot longer. It all has an effect. The weeks of sleeping with one eye open all the time. The constant uncertainty over medication. I sleep like the living dead for the first day. Not even a nuclear explosion could wake me up.

But that uncertainty doesn't leave. It just hides. Like the monster under the bed. Lurking until you think you've settled back in to a routine, then it hits you like a tonne of bricks...

.. Usually in the middle of the night. It feels wrong lying in my own bed I the dark listening to the silence. This is my house. I'm in my own space, meds are on time, I have control of my own movement, my own light. I get my TPN reliably. I don't have to fight for the basics. So why do I feel so lost and disoriented? I should be this way when in hospital. But it's not. There I have a routine. I wake at 6, have meds and start my day as the ward comes to. 10 is when the doctors arrive. Then self enforced rest at lunch time to avoid the smells and the sounds of food. Visitors arrive at 4pm. They stay till 7. After handover at 8, it's films whilst I wait for my night time meds.

"Heart Returns Home" an original cartoon by Rosie P

Home is the unknown. The unexplored frontier. I don't know where I am. The freedom is too vast. The choice of what to do too broad. Home feels like the dream. I'm not usually here long enough to form a proper routine. These things take time. And most of mine is spent away from my castle, in a distant land. From there the grass surrounding my home and castle looks greener, more luscious. But then again, things in dreams always seem brighter and shinier than they really ever were.

Home is scary because it should feel right and it doesn't. Home takes time to adjust to. Like a tiger used to its cage, suddenly released back into the wild. There's a million and one things to do and worry about. Is nursing and care cover sorted for the week? Do we have enough medications to see us through till the next trip to the pharmacy? When is the next batch of uni work due?

Oh god uni work. I'm behind. I tried to keep up in hospital, but resistance is futile so they say. No. I must keep fighting. Home wil become home again sure enough, and a new routine will form. Change is scary. And change happens AT home in my castle. Hospital is always the same. Predictably unpredictable.

The Flat of Rosie IS where my heart belongs, even if it does take it a while to get there.

Better late..?

I glanced at the clock, half an hour had passed. Time to poke the sleeping tiger again. If I was lucky, I might be able to catch my night nurse before she handed the keys over to the day staff at hand over. Spotting my nurse, I called out to her. She stood out in her agency scrubs like a sore thumb. Glancing up, we locked eyes, before she promptly buried her head in the folder, as one might do if they are trying to hide in plain sight.

"I can see you you know" I called coolly. Still she ignored me. Muttering darkly, tummy throbbing, I fumbled under my pillow for the ever elusive call button, trying hard to avoid touching any of the patches of silicone plastic that are scattered about its smooth surface. As the Orange call light flashed above my head at the entrance to the bay, and unable to ignore me any longer, begrudgingly she started to approach. 

"Yes?!" She snapped, lips curled in a snarl. Slightly taken aback at her tone, but aware time was marching ever forwards, I replied b politely, "sorry to disturb you, but I asked for some pain relief over half an hour ago?" The muscles in her clenched jaw twitched so much, I thought they would jump right out off her face!

She rolled her eyes skyward, reluctantly slouching off in the direction of the controlled drug room. Erghh! I know her type like the back of my hand. She had been nothing but rude, dangerously lazy and insolent all night, right from the moment she had first arrived on shift. Consistently late with medications, and refusing without a bitter debate to use proper sterile technique when handling my Hickman line. 

As far she was concerned, my life line required no more special treatment than a standard peripheral cannula... I mean that is what it is isn't it, a rather large cannula?! No. It's not. One can last years and will give you a life threatening infection in minutes, (such as sepsis) if mistreated, the other does not. 

"Handover" an original cartoon by Rosie P

I was jolted out of my thoughts by the tell tale rumblings of the computer trolley. Since their introduction last year, they have been at best cluttering up the ward, and at worst preventing patients from getting their medications, by amongst other things, deleting drug charts and running out of battery. At last I thought, some pain relief. Half an hour late, but better late than never. But when the trolley approached my heart sank. Three nurses stood crowded round it, so close they seemed to move as one. 

Handover. And they were 15 minutes early. I howled, mouth open in a silent scream of frustration. Now at best it would be at least another half an hour at the earliest until I would get some relief. The plethora of nurses stopped at the end of my bed, hand over began in earnest.  

"This is Bed 32..." said the nurse, waving her hand vaguely in my direction. I huffed indignantly, "I HAVE A NAME", I screamed internally. "She requested oxynorm, but I'd already given the keys to another nurse. It's fine though she's not in that much pain". In couldn't stand it any longer. 

"And how do you know that? Are you in my body? Can you feel the saw like pain in my joints? And stabbing spasmodic pain throughout my abdomen? Just because I am not screaming the place down like some people, (I glanced towards my neighbour), does NOT mean that I'm finding my pain difficult to bear!!" The accompanying hard stare I gave turned her a spectacular shade of crimson. Paddington would have been proud. 

"Manners maketh the nurse"

Manners cost nothing. I understand you are tired, that you have worked a long and difficult 12 hour shift. That you want to go home to your bed. But having a go at a patient because they are in agony and have had the sheer audacity to ask you yet again for their medication, which they originally asked for well over an hour ago, is not conducive to the situation.

You are not in charge here. The patient is not your subordinate. You are both equals. A nurse is a patient's hands and legs when they cannot move. They are a comforter and soother when pain is out of control. Respect is earned, and works both ways.

When pain relief is asked for, from the perspective of the patient, the message, (and the nurse), often seems to vanish into the ether, never to be heard of again. If no one has appeared by the half hour mark, doubt creeps in. Have they forgotten? Are they doing it? Am I not due it yet? We only press our buzzers to find out what's going on, not to offend or upset you. That is after all why they are there.

To misquote a character from the film Kingsman, "Manners maketh the nurse". 

Hospital buzzer