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 It's years out of date, but that alone is a good start.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.

Lady Sleep

Life with a Chronic illness involves a lot of waiting. Be it for new tests, or medication, or in doctors waiting rooms. Today has been spent waiting for energy that never came.

I'd promised myself that I'd get up early to start my new out of hospital routine, but when the alarm went off at 1030 as planned, I couldn't quite bring myself to wake up, so turned over to drift back into the comforting arms of sleep.

By the time I next came to, the clock had struck 1300. I leapt out of bed like a cat on a hot tin roof. Well, I say leapt. Truth is, I can't "leap" anywhere. It was more a crawl with the enthusiasm and speed of a sedated snail. My limbs felt heavy, uncooperative. Like they belonged to someone else.

I felt incredibly guilty that I'd given in and slept when I should have been awake and starting my day. My Brain was not my friend. It was muddled and foggy. Truth be told, I was wishing the hands on the clock to hurry round, counting the hours till I could wrap myself up in my favourite purple blanket and snuggle up with my hot water bottle and sleep.

"Brain Goes Sky Diving" an original cartoon by Rosie P 

But when that time does come, sleep does not. Instead my Brain is busy telling me all the things that it wants to do. Sky diving. Kayaking in Scandinavia. Exploring the Pyramid's in Giza.

Then it hits me. I cannot do those things anymore, so I mourn.

Before I know it, it's 0330 in the morning and I've not had a drop of sleep. I worry that I won't be able to get up again. The cycle will begin a new. Striving to achieve routine, yet always failing. The clock ticks. "One second less sleep". My Brain comments. The more I count the seconds, the further away from me sleep gets. My breathing quickens, panic setting in.

Just breathe I tell myself. Slowly. Focus on the cool air rushing in through your nostrils, flared and tense. Then the air leaving through your open mouth, lips pursed, the freshly warmed air tickling them. Feel your chest expand and contract.

Focus on the miracle of breathing.

Calmer, sleep starts to creep forward. She's like a shadow out of the corner of your eye. As soon as you look at her she vanishes. Gradually, with my attention focused on breathing she approaches, gently wrapping me in her warm embrace.

"Tomorrow is a new day" she whispers gently "what will be will be".

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