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 It's years out of date, but that alone is a good start.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

New life line

My hearing is always the first to come back after a General Anesthetic. The soft but insistent beep of the heart tracer, the melodic tone of a pump declaring that it had finished running

Me recovering back up on the ward.

fluids into its patient, the hushed tonnes of nurses checking vital signs. Sensation is next. Dry lips. Sore throat from the breathing tube. Stiff joints from lying in one position too long. It's confusing at first. Where am I? What's happened? I feel like I'm gonna be sick.

A searing pain across my chest washes over me. I groan . Hearing footsteps I try to see where they're coming from, but my eyes won't open. My muscles in my arms and legs are growing tighter, as if someone is winding them up.

"Rosie?" The owner of the footsteps calls. I try replying, but my tongue won't move. "Rosie, can you hear me?" The mystery voice is soft and kind. I feel a hand on my eyelid, lifting it up and suddenly the warm darkness disappears into a blaze of unfocused colour and shapes. The twitching in my limbs has turned to full blown kicks and thrusts, my arms taking on a life of their own. My chest spasms, breathing becoming shallow and laboured. The colour drains back to black, I can hear frantic footsteps, but they're growing fainter- like trying to listen to a whisper through cotten wool. "She's seizing, get the aneasthatist. She needs medazalam. Rosie? Can you hear me?"

I'm floating on an ocean of nothingness, and there's no one around for miles.

*******

Pseudo Seizures are a regular thing for me after a procedure. The doctors are still not sure why. The current theory of my neurologist is I have a condition called Functional Neurological Disorder. A fancy name that means "something's not working but we're not sure what". He thinks my nerves don't read the messages my brain sends them properly. As with any condition, it is made a lot worse by stress, and having an operation is about as stressful to a body as it gets. 

Diagram depicting placement of a Hickman line

Anyway, I digress. Yesterdays procedure was to replace my

broken Hickman* line, a flexible plastic tube that goes through the chest directly into one of the large veins that lead to your heart. It can be used for all sorts of things, but for me it delivers much needed medications, and all my hydration and nutrition for the day. I guess you could call it my life line.

The operation to have it placed is fairly straightforward. Whilst I'm out of it, dreaming away under General Anesthetic, the surgeon uses an ultrasound to find a suitable vein in my chest before making two small incisions: one just under the collarbone, the other in the chest wall. The new line is then threaded through the later into the vein under live X-Ray, the end of the line ending up under the collarbone and in the opening to my heart. Once the line is flushed and the surgeon is satisfied it is working correctly, the old line is pulled out (it takes some force, as it is designed to burrow into the wall of the vein over time to prevent it falling out by accident), and the two remaining holes are stitched.

By the time I fully came round yesterday I'd spent an hour in theatre, had had two pseudo seizures and had spent just over three hours in recovery. I felt like my chest had been used by an elephant for trampoline practice. But I know the worse is over now. The next few days will be tough, but I am tougher. 

* Hickman Guide from Guys and St Thomas Hospital