Easter Baking Extravaganza: Hot (Cross?) Buns

Being mostly bedbound and unable to eat DOES NOT have to mean you can't do something you love. For me, that's cooking and baking.

Mama and I had a busy fun filled afternoon Baking the first batch of Easter goodies: Traditional Hot Cross Buns, pepped up with cinnamon and citrus peel, as well as the ubiquitous sultanas. The day got off to a bit of a dodgy start. My scales were playing hide and seek, Mama forgot the second type of flour to make the essential crosses with, and the small measuring jug that used to be kept in the kitchen was turned into a bile bag measurer months ago.

Dry ingredients sifted & mixed

So, Mama made a mercy dash back to her home for the missing stuff as I pressed on, (weighing scales found), with measuring out the dry ingredients. I was so eager and focused on measuring out my two weighing tubs of flour, (my scales only go up to 450g and I needed 500g), that I had dumped the first lot of flour unsifted into our mixing bowl. It was only when I was halfway through measuring out the rest of the flour that I realised my mistake.

Big cook Little cook

Horrified at what Mama would say, the girl guide in me took over. I stopped my measuring,  took the tub off the scales so I didn't knock 100g of flour all over the bed, and got a nurse to help me spoon the mixing bowl of flour into an empty clean ice-cream tub. Cue some expert sifting, my mistake was rectified.

By the time Mama arrived back, all the dry ingredients, (flour, salt and sugar), we're ready in the mixing bowl and the yeast packet was in the process of being opened. Together we gradually mixed in the watered down milk until our dough was well formed but sticky. We turfed it out of it's pot and onto a chopping board on the bed. It was ready to knead.

Mixing decks

It's amazing what an impression something can make on you at a young age without you realising, even after only doing it once. When I was 12 I went on a school trip to France. On one of the outings, we went and made Pain Au Chocolat at a local Boulongorie. It was the only time I've kneaded bresd dough until today, but as soon as that dough was on the board and under my fists it all came back to me.

Rosie Kneads Dough

The hardest bit of the whole enterprise was getting the bloody sultanas, orange zest and mixed citrus peel into our dough. Oh my god! As soon as you pressed them in, the ones you'd put in earlier would pop out! It didn't help that I was trying to do this back in the mixing bowl as Mama cut the orange zest on the board. Occasionally I'd turf her off, Chuck the dough on the board and knead it a fresh. After a couple of repetitions, plenty of swearing and laughing later our dried fruit adversaries resolve started to wane. Exhausted, but with currents running evenly through we left the dough in its bowl to prove.

And boy did it prove. Double it's size, happy and majestic. I buttered the baking trays, and together we took handfuls of our springy dough mix rounding it into even sized balls until we had a good bakers dozen plus one good sized patties on our tray. Whilst waiting for them to prove again, we made our piping mix for the most scary and exciting bit yet: piping the all important crosses.

Crossing the Buns...

Ordinary flour, sugar and the rest of our milky water spooned into a crudely made piping bag, (plastic bag with the end chopped off). Both of us having never piped anything before, Mama had a go first to get the idea before handing over to me. Hmm... I'll say piping is not my forte yet but I managed 7 reasonable attempts all mostly cross shaped.

The next job was getting them home to Mama's house to bake. By this time my TPN nurse had arrived as well, (the clock had struck 8), just to add to the general melee. A washing basket commandeered for one baking tray, the other was placed in the box Mama had used to bring the equipment over with her. Both trays will be baked at home. Drive safely Mama, you are carrying precious cargo on board...

Tray 1 of Hot Cross Buns 

Tray 2 of Hot Cross Buns

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. 

********

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.

Is it a bird? Is it a plane? No, it's Flamazine!

"Is it a bird? Is it a plane? No, it's Flamazine!" An original cartoon by Rosie P

Well, my course of the mysterious cream is at an end. Although the PEGJ* infection is definitely still there, it is by no means as swollen or painful as it was. And as a bonus for ten it didn't dissolve my surrounding skin, or finger tips when applied AND even helped the burnt skin surrounding it heal- Yay! 

As ridiculous as it sounds, the cream dissolving my skin was a real fear of mine. It's main component, Silver Sulphadiazine, is great at dissolving extraneous tissue and has antibiotic type properties. As a result all the literature says to use gloves and a spatula to apply it. Of course it didn't come with either of these, so I had to improvise. Thanks to my care company's constant over stocking of supplies, I have more than one spare set of gloves. As for the spatula replacement, that was easy- cotton buds! Which is also a lot kinder on the sore tissue than a sharp edged plastic spatula. 

Of course, in true hospital style, the cream just turned up in my bedside locker one day, with no explanation, let alone any instructions as to how to use it. Hell, it took me the best part of two weeks to work out what it was and where I was meant to be putting it, and that was all by complete accident. Once again, thank god for instruction books and not being a half wit. 

One of my dear friends told me it had been used extensively before the discovery of antibiotics to help treat burns, partial finger amputations, severe ulcers and skin grafts. It was the go to cream by all accounts. But nowhere did it explain what to do with PEGJ stomas. Queue plenty of beard stroking and discussion. I had detailed instructions of what to do if it was a burn or an ulcer, and due to stomach acid leakage there was one present, so... that will do. 

It may not be completely infection free yet, but this is the most comfortable my PEGJ stoma site has felt since it was placed 3 months ago by far. One more course of antibiotics, which my GP prescribed yesterday and I can hopefully wave goodbye to this Staph bug once and for all! 

Zebras vs Horses: What is a Zebra?

I have been asked a lot recently what Zebras have to do with Ehlers Danlos Syndrome. A Zebra in the medical world is someone with a rare and highly complex condition, such as EDS:

 “When you hear the sound of hooves, think horses, not zebras.” (Ehlers-Danlos Support UK, Why the Zebra)

The expression above is hammered into medical students throughout their doctoral training. The analogy serves to remind them that the simplest explanation and diagnosis for an illness,

"We are a Rainbow of Possibilities" by Rosie P

(the horse) is often the right one. As a result, when diagnosing a patient, doctors learn to expect relatively common ailments. Rare gets forgotten. This tends to lead to years of misdiagnosis, sheer ignorance and sometimes the sufferer being forgotten altogether and pushed from pillar to post with little in the way of answers.

Diagnosis usually comes years later, from some bright spark who considers rare and embraces it.

One of the things that makes EDS hard to diagnose is no two sufferers present in exactly the same way. Just as no two zebras bare exactly the same pattern of stripes on their coats. Some have different types of EDS. Others with the same type may have only joints affected, whereas others joints are fine but their internal organs are not. There are an infinite number of combinations, each unique to the person they belong to.

“Sometimes when you hear hoofbeats, it really is a zebra.” Ehlers Danlos Sufferers are known as Zebras. Unique, rare and proud. 

"Why the Zebra?" Explanation poster from dailykos.com

Sources: Ehlers-Danlos Support UK (2017), Why the Zebra- Ehlers-Danlos Support UK, [online] Available at https://www.ehlers-danlos.org/about-us/charity-aims-and-focus/why-the-zebra/ (Accessed 7 February 2018)

The Ehlers Danlos Society (2017), Why the Zebra- Ehlers Danlos Society, [online] Available at https://www.ehlers-danlos.com/why-the-zebra/ (Accessed 7 February 2018)

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.