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

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.

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.