SURGERY #2: The Aftermath

The first two weeks after my surgery were the hardest for me. Not physically – that was difficult, yes, but not for long – but mentally. I felt like I had been dropped from a plane into a pit: flying high to suddenly sink desperately low,  no rope or ladder connecting the two. No way to carry myself back out of the depths. 

Advertisement

Hello, Hickman: Insertion + Healing

How is it that the words ‘nil by mouth’ manage to trigger the most intense hunger and thirst you’ve ever known? I’m uncomfortably hungry and, consequently, uncomfortably cranky. Every minute seems to stretch on for eternity, but also fly by like a loosed arrow. Time seems to loop back on itself like a Möbius strip, both molasses-slow and lightning-fast. I lay back against my pillows in exasperation. I have felt like this a thousand times, but I won’t ever get used to it. 

I loathe the waiting period. If anything needs to be done to me, I’d much rather it happen first thing in the morning – or that I do not know about it until immediately beforehand. Luckily, there’s only about an hour more to wait before I’m wheeled down to have my Hickman line inserted. I’m terrified, but eager at the same time. Knowing I’ll be getting sedation helps, but until the procedure is underway, nothing can quiet the anxiety in my brain, buzzing away like so many bees. 

Another Orbit

Happy birthday to me! If you follow me on Instagram (or Twitter), you’ll have seen that I’m currently in hospital. What a way to spend your 21st birthday, eh? Shackled to an IV pole in the hospital.

…and getting it back again

Happy belated World IBD Day! What better time to get back into blogging? If you read my last post, you’ll know that I was in a bad place in the early months of the year. Now? Well, not much has actually changed, honestly. I’m still experiencing the same symptoms as ever. Infliximab might as well be saline for all the good it’s done me, after six months/five infusions. Exam season is upon us, stress is oozing out of my every pore, and I have an MRI booked for June because my bloods aren’t showing any kind of improvement. By rights, I ought to be feeling as terrible as I did in February. But now things feel different, and I’m in a better position to explain exactly what was going on in my head then (and now!). I want to document everything – the good and the bad – and that starts with explaining why I’ve been so silent these last few months.

Gastroenterology Appointment: September 2018

Okay, so, here’s the tale from my updates post that I started to write, before realising it was waaaaay too long and it would need its own post. I always think “oh, nothing much happened,” and then I start writing and actually A LOT HAPPENED. But, spoiler: we’re still no further forward than we were six months ago. How can that be, I hear you ask? Well, let me start from the beginning..,

(My) Mental Health and IBD

It’s World IBD Day! It’s Mental Health Awareness Week! I hope both of them are good to you. It’s quite an intersection of ‘awareness days’, isn’t it, considering the mental toll IBD exacts? So there’s no better time to write about when the two collide spectacularly! Here’s my tale…

2.50am

This is something (almost autobiographical in nature) I wrote in the early morning, after an accident that roused me from sleep. It’s mostly about fear: an attempt to describe it for those lucky enough to not feel it follow them around like I do, and how it feels in those moments when I can’t suppress it.

The girl steps into the shower, the door sliding shut with a soft thud behind her. She blows out a breath, shaky and uncertain, and twists the first knob to unleash the torrent of water from above. The water is supposed to strip everything away: not just dirt and dust but guilt, shame, fear – all sloughing off of her body and disappearing down the drain with the water. This is where she is safe.

A Day in the Life: May 2017

Remember how I said I’d be posting for each day in Crohn’s and Colitis Awareness Week? And then remember how, immediately afterwards, I didn’t do that? Yeah, me too. I’m the worst, I admit it. Honestly, it’s taking up everything I have just to keep up with uni at the moment with exhaustion kicking in – as you’ll see by the end of this post. I’ve been toying with the idea of doing a day in the life post for quite some time, but always forgot until halfway through the day – until now (or, er, Thursday, which is when this post was originally drafted). So here’s what a fairly typical day looks like for me…

Diagnosis

It’s the first day of Crohn’s and Colitis Awareness Week – happy #PurpleFriday to you all, and I hope you’re doing well – or if you’re not, that you’re doing as well as you can be right now. I’m hoping to publish one post per day for the entirety of this week. We’ll see how it goes – but to kick-start the process, I thought I’d make it a long one, and share something I’ve never written about in full before: my diagnosis story.

Humira Update: 10 weeks in!

It’s Friday! Like every Friday, I’m in a better mood than I have been all week. Today, though, there was an extra spring in my step, because (just like I have every fortnight for the last 10 weeks) I had my Humira shot. And it dawned on me that I’ve gone so long without writing a real blog post – so why not update you on how it’s going so far?