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. 

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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. 

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.

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?

expectations

I am having quite a hard day.

There’s not really any single thing making it hard. I woke up at a fairly normal time, spent my customary hour in the bathroom, and then had my usual post-ablutions snooze. Yes, really, the exhaustion is so real that something as simple as emptying my bowels (wow, talk about clinical vocabulary) and taking a shower takes ALL of the energy out of me!!

exhaustion

Hi. It’s 4pm (at the time of writing, at least), and honestly, I am knackered.

This is not at all unusual. I typically have a 2-to-3 hour nap most days, because I am just so wiped out all the time. And I don’t even do anything! Today I went to one lecture, came home, ate a hasty lunch, and then went out to a seminar. So, that’s a few hours of sitting down and about half an hour of walking time total. And I feel like I’ve just run five miles. It’s infuriating, and it makes me feel like the laziest being alive.