Living with Crohn’s Disease can really be tough at times. Sometimes I forget that I’m not the only one living with this illness…yes, I’m the one with the disease but someone else has to also live with the hospital appointments, the medications, the restless nights, the moon face, the constant toilet trips – Mr Crohn’s.
I was diagnosed after we’d been together for some years so he’s had to come to terms with it as much as I have but sometimes I forget about this. I forget how he must feel when he sees me in the middle of a flare up. I forget how frustrating it must be to have someone constantly dozing off or needing to run to the loo in the middle of films. I forget that hospital appointments are perhaps as stressful for him to see me go to as they are for me to actually be there.
I asked Mr Crohn’s a while ago if he fancied writing a little something about what it’s like living with a Crohnie and it had skipped my mind until I saw him typing furiously last night. He emailed me a copy, I went to another room to read it and I bawled my eyes out several times. I’m talking about a third of a loo roll used for eye wiping/nose blowing.
I really couldn’t ask for more from this man. He’s my fiancé, my best friend, my personal comedian, my rock, my love, my everything. The times I do think about how tough it is for him as well I wonder how the hell he deals with me. He’s nothing but patient, understanding and caring and somehow always knows exactly how to cheer me up whether it’s with a silly dad joke, a cuddle or just the amazing superpower of being able to pick exactly what film I need to watch to lift my spirits.
I really don’t think I could have done a lot of this Crohn’s thing without him and think it’s really important to share what it’s like living with someone with Crohn’s Disease from his perspective. I’ve waffled on enough now so want to hand you over to him…
Me and Mrs Crohns
Social Media can be a wonderful thing. For all of it’s obvious, inherent faults, in its purest form it allows connections to family, friends, and to find people treading a similar life path.
It’s helped Bridget immensely as she’s faced into the headwinds that come from having Crohn’s. That shared knowledge, the many kind words from fellow Crohnies, and the kinship of knowing ‘I’m not the only one’ that all help to keep the embers of energy burning. And embers are sometimes all you have. Especially when you’re scrapping against a chronic, invisible, energy sapping, time consuming, and downright shitty disease.
The way she’s been given a lift by her interactions, got me to thinking that for most Crohnies there’s also someone there alongside them, lingering outside loos, holding coats, running to the shops for emergency loo paper. They’re the ones that share my lifepath. We are Brothers and Sisters.
This blog is for them. I hope there’s some familiar ground below for them. If not, I’m just a massive git.
The Ballad of Mr Crohns
As a team, the loo-lingering Bridget and Darcy, we do all we can to face this together. But to be honest, it’s not always been easy. It’s certainly not what you sign up for in the first amorous flushes of a relationship. But it’s a relationship that still has plenty of flushes (the jokes only get worse from here on in). But she’s my girl. I’m her boy, and together, we try and hold each other up when the headwinds get too strong.
Firstly, some admissions.
There’s some bits in this blog that I’ve never told her. That I’ve never told anyone.
I forget she’s ill sometimes. Only momentarily, but it happens. I’m particularly prone to this after a long day at work and my own fatigue overcomes the empathy. I sometimes (probably often) break my life rule of ‘try not to be a dick’. Even writing this blog feels indulgent compared to what she goes through and all ‘woe is me’.
I get frustrated with Bridget at times.
When she falls asleep half way through that must-watch, water-cooler discussed prime TV show you’re working through together. Always, always at the very best bits as well.
When we’re ready to leave the house and there’s that all too familiar dash upstairs( We now have two definitions – ‘ready’ and ‘ready ready’).
Most of all though I get frustrated with my own complete inability to help her during flares, fatigue attacks and cramps. When she’s having those low days. The days when the world seems too much for her. All you can do is put a good film on, entwine the feet/hands, get under a blanket and for me to try and remember that farting in each other’s company isn’t acceptable in a grown up relationship (Like I said – I forget things). And also because Bridget, as a Crohnie, is insanely jealous of my ability to break wind safely and often with gay abandon. It’s strange the things you miss when they’re taken away.
Trying to keep everything in
I also hold a lot back. She has enough to worry about. I know I should share more but if often feels inconsequential and unnecessary.
For example she thinks the last time I cried was when our beloved cat Charlie passed away (That time watching Coco doesn’t count. That Cinema was incredibly dusty!).
In fact it was just after she was wheeled in for her Liver Biopsy. I’d made the mistake of googling the reasons why they run this test. Hint – it’s another disease that begins with ‘C’. I’d just about held it together until then, using my normal defence mechanism of joking about pretty much everything, right until the moment after she was wheeled in. Just as she was out of reach, she let out a sob. That broke me. Not being able to give her that final squeeze of the hand, that final joke. All overlaid with my own fears for her. No, that’s not entirely right. I was scared for me as well, that lingering thought of ‘what if it is?’ and ‘how will I cope?’.
As soon as she was through those famous hospital double doors, it was a race to the outside, a walk around the car park with tears streaming down my face, and not even a handy rainstorm to help disguise it. I am not an attractive cryer.
On the plus side, my experience as her Darcy has really given me some new skills – my coat holding and ability to find a hospital coffee shop are now second to none. Seriously, I could represent Team GB. Come on IOC. You know it makes sense.
And I’m also immensely proud of her. Even on the low days, the days where the spoons run out. She’ll set herself to face the world. You can almost physically see the moment when her brain goes ‘Right, let’s do this you fucker’. The set of the shoulders, the clenching of a fist, that first step towards the door – and then the sprint to the loo, followed by an under the breath expletive laden rant coming through the door. Then once again, the shoulders are set, the fist is made…
Above all, I love her. I love her steroid induced moon face. I love her hatred of my beloved hot weather. I love her falling asleep on the sofa so I get the bed (and cats) to myself. I love her reviews of loo paper. I love her. My missing spoons Crohnie.
She is my Bridget and (hopefully) I’m her Darcy.
So my fellow lingerers outside of loos, pausers of TV at the really good bits, midnight runners for loo roll, I know I’m not the only one going through all of the above. The frustrations, the fears, the tears. Share your experiences below or on whichever of her many channels Bridget shares it on. We are one. We’re all in this shit together.
Follow me on Twitter @RichLJones.