Living with Ulcerative Colitis & How it Affects my Mental Health

It’s the 19th of May today, which marks the end of Mental Health Awareness Week in the UK and the beginning of World IBD Day. I’ve decided to share this blog because I’ve lived with Ulcerative Colitis (a form of Inflammatory Bowel Disease) for 16 years and, as with most chronic illnesses, my mental health often takes a battering because of it.

The crossover in dates gives me the perfect opportunity to talk about a depressive episode I suffered in 2018 whilst taking a course of Prednisolone steroids to treat my Ulcerative Colitis (UC), and  the way I approached my most recent UC relapse in January 2019 whilst taking a “new” type of steroid called Cortiment.

Firstly though, I’d like to focus on something positive. I’m happy to say my UC is currently in remission and I have minimal symptoms. This is most likely due to me starting a new treatment called Vedolizumab, which is a drip infusion that I go in to hospital for every two months. I am also taking a break from my 100mg daily dose of Azathioprine (an immunosuppressive drug) because my white blood count is too low. Whilst this could lead to a relapse, I can’t deny that my mood has generally improved, and the feeling of “heaviness” I sometimes experience in my head on this drug has become much lighter.

Since I was a teenager, I have always turned to the pages in my diary to make sense of what I’ve felt, but when I began a course of Prednisolone to treat my UC in March last year, I couldn’t face recording how awful it was. I’ve actively avoided writing about it because I’ve been concentrating on feeling better – but part of getting better (for me, at least) is looking back at what I’ve gone through, and feeling reassured that I’ve survived it.

So, I got ill again in February 2018. Really ill. My worst relapse in the last 3 years. Relentless gut aches and shit and blood and diarrhea: all the glorious symptoms of IBD. I was in pain all day. I had pain before, during, and after opening my bowels (which was up to 10 times a day) and my rectum took such a hammering that if it had tear ducts, I think it would’ve wept on my behalf.

I practically begged the doctors for Prednisolone because I knew nothing else would work, and despite knowing it would send me in to a depressive state – or “steroid haze” as I like to call it. I popped some Prednisolone pills and waited for the awful side affects to kick in. Within 3 days my IBD symptoms improved, but my mental health declined. I became more heavy-headed, was in a constant low mood, and felt overwhelmingly tearful, paranoid and anxious. I have blogged about the severity of the Prednisolone symptoms before, so read here if you’d like a bit more insight.

As always though, most people will not have noticed this happened to me. I made it in to work almost every day, I still went to gigs, I socialised, I kept going. The idea of sitting in my room all day with my own horrifically negative thoughts was something I absolutely could not entertain. I count myself lucky that I was able to get out of bed and keep going, even if I did it with the maximum amount of unease and sadness.

I had to cart pots of my own shit around (samples that needed testing, not just for some weird form of fun) delivering them to the right hospital department, I had countless blood tests, and visited the pharmacy on multiple occasions because they didn’t have enough Prednisolone pills initially. All this, whilst pretending to be absolutely-fucking-fine because I did not want any anyone to know how unwell I felt. I have been trying to get to the bottom of why I try to hide these really important things from people, and the only justification I have is that I like to be seen as strong, dependable, and in control – when you have IBD it robs you of these qualities.

Whilst all of this was going on, I also happened to be dating someone who was kind, open-minded, and patient whilst trying to understand what was going on with me physically and emotionally. I kept blindly insisting I was “fine” because I wanted to convince myself, and him, that I was. But, it turns out, words aren’t a cure for chronic illness or steroid hazes – because if they were, his reassurances would’ve sorted me out in no time. Looking back, I also think I managed to hide a lot of this from him even though I was trying to be honest about it, so perhaps he was genuinely unaware of how unwell I was.

I do have some good news though!

This particular relapse made me realise that I’ve been living in denial about the impact UC has on my mental health for years. This prompted me to seek help. I had in depth discussions with my IBD doctors about the affect Prednisolone has on my mood, and they openly apologised to me for not acknowledging the severity of the side effects earlier in my life (particularly when I was 18). We  agreed that next time I suffered a relapse, I could try a “new” steroid called Cortiment. Cortiment is engineered to target the gut only, unlike Prednisolone which affects the whole body – no nasty mental health side affects!

They also booked me in to talk their IBD mental health specialist. I could be bitter and complain that “they should’ve done this earlier” because I needed this support when I was 18, but in reality their job is to treat the physical symptoms of my IBD (which they always have), and after living with the illness for 16 years I have realised that it’s as much a learning curve for my (incredible) team of doctors as it is for me. The impact IBD has on mental health is something that’s only starting to be addressed now, by patients their doctors and the NHS as a whole.

Whilst I was waiting for this specialist appointment to come through, I was fortunate enough to have the funds to start visiting a private counsellor. This is one of the best decisions I have ever made. It may sound obvious, but I had no idea that simply talking about how much of a struggle it is to live with IBD (and how it will knock me down unexpectedly in the future) would help. I’d never learned to talk about it. Counselling allowed me to sit with those feelings of grief and shame and realise that telling people what’s wrong, and asking for help is key to my recovery, both physically and mentally.

So, in January 2019 I had another UC relapse. Again, it was brutal. My New Years Day started at 6:30am with me trapped in the bathroom, unable to leave the toilet for 2 hours. I was almost retching because my abdominal pain was so bad. I wanted to cry (and I probably did later that day), but I made the proactive decision to get in touch with my doctors and get on a course of Cortiment steroids. I also told work about my symptoms and asked for some flexibility with start times and hospital appointments, and I told my (then) boyfriend that I wouldn’t be able to stay over at his place until my symptoms calmed down. I couldn’t control what was happening to my body, but I could control how I dealt with it.

Some more good news: Cortiment steroids worked and my mental health was unaffected! They took a fortnight to kick in (much slower than Prednisolone) but once they were properly in my system, my symptoms reduced and I made my way in to remission. I continued with my counselling, and I am pleased to say it was the smoothest relapse I’ve ever had, because I was honest with myself and with everyone else around me about the limitations UC puts on me. I stopped counselling at the end of January this year, and I feel prepared to face any future relapse with the same outlook.

I should also say that my very good friend Katie was diagnosed with Crohn’s Disease (a sister illness to UC) during the time between my two relapses, and whilst I wish she never had to hear that diagnosis come out of a doctor’s mouth – I cannot tell you how unbelievably vital her own experiences of IBD have been to me. Our WhatsApp conversations now consist of a mixture of messages like “Can’t wait for dinner and drinks tonight!” and “I’m so bloated and gassy right now, plus I shit blood this morning lolzzzz”. We have been coaching each other through endoscopy tests and medication adjustments for the last few months and have helped each other to accept that living with IBD is shit – but we can live with it, and it’s a lot easier if we can live through it together. We’re planning to start a Podcast about it actually, which will quite literally be full of shits and giggles.

So many people are struggling with a chronic illness and so many people have similar experiences to mine, and yet, it still takes me an essay like this to feel okay about it all. And, despite ignoring the need last year, I do need to write about it when it all flares up again. Shit things happen, and sometimes just admitting that makes everything a whole lot easier.

If you’re living with IBD and need more information or support, check out the Crohn’s & Colitis UK website (or drop me a line if you like x)

 

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SUNDAY #96 – New Year

This time last year, I wrote about why I hate New Year’s Eve. I then went back and deleted the blog because it was moody af, and I figured I didn’t want that sort of thing on the internet. I then went out on NYE 2017 and drank so much gin/tequila to compensate for the moodiness, that I spent all of New Years Day dashing to the bathroom to violently throw up that gin/tequila. It’s the worst hangover I’ve ever had and it prompted me to do ‘Dry January’ (which I achieved, and which I’ll be doing again this year too). I can’t believe I survived that hangover, let alone the last 360-odd days. I’m a walking miracle.

I’m not alone in disliking NYE, and whilst my life is pretty secure and I’ve been very happy this year – I find feeling low on the 31st is unavoidable for me. So, I thought I’d write this blog to say it’s alright to hate New Year’s Eve. It’s alright if you want to pretend it’s not happening and to go to bed early. It’s alright if you want to just to go a mate’s house for dinner and then get the night bus/tube home afterwards. It’s alright to not feel like yourself if you’re out trying to celebrate it. It’s alright if no-one kisses you at midnight. It’s just another day of the year, and all the good stuff commences from January 2nd onwards.

Stay off social media if you can, hang out with people who will tolerate your hatred of NYE, and most importantly: don’t stress-drink gin and tequila to the point of your own destruction.

Happy New Year (I guess…)

SUNDAY #95 – Mice On The Underground

This blog comes to you from a sofa in Essex, from a non-hungover human, who’s petting a miniature dachshund. It’s the first post since January of this year, and it’s about the tiny mice you see in the tunnels of London’s Underground stations.

No matter how bad the day has been, when I see the mice darting between the tracks and the platform, I feel better. It’s odd how something so small, brings me so much comfort. It’s also odd how I deem what’s technically “vermin” exceptionally cute, but I’m willing to live with that. If that little mouse can thrive down there, I can certainly survive whatever’s happened to me up here on the platform.

Part of it is nostalgia, as a kid I owned pet mice, and that desire came from watching (and reading) the Brambly Hedge series, written and illustrated by Jill Barklem. My brother and I named our mice after the characters – we had three pairs of mice over the space of a few years – Snowy & Primrose, Wilfred & Blackadder (the latter not a Brambly Hedge character, obviously), and Snowy II & Primrose II (imaginative, I know). The last pair even had a litter of babies, which absolutely made our childhood. We kept one, and I called her Bramble.

It’s the memory of Bramble’s fur colour that makes me smile when I see those little soot-covered mice skitting around on the train tracks. I love the way they brave the edge of the platform, pausing cautiously, before cruising past my Dr Martens to get to wherever they’re going. It all looks like a game. They look hassle free and oblivious to the tonne of metal that routinely flies above their heads. They’re content to exist in the darkness and chaos – filthy, feral, and free.

You could apply that to living above ground in London as well. Living here is hard. It’s expensive, overcrowded, and at times it’s unfriendly. I moved here less than two years ago, and at times I have doubts about whether I really fit in here. Don’t get me wrong, I’ve made some great friends, met my boyfriend here, and I have a great life in this city – but it often leaves me stressed and pent up. Sometimes I spend my weekends sitting in my room because I can’t be arsed to deal with the busy streets and lack of greenery. London often makes me feel anxious and occasionally, really bloody lonely. But strangely, whilst I was away in America for two weeks for my Brother’s wedding last month – I pined for London. I guess it takes something as big and brilliant as going to America to make me realise that I do love living in this city, and that something as small as a rogue mouse in a tube station is what I need to keep me going (among other things, of course).

So, next time you see a mouse on the tracks, I hope it makes you smile. I hope it helps you to realise you do fit in, and despite all of the stress and worry, it’s well worth living here. If the sight of the mouse makes you shriek however, fair play. Hopefully you have another form of distraction in this smoky, sublime city.

SUNDAY #94 – Bowie

I was alone in my living room back in Essex when I first heard the news David Bowie had died. My Dad & Brother left early for work, so when  I switched on the TV and saw the headline on BBC news, I felt cold.

My head was lead-heavy all day. I couldn’t concentrate properly at work, so I listened to Lauren Laverne’s special broadcast on BBC Radio 6 about the icon and tried not to cry. I thought about my Mum, who has loved him most of her life. As a teenager, she ran off to Milton Keynes with her friend to see him live, then got stranded and had to sleep at the train station. There’s not many people who are worth that kind of effort.

I’d only just got in to Bowie (even though friends had been recommending him to me for years) and I felt like my efforts to finally understand and love him had blossomed too soon. For months after the news, I’d get tearful when I got pissed up and heard ‘Let’s Dance’ playing out in a club or a bar. I felt silly for having such a strong reaction to the death of someone I’d never met, and who’s music I’d only been listening to for two years.

When someone like Bowie has such life-affirming appeal, it’s hard not to attach yourself to his ideas and his art. He has a song for every occasion, every emotion, every moment; even those gin-soaked few seconds in night clubs when you lose yourself and realise you still miss him.

Fortunately, his diverse and extensive discography means there’s always plenty of tracks to listen to, dance to, and be comforted by. Here are my favourites…

Lady Grinning Soul
The opening piano gives me goosebumps every time. I still pirouette around my room regularly to this. Aladdin Sane is probably my favourite Bowie album.

I’m Afraid Of Americans
An apt title and a belting chorus. The video shows Bowie being pursued by Nine Inch Nails frontman Trent Reznor, who helped him remix the track.

Rebel Rebel
The red hair, the red trousers…got me (and my Mother) in a whirl.

Let’s Dance
Still makes me tremble like a flower.

Heroes
I defy anyone to not feel better after listening to this. I played it after I handed in my final Open University assignment and felt infinite.

Life On Mars
Still hooked on this piece of cinematic, sweeping, blue-eyeshadow wearing glory.

Personal Highlights of 2017 (aka more musical ones…)

You’re probably sick to death of these ‘Highlights’ blogs, but I love making lists and reminiscing…so get on board, or get over it.

I spend 99% of my time listening to, looking for, and writing lovely things about women in new music, but – contrary to popular belief – I love writing about men in new music too. WHAT?! A FEMINIST WHO LOVES MEN?! SHOCKING! *keels over from this unexpected revelation*

2017 was a turbulent and frightening year (and I’m not just talking about my Glandular Fever diagnosis), but it would’ve been far worse if I hadn’t discovered these bands/artists. So, if you want a quick distraction before you wave goodbye to 2017 soaked in gin and your own bitter tears, take a look at the musical offerings that made my 2017 so bleedin’ good…

Everything Twitcher Records released this year melted my mind.

The independent label based in Brighton has a penchant for all things strung-out and unsatisfied, and I smiled like the Grinch who stole Christmas each time an email holding precious musical cargo appeared at the top of my inbox.

If you’re in to scratchy guitars, delightfully droning vocals, and introspective lyrics, you need to check out the bands on their roster. It was hard for me to pick a favourite, but I listened to Collapse Of An Easy Sunday, the debut EP from the weird and wonderful Honey Creeper multiple times when I was hungover/bored at work. Check out Ezeikel Doo, Slabtoe., and Die Mauer too.

Wolf Alice’s ‘Yuk Foo’ was one of the first pieces of new music I heard after my 21-day-Glandular-Fever headache finally subsided.

I’ll never forget the sheer sense of simultaneous joy and relief I felt hearing Ellie Rowsell shout the words “you bore me to death!” the first time I heard this song. It’s since become a personal anthem.

Don’t think I’ve mentioned a band called Ho99o9 before? (LOL JK. seen them 5 times this year)

My anticipation for their album United States of Horror was palpable, and it sparked what most people would deem a borderline inappropriate obsession with the rap-punk duo. Their political, aggressive, racially charged lyrics align perfectly with the manic drums and thrashing guitar samples.

Each time I’ve seen them live I’ve emerged with all sorts of physical damage – a black eye, swollen knees, bruised hips, ripped fingernails – and I left their Sebright Arms gig topless. What can I say? They bring out the be(a)st in me.

(Ho99o9 also led me to find Bob Vylan, who is 10/10)

I listened to Bjork’s divine new album Utopia, thus keeping my 2016 New Years Resolution to “listen to more Bjork“.

NO, YOU’RE CRYING AT THE BEAUTY OF ‘The Gate’. PULL YOURSELF TOGETHER. FFS.

We launched the Get In Her Ears website alongside our radio show and live night, and it might just be the best thing we’ve ever done.

On the eve of the launch of the Get In Her Ears site, there was a part of me that felt genuinely concerned. What if people didn’t read the blog? What if no-one shared the link? Have we made a mistake branching out on our own? Fortunately, I’m glad to report all of these anxieties subsided within 24 hours. We’ve received so much interest, love, and support from bands and fellow journalists, that it’s wiped away all the doubts I ever had.

I hope 2018 is just as prosperous and proactive for us.

SUNDAY #92 – Truly

Hangover rating: 6.5/10

Can’t stop listening to: Nova Twins  ‘Mood Swings’ & Cigarettes After Sex’s ‘Truly’.

Gigs attended: Mac DeMarco @ Coronet Ballroom

I’ve just emerged pink and clean from a steaming hot bath, and I’m feeling sentimental about all the old faces I’ve seen in the last seven days.

I went back to Southend on Tuesday to throw myself around a mosh pit for Suspect‘s video shoot (fell flat on my arse – 250 quid forYou’ve Been Framed ) and I’ve just returned from Brighton after spending the weekend with my best friend John and his pals.

I’ve had about 4 hours sleep and 60+ cups of tea, so I imagine I’ll conk out after writing this.

Not really sure what I want to say, other than thanks, and sorry for taking about a century to write another boring blog. New (slightly less) boring blog coming next week…

SUNDAY #91 – Dreams

Yesterday, I got dolled up and spent the afternoon with the ultra cool Dream Wife girls at their fake prom video shoot. Today, I scrubbed away the mould growing in the grout between the bathroom tiles and didn’t put any make-up on.What an eclectic weekend.

I replied to their call out on Facebook for people to get involved in their shoot for upcoming track ‘Let’s Make Out’, and before I knew it, I was in Dalston, slightly pissed at 2pm on a Saturday afternoon, wearing a dress I wish I’d worn to my real school prom back in 2006.

Walking in to the venue was surreal; the Dream Wife girls greeted me in costume with flame eye make-up, and there were balloons and streamers all over the place. I took a seat and watched a group of very trendy young things dancing around and making out with each other, and it felt like the coolest hallucination.

I didn’t have a make out partner (much like at my real Prom lolz), but I had a sparkly dress and a few sparkling glasses of Prosecco, so I was 100% loving life on the sidelines. Sod going back to reality.