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)

 

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…)

Dream Wife 4 Lyf

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.

6 Things I’ve Learned From Contracting Glandular Fever

I’m not the first person in the world to contract Glandular Fever and I won’t be the last, but I’m coming out the other side of the virus and I finally have the strength to make jokes(?) about it. 22 days ago, I woke up with a stabbing headache and a high temperature. “Oh it’s probably just a 48 hour thing” I jested to my parents, so I took it easy over the weekend and consoled myself with my own (massively incorrect) diagnosis.

A few days later, I almost blacked out in the shower. Like all responsible adults, I called my Mum and told her I couldn’t get registered in time at a new doctor’s surgery in London, but I was also too feeble to make the train journey back to Essex. BROTHER JOE AND HIS VAN TO THE RESCUE! Once I was back in Essex, my symptoms escalated and I ended up spending three nights in Hospital, even though my GP originally insisted I had a “water infection”. Turns out, I’m not the only one who’s good at giving massively incorrect diagnoses.

The good news is I’m finally feeling better, so I thought I’d share a few things I’ve learned during my time as a pain riddled, frustrated, incredibly relieved survivor of this Godforsaken virus….

 

  1. Glandular Fever is fucking awful

Glandular Fever is commonly known as ‘The Kissing Disease’. It only takes one saucy bit of lip action to contract it, so I find it hilarious (and cruel) that I caught this adventurous and licentious disease when romantically, things have been very tame for me recently.

The virus struck me down like a bolt of lightning. I couldn’t sit up straight for more than five minutes. I had a constant headache for 17 consecutive days (which baffled all of my doctors) and I spent all of my time horizontal, sleeping, or counting down the hours until I could take more Paracetamol (which felt like placebos towards the end). There’s no cure; you simply have to rest, avoid alcohol, and not engage in contact sports for 2-4 weeks. GREAT.

  1. DON’T GET WORKED UP IF YOU HAVE A TEMPERATURE, OKAY!?

Despite my general sunny disposition and optimistic heart, like most formerly shy kids with a point to prove – I have a volcanic rage burning inside of me. I am an expert at channelling, concealing and controlling it, but when I’m in severe pain or I have to keep repeating the sentence “IT’S NOT A WATER INFECTION” to multiple people; naturally, the rage begins to flare up.

On my second day in hospital, I was told by the doctor that if my bloods were clear, I would be discharged later that day. After the worst night’s sleep of my life (see next point for full details) this news genuinely comforted me. Fast forward a few hours, my temperature had risen by 2 degrees, and (quite rightly) they decided to keep me in for observation for another 24 hours. Internally, I erupted. I couldn’t make eye contact with my Mum, the doctor, or any other patients on the ward. I. Was. Livid.

Little did I know, getting angry or upset whilst you have a temperature causes your temperature to spike. My internal emotional combustion made my second night in hospital even more uncomfortable, so I resolved to CALM. THE FUCK. DOWN. and do everything I could (aka lay still and count the ceiling tiles) to make my mind and body cool again.

  1. The NHS is great, but you’re a joker if you think Hospitals are a good place for rest/sleep

Obviously, I love the NHS. They’ve kept me alive and properly medicated since I was diagnosed with Ulcerative Colitis in 2002, and for that I can’t fault them. However…

Having a prolonged headache made me extremely sensitive to any kind of noise, so much so that I had to wear the ear plugs I would usually wear at gigs to gain any kind of relief from the unbearable sound of everyday life. After a lengthy amount of time in an exceptionally loud A&E assessment ward, I was transferred to a proper ward at around 22:00, and much to my relief, the patients were nice and quiet. Hello restful, rejuvenating night’s sleep….

ONLY JOKING! As soon as my head hit the pillow, the ward burst in to life. The woman in the bed opposite me decided to strike up a conversation with the woman to my right about how inadequate her husband’s cooking skills were (that dragged on for 50 minutes). At approximately 3am, another patient decided to rip out her tubes/cannulas because they were “uncomfortable” and then complain that she was in pain when the nurse had to put them back in TO KEEP HER ALIVE. There was also an unfortunate soul who insisted there was something wrong with her catheter as she (quite disturbingly) yelped in pain, only for nurses to tell her she’d tangled the bloody tubes around her leg which is why it wasn’t working properly.

Finally; there was the heathen who slept through the whole night SNORING LIKE A PIG WHILST I SUFFERED NON-STOP WITH MY MIND-NUMBING HEADACHE UNTIL 6AM THE NEXT DAY WHEN I HAD TO CONSTRICT MY SHITTY CORNFLAKES AND AVOID EYE CONTACT WITH EVERYONE ON THE WARD (INCLUDING STAFF) WHO’D KEPT ME AWAKE, JUST IN CASE I SNAPPED AND SMASHED THE ENTIRE WARD TO PIECES. I hope this offers some insight as to why my temperature spiked when they told me I couldn’t go home…

  1. Codeine is the devil

“Take codeine” they said. “It’s stronger and more effective than Paracetamol” they said. These statements are true, but my body had other ideas. Codeine made me drowsy, it made me vom vom vom vomit, and best of all; it didn’t get rid of my headache. Fuck you codeine. You betrayed me.

  1. Not being able to listen to music is torture

A music journalist who can’t listen to music? Classic.

A heightened sensitivity to noise coupled with a chronic headache robbed me of the ability to distract myself with my favourite albums, and stopped me from attending all of the gigs I had penned in my diary (I missed Ho99o9’s gig at Underworld last week, definitely cried about that).

When my headache miraculously disappeared a few days ago, I cautiously watched Placebo’s live DVD ‘We Come In Pieces’ and it healed my heart and ear drums. Chelou’s ‘Halfway To Nowhere’ has also been an exceptional tonic.

  1. I feel a bit broken

I’ve tried to avoid being too aggressive or melancholy whilst writing this (lolz), but truthfully; Glandular Fever has scared the living daylights out of me. I can see the funny side now the headache’s subsided and I’m able to walk up the stairs without feeling like my legs are going to give way, but I’m worried about going back to ‘normality’ in this weakened state.

I’m having trouble sleeping because I keep thinking I’m still in hospital with a cannula in my arm, and I know that not drinking alcohol for the next few weeks is going to be a struggle for me. I also keep getting emotional when I think about having to leave my family home and go back to looking after myself in London again. In terms of independence, I feel like I’ve regressed about 15 years.

I guess those fears will evaporate in time, so I’ll just have to hold on to the hope that I’ll be fit and healthy again next time Ho99o9 are back in town.

Up yours Glandular Fever! (and thanks Mum, I’m a husk without you).

Taking The Absolute Pierce…

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You never really know what type of person you are until you accidentally rip your nose stud out 365 days after you’ve had it put in. This happened to me on Friday night, and I realised a) my pain threshold is still skyscraper high, and b) I really don’t have any major life problems if I can reduce myself to tears over a tiny piece of missing titanium.

There it was, twinkling like a lonely star on the bathroom floor tile. I promptly picked it up and tried to ram it back in, but it’s one of those weird cork-screw studs; so my stupid, panicked hands couldn’t do it. I knew I had to be out of the house in 30 minutes, and I was still in a bath towel, eyes streaming, with a bloodied hole on the side of my nose. I abandoned my attempts to reunite metal and flesh. The next day, I fought in vain to get the stud back in, further butchering my nostril.

When I originally got the piercing, the gentle giant who put a hole in my face was amazed by my reaction. My eyes didn’t stream, I didn’t flinch, and I had to ask “is it done yet?” about 10 seconds after he’d pierced me. I didn’t shed a single tear, but when I saw my face without the stud on Saturday morning, I bawled like a baby. As lame as it sounds, piercing my nose last year was a shallow attempt to turn back time, alter my appearance, and show everyone how resilient I was. Before you spit your tea out laughing at that, allow me to elaborate.

Last year, like lots of people in their mid-twenties, I felt a bit…overwhelmed. I’d submitted my final university assignment, which meant I’d have to begin searching for a full-time, (frighteningly adult) job. Romantically, I’d managed to convince myself I was unworthy of anyone’s time, and to top it all off; I was haunted by the memories of my wasted teenage years. Basically, I panicked and decided a nose piercing would simultaneously address all of these issues. With intellect like that, it’s amazing I ever managed to get a degree.

ANYWAY – I felt the same sense of panic when the stud fell out.You see, that bit of titanium and I  have been on so many adventures together. We’ve surfed in the Portuguese sea, camped together at Bestival, been to see Fleetwood Mac, and generally sassed around for the last 365 days. After a lot of panicking, staring in the mirror, and crying to my Mum (who was dumbfounded by my overreaction/immaturity), I secured an appointment at a local(ish) tattoo shop, where the wonderful resident tattooist had to re-pierce my nose, and embellish me with a shiny new stud. I left her studio feeling whole again, and with an aggressively red left nostril.

I suppose I should try to carve out some kind of moral from this story, because I’ve been a self indulgent, hyper-privileged baby for the last 600 words. Whether you’re studded or not, you’re still the same person; but if a piercing makes you feel better about yourself, don’t let it turn to scar tissue. Also, don’t wash your face so violently in future. You could’ve saved yourself a tenner!

(Only song I can think of with the word ‘pierce’ in it #relevant)

10 Things I Learned At Surf Camp

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I’ve missed blogging for the last two weeks because I’ve been on holiday in beautiful Cascais, Portugal, learning how to surf. I’ve spent most of the week lamenting the lack of sunshine/surfing/serotonin back in England, but I’ve tried to make the most of my melancholy by putting together a handy list of the things I learned during my week at surf camp.

FYI: If you ever decide to try surfing, PLEASE go to Cascais Surf School and stay at the Nice Way Hostel – the people are perfect and it was the sweetest seven days of surfing and sunshine I’ve ever had.

1. Respect the sea – because it won’t respect you when you’re trying to walk against the current, or angle your surf board incorrectly whilst trying to catch a wave. The sea doesn’t dick about, so don’t dick about in the sea. You’ve been warned…

2. Surfing is really bloody difficult – I knew it wasn’t going to be easy, but I hugely underestimated the skill and strength required to balance on a surf board. When I finally managed to stand up during my third lesson, I nearly drowned in my own pride and disbelief.

3. I’m not as physically fit as I  first thought – The ‘8 minute abs’ workout video on YouTube gave me fab abs, but unsurprisingly, it didn’t improve my cardiovascular capacity, or upper arm strength…turns out they’re really important!

4. Surfers are a superior breed of human – they’re super fit, super friendly, and super happy. Why isn’t everyone a surfer?

5. The taste of sea water can linger in the back of your throat for up to 3 days – (self explanatory)

6. Wear Factor 50 sun cream, NOT Factor 15 – If you want everyone to gasp in horror at the state of your blistered, bright red feet all week; wear Factor 15. Alternatively,  if you’d like to achieve a safe, even, subtle tan; whack on the Factor 50.

7. Surfing on a hangover is harder than surfing sober – Whilst I don’t regret showcasing my dancing skills to the group on Thursday night at Flamingo Club, I do regret being unable to do anything remotely productive in the sea the following day.

8. Orange wetsuits are not as flattering as black wetsuits, and they chafe on your neck substantially – Smother your neck in Vaseline to avoid red marks and stand tall to enhance your chances of looking better in orange.

9. LOOK. UP. – As a self-confessed English introvert, I’m accustomed to looking down 99.9% of the time. This bad habit was detrimental to my progress, but when I finally stopped staring at my feet and looking towards the beach, I stood up; it really was that simple. Remember: eyes on the prize.

10. When you realise on the final day that you have to go back to your everyday life in England, and you won’t wake up every day to waves and wonderful people – you will weep like a child, and re-evaluate everything – Then you’ll see photographic proof that you really did ride some waves, it wasn’t all a dream, and will start making plans to go back asap..

So put a wetsuit on, come on, come on…