Balancing Three Jobs with a Bowel Disease

 

When people ask me what Crohn’s is, I usually just tell them, ‘ermmmm it’s a bit embarrassing it basically gives you diarrhoea’, which is really stupid of me because then people think that shitting all of the time is the only problem I have. For example, I told some arsehole boy I went on a few dates with I had Crohn’s because we were going for drinks and I can’t drink caffeine or fizzy drinks and I also don’t smoke, and he was like, ‘yeah I get why you can’t smoke or drink coffee cos they make you like instantly need a shit’, but actually I don’t drink caffeine because I get acid reflux and it gives me chest pain until I puke – and I’m pretty sure we’re not supposed to smoke because we have an increased risk of bowel cancer. Anyway he also told me after complaining I was too tame on a night out that I need to ‘live a bit more’, which is a joke – he was completely unaware of the extent to which I battle my symptoms both on nights out and within the three jobs I’m working each week.

I think the true reason I avoid mentioning the other symptoms is because I don’t want people to think I’m incapable of anything – like I don’t want people to think I’m less fun because I get tired, or jobs to think I can’t cope.

Most jobs will say they’re disability confident, and I do believe that they are, but I did take a big leap when deciding to get myself three customer facing jobs where you have to be high energy and on your feet all day. Consequently, I’ve only briefly mentioned my Crohn’s to one of my employers (and this was a couple of months in). Deep down I think I am afraid to tell them the way my symptoms and the side effects of my medication truly affect me, i.e. extreme tiredness and susceptibility to illness. I know all of my employers are excellent and would be understanding, but a little part of me thinks they might think I’m an idiot for choosing these jobs. Basically I work at Madame Tussauds as an Actor, in crowded rooms where thousands of people walk past me each day and you have to be constantly full of energy, in a busy pub where there’s no time to stop and rest, and as a children’s party entertainer full of germy kids. Having three jobs means there’s little time for relaxing, but despite it being challenging, I like to push myself and know I am capable of working these jobs just as well as everyone else.

Balancing Symptoms with Work

Like most illnesses, some days my symptoms are worse than others and fortunately for me, my medication works amazingly and most of the time I feel completely healthy, but I don’t want to disregard the struggles which feel smaller to me – the ones I face every day and have consequently found methods of coping with.

This may seem silly but I mentioned that I don’t drink caffeine earlier, and once someone asked me, ‘if you can’t drink coffee, what do you do when you get tired?’. I replied something like, ‘I just get on with it’, but I did think to myself, hang on a minute, I have extreme tiredness; I don’t just get on with it, I power through all of the time. Since my last blog I’ve started having vitamin B12 injections every three months and oh my God that stuff is amazing I feel like a new woman after I have it, would highly recommend the B12. But I’ll be honest I do still get tired at work. I’m not shy to have a little nap in public – they have sofas in the canteen at Madame Tussauds and I have slept on them many a time during my breaks, and not that I think anyone would, but If I was to hear that anyone was laughing about me behind my back then I would just tell them that I have Crohn’s and I suspect they would feel guilty for it. I’ll also take a cheeky sleep on the train and tubes on my way there and back and if I’m being honest, as soon as I’ve sat down, I really struggle to keep my eyes open.

On the topic of trains, in rush hour at my station you’ll be very unlikely to get a seat and when I first started commuting to London, I really struggled with the standing still and squished for half an hour. This is not something I expected to struggle with, especially considering how much healthier I and fitter I am compared to when I was first diagnosed. I’m not sure if I was just panicking, but I found myself overheating and would take my coat and jumper off and be stood there in a t-shirt, whilst everyone around me remained in their winter coats. I know it doesn’t help that I don’t eat breakfast before I leave, but I struggle with my appetite and just can’t bring myself to eat until I’ve been up and about for a couple of hours.  I know Crohn’s does count as a disability so I probably could ask for a seat if I needed to, but I would feel really cheeky doing it as I’m young and probably look healthier than a lot of other people stood up, also I wouldn’t because I blame myself for not eating breakfast. I did ask for someone’s seat one time when I started feeling dizzy and another time I just sat on the floor and someone offered me their seat. I’ve been finding trains a lot easier recently though and have become used to standing still for long periods of time.

Despite my appetite being bad in the mornings, I have still been having a large breakfast before work (usually a MacDonald’s breakfast when I get off the train) and my appetite during the day has been a lot better – going to work has really helped me to make myself eat three meals a day and I do get very hungry. Not that my weight has gone up, it’s unfortunately still slowly going down. I have had two dietician appointments since my last blog and she mainly told me to dink more milk, put milk powder in my sauces and eat more snacks. I have been drinking a lot more milk, but the milk powder thing I haven’t tried – I’m sure it’s fine but it sounds kind of gross in my head. Buying snacks is expensiveeeeeee (although I’ve still been buying Maccies cheese bites). I do feel like my food intake has increased a lot and I always eat until I’m full up so it’s unfortunate my weight is still decreasing – I would like to fatten my boobs up – I don’t feel like my dietician has told me anything that I didn’t already know before so my weight does feel out of my control at the moment. I try not to worry or stress about it.

Since there’s not much meat on my bones, I’m also lacking a lot of muscle, particularly in my arms. For Madame Tussauds we are supposed to be EVAC chair trained which is a chair that can take wheelchair users down the stairs in the event of the fire. Unfortunately, during the training I was not strong enough to lift the chair and nearly dropped the girls I was practicing on a couple times, so they said for my own safety it would be best for me to not even take the test. It is still fine for me to work there, I just have to hope that if there is a fire and I am with a wheelchair user then there will be someone else near me who can use it. I was also very nervous for lifting the glass tray when I first started working in the pub, and I told one of the bar staff that I couldn’t lift it and she was just like, ‘yes you can’ and made me do it and now that I’m used to lifting it, it feels effortless. I still can’t change the barrels because I’m nervous I won’t be able to lift them and have always asked someone else to do it for me.

Break times can be a bit of a struggle, I obviously enjoy having a break, but we usually have a maximum of half an hour and I’m quite a slow eater, so this doesn’t give me enough time to both eat and use the loo. I’m not a fan of shitting at work but sometimes it has to be done. I don’t want to be too graphic, but sometimes after I eat a big meal I won’t need to shit, other times I will need to straight away, or maybe about 20 minutes later I will then need to go (usually as my break time is just about to end). This isn’t so much of an issue in the pub as it’s easy to go to the loo whenever you want, but at Madame Tussauds it is slightly more of an issue – if we are acting in the Chamber of Horrors then our breaks are tightly scheduled in and if we are late the whole breaks get thrown off schedule and everyone gets hangry. (Everyone would be understanding if I was late because of my Crohn’s, but I know how hangry I get when I’m waiting myself, therefore if I am able to hold it in to keep breaks on schedule then that is what I will do). We do have a special code we have to radio in for when we need the toilet on shift which is fun.

The reason I struggle with breaks in the pub is because we can order their food really cheaply (which is great for fattening myself up), but I find rich restaurant food harder to eat and it can make me feel nauseous. Sometimes my break just isn’t long enough for me to eat all my food without feeling ill. My appetite improvements however, have allowed me to be able to serve food to customers in the pub without any nausea. The children’s parties are usually only one or two hours long so as long as I don’t eat a load of vegetables beforehand then I should be fine (vegetables seem to be the main food my stomach doesn’t agree with). 

These symptoms all seem so small to me compared to what I have faced when I was first diagnosed and I am extremely lucky that my medication works so well for me and that I am healthy enough and able to work these three amazing jobs. I have been experiencing these symptoms every day for so long I have become used to them – I do think about the many bigger problems in the world then mine when I write these blogs and I question why I’m writing about these symptoms that I am able to cope with, but I think it’s important to recognise the smaller things you have struggled with and feel proud of what you have overcome. Also I think when I was first diagnosed the idea of working three jobs at once just over a year later would’ve seemed crazy to me. Working three jobs takes a lot of planning and organisation and I have just finished a three week run without taking any days off. I haven’t taken much time to relax but I am someone who likes to keep myself busy and am really enjoying myself.

I did my first ever Self-Injection at Work

I get to inject myself with infliximab now instead of having the infusions. I was given the offer to start doing this in the summer and I decided now that I have finished University it would be easier because I won’t have to take any time off work. My infusions used to be every eight weeks and would run for two hours, and I would also have to go in for a blood test a week beforehand, whereas the self-injections are every two weeks and take around thirty seconds. The self-injections had seemed like a much easier option – right until I was due for my first dose and had forgotten to book an appointment to teach me how to use them.

I had a busy week at Madame Tussauds that week because after our shifts, in the evenings we were rehearsing for a charity super hero themed murder mystery night. I knew if I could even get an appointment, I would definitely have to pull out of a work shift last minute. After a bit of a panic, I rang up to book an appointment and they told me If I wanted a virtual appointment then I could get one quicker. I’m alright with needles to be fair, so I wasn’t to fussed about having someone teach me how to jab myself over the internet. They did actually have an appointment within that week, however as I’d suspected it was for a day when I was scheduled in to be scaring people in the Chamber of Horrors. I asked over the phone if I would be able to do it from work and she said no because it takes me an hour and a half to travel there and they recommended me not to because it would be too long to keep it out the fridge for (they need to be stored in the fridge). So I said over the phone, ‘sure that’s fine I’ll just leave work early’, and then I packed up a cool box with ice in it so that I could take my medication on the train.

Doing the jab was fine and the nurse told me that taking it in the cool box was okay. I told my manager I’d have to go up for a virtual appointment to teach me to use my new medication, but didn’t really mention to him I would be sat in the changing rooms with my trousers down, shoving a needle in my leg. Madame Tussauds is the only job I have told I have Crohn’s, mainly because of the toilet radio situation and so they know what I’m doing if I’m missing for a while.

I would recommend self-injections to anyone whose nervous. They basically work like an EpiPen and sting a tiny bit, but only for about ten seconds. It is the same medication as I was on before and I would also like to say that since my last blog my side effects from infliximab have really slowed down – my hair has completely stopped falling out and I have even just dyed it, which I would never have imagined doing four months ago. And finally my gums are barely bleeding anymore, which makes cleaning my teeth a thousand times more pleasant.


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