A bad week (one year on)

 This month, I moved back to uni.

I am glad and happy that I did so and I feel like I can get back to my old life after being sick, but it is still a huge adjustment, especially with the current discourse around students and coronavirus, and whether we should be essentially locked away over Christmas so that we ‘don’t kill nan’.

What makes this discourse difficult is that it does not take into consideration that there are students who, like myself, are more vulnerable to this virus. You have mature students, asthmatic students, people on immunosuppressants for eczema. Indeed, these vulnerable students are likely feeling extremely anxious about being in shared residences away from home as it is, and ‘don’t kill nan’, doesn’t take into consideration ‘don’t kill yourself’.

And then there’s the dismissal of the longer term symptoms. The small number of reinfections that hit worse the second time around, the fact that even ‘healthy’ people are ending up on covid wards. As someone who lives with chronic fatigue, it is not a nice state of being. I now own a shower stool, my favourite possession, because I could not stand up in the shower due to my fatigue. The fact that I, a 21 year old, loves a shower stool more than my laptop, educational books or video games, says something about fatigue. It isn’t being cosy in bed for a couple of weeks, it is sometimes not being able to move your limbs because they feel so heavy. I’ve even ended up with ulcers on my legs due to the time I have spent in bed, and at it’s worst, I managed 20% attendance at school.

Say goodbye to being able to wake up in the morning, goodbye to long walks, goodbye to feeling relatively human. Say hello to falling asleep in the middle of the street, sitting down on the floor when you’re out shopping, and the brain fog that makes you worry about losing your memory and intelligence.

In the midst of all of this moving in malarky, my feeding tube flipped into my stomach, for the first time. I began throwing up my feed, and I had to go into hospital to have the tube replaced in what remains to be a traumatic procedure for me because I panic, and I cry, and I don’t *wan’t* somebody to shove a tube up my nose and into my intestines.

What has happened since is a mixture of feeling lost, academically, routinely and personally. My alarm clock is my mam, who reminds me to put on my feed and take my medicines, flush with water. I am lost without her by my side to remind me to look after myself, and there’s been days where I’ve just forgotten to put on my feed, because ten minutes to set up a feed, crush up and do my medicines is just too much time in my day when I could be trying to finish reading that chapter that I need to read for that assignment that’s coming up soon.

I am adjusting to a brand new way of learning- which I find both frustrating, and great. My school previously refused to record lectures in person for varying reasons: copyright, the comfort of the lecturer, people would skive, etc, etc. now, they have no choice, and if I do have a bad fatigue day and miss my 9am lecture, I’ll be able to watch it back and hear word for word what the lecturer said. However, my peers had the benefit of getting some experience with the system before lockdown- I spent my lockdown malnourished and sleeping 20 hours a day. As well as this, I am thrust back into the stress of third year law when the last time I was fully engaged with my studies was late 2018, before my crohn’s diagnosis. Effectively: its been two years since I was academically able, and at that point I was just starting my second year of law, being taught in person, with a lot less expected of me.

And its not to say I haven’t been doing the right things: I’ve emailed my lecturers, I’ve contacted academic skills, I’m in contact with disability- it’s all there. But I’ve come back to a dilapidated campus; you book your access to the library, and the only reason I’ve stepped foot In the law building was to pick up a pair of free facemasks. I have no routine, no pattern to base things on: I get up five minutes before lectures and can attend in my pyjamas, I shut the laptop screen and have a nap, before ‘going to the library’ online to read articles that I struggle to read off of a screen.

And let’s not get started on the sudden realisation that I would make a *cracking* doctor and want to do medicine, despite basing all of my subjects on law throughout school, even leaving without a maths qualification.

I guess what I’m trying to get at, in short, is that everything is a bit of a struggle right now. I’m busy- doing two jobs I love and doing my degree as well, but I also deeply miss the way life was.

Today it is a year since I went into hospital for seven weeks. The person I was has resurfaced, changed, and grown, but I would do anything to have not had that experience. Would I change it? Absolutely. Would I munch down a plate of food? Well, I already try. And then I’m sick. Or I’m bloated. Or I’m in pain. Or, or, or. There’s no sign of this ever going away anytime soon, and while I am feeling so rotten, friends and people I look up to seem to be getting better. Niviah, an American teen who I came across on tiktok, has now been able to come off of her tube feeds for the first time in years, and she’s back to enjoying food and thriving. Me? I eat for the sake of eating and then life is hell.

There is something in having someone there to care for you, and it is so difficult for me to do this for myself. And yes, it’s strange to say it because I’m young, with a fairly decent career ahead of me if I keep going, and nobody expects professionals to be cared for. But I miss my family, and I’m struggling. And I need a routine.

It is in these moments that I have to remind myself that we push ourselves through the darkest days. I’ve done it since I was a depressed teenager, hoping that I wouldn’t wake up the next day. I pulled myself through seven weeks of hospital treatment that frankly, I am still trying to get over. In the space of a few months I received two life changing diagnosis. I replaced countless feeding tubes over lockdown only to throw them up within days. Things have sucked, massively.

Indeed, regardless of health- we do this in all walks of life. I read that chapter to get that degree that gives me the satisfaction of knowing I am capable of a big shiny career. You put yourself through childbirth to bring a new human into the world. That late night in the office? Satisfaction from finishing a big job. You wear that face mask to protect loved ones.

This week has been a horrible week. But next week will come. I find it so strange that this anniversary has affected me so much. I didn’t count down the days until the anniversary of the colonoscopy that showed I had ulceration in my colon, or the day I first went into hospital for steroids. I think it was because as life changing as they were, nothing compares to going into the hospital for a weekend and then leaving nearly two months later, attached to a feeding tube and forced to drop out of uni, then to go home to a global pandemic. I have not had a normal year- I wanted to volunteer, to do my part time job at the supermarket I’ve worked at since I was 16, to take myself to my favourite cinema on the planet and meet with my friends. Instead, I had to stay 2m away from my family at all times, rarely stepped out of the house, and struggled to read a single page of a book. Maybe this week will always be a bad week. A lot has happened in a year, and this date marks the horrible-ness beginning. 

These are dark days indeed, but we have to draw on that strength inside us, that strength we don’t even know is there until we're out of the tunnel.

When I write it out, I am extremely proud of my resilience. But today? I feel bad for not finishing that chapter. It’s really important.