Running on autopilot

 I wrote this at 11pm on the 22nd of April, hoping to post it here. Unfortunately, three and a bit months later there’s been little change. I would describe it as running on autopilot- unless I’ve seen or video called friends, I haven’t spoken to anyone. I haven’t done any extra work or preparation for fourth year, I haven’t read or replied to important emails, and I’ve missed opportunities. My focus has been on staying alive, trying to stay sane and hydrated, and on keeping myself out of hospital for as long as I could.

So naturally… I’ve been in hospital just shy of two weeks again, after multiple failed replacements of my NJ tube. It’s another case of “it was supposed to be an overnight thing but here we are…” except this time I’m on my own, and trying to make three t-shirts last the never ending stay. I’m struggling to tolerate my usual feed at my normal rate, and trying to navigate the waters of being “refed” since I lost my NJ a month ago. That’s not to mention my crohn’s may be flaring again. What should have been a quick in and out is now “let’s wait for your bloods to improve”, or “you need adequate nutrition”, “let’s keep an eye on it”. Admittedly, this is nowhere near where I wanted to be at the moment: hospitals are terrifying, and busy, with covid, staff shortages and almost uncontrollable admissions as we try to get back on top of chronic illness, years worth of delayed surgery and staff burnout. 

For me, after spending a year and a half safely in the comfort of my home, coming into contact with so many people who could pass on covid to me while I’m in an extra vulnerable, malnourished state is nothing short of a nightmare. Oh to have been on night feeds and planning to return to a part time job. Unfortunately that plan ended abruptly after my NJ flipped into my stomach, which is a sensation I’ve gotten used to after four attempts at replacing it this week. Now we have to undo the damage a month of poor NG feeding has done.

Onto the post then. A reminder that this was written a few months ago and that I haven’t actually changed anything, so it’s quite ironic. The anxiety didn’t end and is actually increasing with the prospect of new covid variants, it feels like the concerns of many vulnerable people are being ignored and the world is a darker place for us again, although to be fair my grades didn’t suddenly drop - but the health thing? that was definitely too good to be true. 

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I feel as though I’ve had nothing to say, for a long time. I’m four months deep into a period of isolating myself and burning my relationships, social skills out the window. Focusing on keeping my head down, yet afloat, monitoring my ever fragile health, and the stresses of home life during a global pandemic, I haven’t had the time to write, or speak to friends, or put effort into projects. I have escaped back into fantasy worlds, as the Dragonborn or as Link, Mario, Spyro. Anyone who could remove me from this realm, and reintroduce me to theirs.

I am doing surprisingly really well at university. Exceptionally, compared to the time before my leave. I will probably never forget the hollowness I felt a few weeks before I decided to take time out. A cold autumn night, at this point I was already losing weight unsustainably, not really understanding why I was feeling so unwell. I had been elected disability representative, and I had purpose, but I had also just gotten back a piece of work graded at a C. Although it didn’t count towards my grade, it was honours level, and I felt like a failure. I sat on the bench outside the library with my then-boyfriend, and I was upset. I can’t remember if I cried or if I just wanted to cry, as I spoke about my fears for my future; that I would be too unwell to work, that my degree would be useless, that I wouldn’t even be able to get to traineeship level because legal careers are not designed for disabled people.

 It’s a horrible memory, one of my lowest points, and it’s no surprise that I was feeling that way with how unwell I was. I have come leaps and bounds from that night on the bench, and indeed, I am probably a much different person. My grades are up, my CV is boosted. I’m kept alive by the tube on my face. I have lived through a year of back to back hospital stays, followed by a year of a global pandemic. I have been terrified of having my symptoms triggered by a virus my dampened immune system wouldn’t be able to fight at best, and at worst, the overwhelming fear of dying, or losing my loved ones, being told I wasn’t worth a ventilator, being left behind. 

It’s why I want to talk about the light at the end of the tunnel. I have my exams over the next couple of weeks: which ends this hellish semester and leads to the summer before my final year. A year “late”, but we’ve nearly made it, at least. I am due my permanent feeding tube surgery during the summer too- marking the end of the sore throats and days I can’t speak, the pressure ulcers in my nose and on my cheek. I’ve just had my second dose of the vaccine, not an end to the pandemic, but an end to the anxiety that has confined me to my home, scared to breathe the air outside. And perhaps the biggest light: a pause in the nearly full day feeding routine. I am able to tolerate small bites of food, sometimes. There’s no pattern to when I can and when I cannot eat without being unwell. And even when I am not unwell, I am still wiped out for hours after, curled in a ball, waiting for the pain and waves of nausea to subside. A few chips off a plate. Chicken nuggets. A glass of water. Half a fishcake. An unbelievable, and hopeful, emotional moment. I now get to run my feed just shy of 12 hours a day, meaning if I time it right, overnight. We can’t say how long it will last, if it will improve further, and we still don’t think it will result in being able to sit down for Christmas dinner without symptoms. I have always loved food, and it is my biggest wish that I get to eat normally again. It is a big event, having something small to nibble on. I have to ensure I have no important tasks to do that day, ready my sickbags nearby, and time my medicines right. Sometimes it pays off, and a few hours in bed is a worthy trade for a little bit of normal, a taste. Sometimes it isn’t wise, and I find myself suffering for daring to try. 

What I really miss is certainty: knowing that I could eat without thinking about it. Now, so much time is spent weighing up my risks, working out if the food is going to be okay with the crohns (restrictive) and the gastroparesis (even more restrictive). It is a hassle. But I am so glad to be, even if it is just for the moment, on nighttime feeds. For over a year, I have had to carry my feeding equipment with me for most of the day, between 17 and 20 hours. The equipment is heavy and cumbersome, I knock things down as I go past. My tubes can get caught or pulled on. My shoulders struggle, or even dislocate, with the weight. for now, I can put my feed on my wee drip stand as I go to sleep, and then disconnect when I wake up. I do not have to worry about how to manoeuvre in the shower, or to stop my feed half way through to take my medicine. It is so much less of a chore to do normal tasks, and I am so grateful. I can only hope that it stays this way. 

After so long with no good news, and constant setbacks, I have been hit with a wave of hope. I want to be optimistic, but I can’t help feeling like things are too good to be true. That for feeling this good, there’ll be a sacrifice. Maybe a fall in my grades: a wasted degree. Maybe i’ll catch covid despite the vaccine. Maybe the hospital won’t be able to do my surgery, or that when I get it there’ll be awful complications and I’ll be stuck in hospital for weeks, months. 

It is so hard to be optimistic and see a light at the end of the tunnel when things have been so dark and bleak recently. How do I start meeting my pals again? what do we have to talk about? Do I have a personality after effectively being isolated since October 2019? 

Over a year of my life has been wasted: my good years. When I first went into hospital with my crohn’s I was 19. Now i’m 22. A scary amount of time has passed and I haven’t been in touch with many people during it. I am bad for being nostalgic, looking too far into the past. But I am so devastated at the recent time I lost. My university experience is shrouded in my illness, and now in a global pandemic. From the looks of things, I’ll be graduating into a recession. 

But despite it all, I grow. And I am, despite it all, so grateful for life.