Another Orbit

Happy birthday to me! If you follow me on Instagram (or Twitter), you’ll have seen that I’m currently in hospital. What a way to spend your 21st birthday, eh? Shackled to an IV pole in the hospital.

My Crohn’s has finally pummelled me down into “dangerously malnourished” territory. After being left flailing in the dark by my local hospital, I’ve been swept up into the benevolent arms of St. Thomas’ in London. The eventual plan is a Michelassi strictureplasty to cover the long area of stricturing at the end of my ileum. I’ll have a temporary ileostomy while that heals, and then we can reconnect everything up and start talking drugs again. But before we can even consider that, I need to put on weight. Like… a lot of it. At least 10 kg, but 15 would be better, and more wouldn’t hurt, in the face of surgery. Even though I’m still eating like an absolute fiend (or not, but I’m doing impressively for someone whose intestines are so wrecked), the weight keeps dropping off. That’s why it’s a bag full of the nutrients straight to the heart for me! Every night, until I’ve got enough cushioning that surgery is safe.

So that’s how I wound up here – spending my birthday in the hospital. Truthfully, I don’t really mind. I’m a little bit embarrassed that all the nurses are expressing sympathy about it, when the only thing I’m doing is… erm, sitting around on TPN, and maybe nipping downstairs to cheekily buy myself a sandwich once my infusion finishes. Honestly, I’m content to celebrate once I get out of here. Even though I never really celebrate my birthdays anyway. I don’t even remember how I spent last year’s, so it can’t have been eventful!

But the last year has been a bit tumultuous, to say the least. I didn’t manage to blog all of it (thanks, depression!) and I’m kicking myself for it now. So why not take some time to do it today? On the anniversary of another rotation around the sun, let’s look back at what the last 365 days were like for me:

AUGUST

I legitimately don’t remember any of last August. I remember it being slightly less blisteringly hot than July, which is good, because that means I probably spent it in a really banal fashion: playing video games. I would much rather have a winter birthday, I think. I do not do well in the heat at all. Maybe it’s time to up and move to the southern hemisphere…?

SEPTEMBER

University started again! And, as ever, I was bright-eyed, bushy-tailed, and ready to tackle second year with everything I had (which wasn’t that much even back then, bless me). I loved my tiny studio flat and was so grateful to have a space to call my own, somewhere I could retreat to. Things seemed to be looking up. Even if my gastroenterologist had told me that he was going on paternity leave for a year and shuffling me off to someone else… right when I needed confirmation that I wasn’t responding to Humira.

OCTOBER

I try to push all things medical out of my mind and throw myself into university. Managing a society with other committee members, spending time with friends, hauling myself out of my room to attend my first ever concert in the city: Kero Kero Bonito! I had a brilliant time, got heartache from the bass pounding, had beer spilled down the back of my neck and sung myself hoarse. All on my own. Independence really is something. And I was still in bed with a sandwich by midnight. Also, I somehow manage to (successfully) apply for a job and a volunteer position during this time. I was really hustling in October.

NOVEMBER

The days are shortening and I’m starting to lose hope medically. Nobody’s taking responsibility for me and I am starting to reach the end of my tether… when I get a letter from my new gastroenterologist, telling me that I don’t respond to Humira and so he’s switching me to infliximab as soon as possible. I am buoyed by this. The holiday cheer is upon me. I have found hope again, the world feels all the sweeter for it, and I am reinvigorated.

DECEMBER

The holiday cheer is upon is! I love December, always, and this year is no different. I start infliximab on the 5th of December, having my loading doses in the weeks running up to Christmas – one of them on Christmas Eve – and the tinsel and tunes in the infusion unit serve to bolster my hope. Here’s to 2019, I think. This is going to be my year.

JANUARY

Exams are here and I’m kind of freaking out. Second year is way more intense than first year and I’m feeling the strain. I’ve been studying like I always have, but for a month I’m dogged by the feeling that it just isn’t enough. So I do what I always do: shut myself in my room and study as hard as possible until exams are over. I emerge intact, but exhausted.

FEBRUARY

Second semester is here but I’m not feeling it. Infliximab doesn’t seem to be having any effect yet, the days are cold and dark, more often than not I’m shackled to my bedroom thanks to diarrhoea or exhaustion. Studying is becoming harder. I love the material, but what’s the point? Some days I don’t even want to get out of bed. I start crying a lot, and thinking about withdrawing from university. I don’t want to carry on feeling like this, but at the same time… I’m hesitant to rip away the only thing giving me any sense of self-worth. But, amidst all this, I do manage to apply for a summer internship for students with disabilities and long-term health conditions.

MARCH

Things get worse. I start thinking about death a lot, but idly, almost offhand. The crying gets less, but the apathy – what I’ve affectionately termed The Grey Haze – returns. I vow to do something.

And then something changes. I don’t know what. A daffodil blooms outside my window. I feel the heat of the sun’s rays for the first time in months. I wake up in time for the dawn chorus. I think, actually, maybe life is worth hanging around for. And so, I grit my teeth and force myself out of bed every morning.

APRIL

Things are still as bad as they always were, but now I have assignments to complete, so at least the days are passing quickly. I complain about the work often and loudly but in truth I’m having a whale of a time. I discover Killing Eve and fall wildly in love.

MAY

Exam season is here. I shut myself in my room again, but more intensely this time, studying for 12 hours a day and emerging only to eat and rant about various viruses and bacteria. This is mentally and physically gruelling. I am counting the days until I am free.

Remember that internship scheme? I fought off a lot of competition and secured a place. Now I’m just waiting to here where it will be.

JUNE

I emerge triumphant. Take that, second year! I get a couple of weeks of rest and relaxation before starting my internship. It’s long and hard but I love the work and the company, and I feel so at home there. I wake at 5am. I get home from work at 6.30pm. I sleep at 9pm (just to get enough hours in before I have to wake at 5 again!). The days start to run into each other like ink blurring on wet paper, but I am having too much fun to stop now.

JULY

My internship continues and the days spin by like I’m running on a hamster wheel. Nothing can stop me. I am doing better than ever, eating and sleeping consistently, and maybe if it wasn’t so bloody hot my life would be perfect and –

– it’s like I tripped on an invisible crack in the paving. Everything comes tumbling down around me. I can no longer eat. Food tastes wrong. I am constantly nauseous, constantly in tooth-grinding pain. I can’t sleep. I start getting backache from the strain I am holding myself under every day. The weakness starts to set in.

I take a deep breath, and I email my doctor.

AUGUST

And so here we are. I’ve been in the hospital since the start of the month, and in that time I’ve:

• conquered my fear of Fragmin injections

• had a PICC line placed

• had a flexible sigmoidoscopy

• started TPN

• had an infection scare (false alarm, thankfully!)

• restarted TPN.

Now I’m in the middle of training to self-administer the PN at home. On Thursday I’m having my PICC replaced with a Hickman. Then, all that’s left for me to do is complete training, and I can go home and start resting up for surgery.

I’m excited to start on this journey, one that will hopefully see me on my way back to health. It sounds a complete cliché, but it’s been so many years that I genuinely don’t remember what good health feels like. Strength, stamina, energy of any kind – it seems like a dream. It feels like I was blundering around in the fog before, whereas now there’s a path I can follow towards the good health and happiness I’m looking for. Okay, 2019 looks like it’s not going to be my year, or at least not the first 2/3. Maybe 2019-20 is where things start to turn around for me!

But it isn’t all sunshine and positivity. After discussion with my surgeon, I decided that I need to temporarily withdraw from university on medical grounds. I’ll be on PN for a few months at the very least, then the main surgery, then recovery from that, then the reconnection, then recovery from that. I can’t concentrate on recovery if I have my final year of university looming. I need to be able to commit to my dissertation fully. I won’t be able to do that if I’m scrambling to complete it from a hospital bed. So the wisest thing to do is take a period of temporary intermission, and return for my final year after twelve months.

This is gut-wrenching. Academia is the leg that has propped me up when everything else I had had been wrenched away from me. I don’t know what I’m going to do in the year to come, but I have to do something. I need to make sure I don’t fall into the depressive spiral that creeps in when I lose my routine. Since I am nothing if not predictable, I’ve started making a list:

• start vlogging, finally! Especially now that I’m on PN, which is woefully under-represented in social media.
• Blog more regularly. Not only is writing so cathartic for me, but it’s only lately that I’ve started to realise that my words have value. I’m not just spitting nothingness into the ether – and if I can help even one person feel a little less alone, I’ll be well satisfied.
• Find my love of food again. I can still eat, thankfully, as ineffective as it is after it passes my oesophagus. But in the last few years food has started to frighten me. My safe foods list constricted further and further in the wake of my worsening symptoms. I need to coax my creativity back into the kitchen, and come up with food that I can tolerate and actually want to eat. Now there’s a challenge.
• Volunteer if at all possible. I know! I know. I’m supposed to be resting. But I have to be doing something useful. I’m thinking of seeing if there are any ostomy or PN support groups in my local area (preliminary research suggests not, since I live in a semi-rural area and don’t drive) and offering any help. Failing that, there’s got to be something in my village I can help with!

What else should I do during my year of rest and recovery? Have you ever had to do anything similar? Let me know! I’m still brainstorming.

 

Header photo by Gaelle Marcel on Unsplash.

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