On caring for yourself

I haven’t blogged in a while. I’m on a high dose of steroids which doesn’t make it easy to put sentences together.

I finally relented and accepted that my flare-up was not going away by itself. I deprioritised my work, if you will, and I can’t remember the specifics, but ended up taking oral steroids again. They did not work after a week so I was admitted to hospital for IV steroids and supposedly emergency surgery. It was a hellish week, the NHS is straining at the seams. I spent two days on a trolley in A&E waiting for a bed then was shuffled from bed to bed on different wards. Unable to sleep, toilets covered in faeces. On the Thursday the registrar came round and told me there was a slot for surgery for me the next morning, if I wanted it, which I did. I spoke to the surgeon who was very calm and reassuring, a specialist gastro surgeon, so the right person for the job. (As opposed to emergency surgery which would have been any general surgeon).
Much to my devastation the surgery was cancelled, which was to be fair, very mentally draining. They had a surgeon and a theatre, but no available anaesthetist or surgical team. I was discharged as my condition was stable and assured I would get surgery within 2 weeks It’s now scheduled for 13th April. I cannot wait to get it over with. I have gone from being terrified to overly eager. I know it’ll be tough but they’ve talked me through it about a million times and the recovery process. The thought of a general anaesthetic scares me due to a total lack of control. I don’t like not being in control.

I’ll be having a sub-total colectomy which will mean I’ll have a stoma and ileostomy bag. I have a feeling I’ll cope well with this, body image wise. Maybe not. Maybe I’ll have a breakdown and hate myself.

Which brings me to caring for myself. I’ve had so many tests and scans this week, trying to make sure I’m healthy and ready for surgery. I’m not drinking alcohol or smoking. Which is a fairly new concept to me. I know I’ve cared for myself by trying to treat it with medications, in a way. And taken them properly over the years. But my depression and general lack of actual caring about myself or what happens to me, kind of conflicts with all this preparation.

I’ve come to a few realisations about various friends through this process. And also felt very alone. There is nothing quite like lying in a hospital bed awaiting surgery and realising that there is actually no-one who can be there for when you wake up to realise that you need to try and sort your life out.

My parents are coming to the UK now this week, and my mum will be there for my surgery date and afterwards.

I also need to speak with her (and my dad) about being trans and my general feelings about that, which again consist of eagerness about having top surgery and starting testosterone. I’ve got a mental health assessment in May. The whole concept of real life experience is fundamentally flawed, but I am doing it and will be doing it. Although, as a non-binary identifying person who just wants top surgery and testosterone, I say it’s flawed because you have this uncomfortable period of looking female and living as male. So going in male toilets, changing rooms, when you do not remotely pass is exhausting and terrifying. Because of every time you get a funny look, or have to argue your case, for being there where you want to be. I understand it is their way of making sure you are absolutely certain it is right for you. But nonetheless, it sucks.

And right now, I am just a medical entity, being poked and prodded. As far as the NHS is concerned, a female medical entity. Although I have told pretty much every doctor I’ve dealt with, usually because it comes up, with no issue. But as I haven’t officially changed my name and gender yet I am here, where I am.

Trying to care for myself. Probably doing a pretty good job, all things considered.

4 thoughts on “On caring for yourself

  1. I’d hug you if I could, sounds like you’ve been through a lot! As you know I’ve been following it on Twitter too so it was enlightening to read it here and get a full picture all at once.

    Hang in there!

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