Reality Check

I have to go stay with my parents for 2 weeks because there’ll be no one here to look after me while my husband is away with work. The last time I stayed there, I ended up on a 24 hour hospital admission because I got an infection and needed IV steroids and antibiotics for my adrenal insufficiency. I’m usually a super organised person anyway and have a gazillion back up plans for most eventualities, but I thought I’d send my parents an email with a refresher on where to find things like my emergency injection, my info pack for when no one knows how to treat me if I’m unconscious, and what to say to an ambulance dispatch.

And then it kind of hit me how crazy it all is. I’m pretty used to dealing with it because it’s my every day life. But I kind of forget how odd it is for the average human being to think about, considering it’s a lot of ‘death’ talk. I was saying things like:

– if unconscious I need X and you might have to argue for it

– the ambulance need to put it on the same call out speed as a heart attack

– if doctors don’t know what to do, it’s in the info pack

Arguing for meds? Doctors not knowing what to do? Those kind of things shouldn’t even come into it. Most people have an emergency and they get the luxury of being able to concentrate fully on not dying, but I have to prep people looking after me with how to best argue with the keepers of the drugs and supposed medical expertise to make sure they don’t kill me through ignorance/lack of knowledge/arrogance.

And the thing is, this isn’t me on some kind of Doomsday Prepper escapade, running drills as to who can draw up and administer my injection the fastest. It’s not a hypothetical scenario. This is based on experiences I’ve had where I’ve needed to argue, where the ambulance has triaged me wrong and where doctors don’t actually know what to do so I’ve had to sort it out. All while trying to keep alive.

I tend to say ‘it’s fine though because I’ve always been able to sort myself out’ to try to reassure people, because it tends to freak people out. It still freaks my husband out, and he’s done it with me a lot of times, but he’s still not used to it really. Which puts a lot of pressure on me to a) keep conscious and calm b) keep on top of what the doctors are doing. I had to learn pretty quickly to keep calm and detach myself from it all, otherwise things would not end well.

I’m not a superhuman though. I might seem like I’m fine when I’m sitting up and talking with a cortisol level which says I should be in a coma, but there is going to be a time when I won’t be conscious and I’ll have to rely on other people. Like a car accident. Or a stomach bug. So it’s good to have plans in place to make it as unstressful as possible on other people.

But it’s still weird, right? There’s a pretty long list of things that might kill me every day, which are surprisingly mundane in terms of life events, and then there’s my plans to help prevent that. I decided a while ago that I wasn’t going to worry about all these little things because it just wastes cortisol I don’t have (and could therefore accelerate any potential death outcome, the irony) but also because everyone has to die at some point! The advantage I do have over other people is that I *do* have plans in place for those life things which other people might not have thought of. Eg car accidents. Severe illness from something ‘normal’ like flu. I also have the advantage of knowing how our healthcare system works so know how to and when to seek help. I have access to a lot of varied (prescribed) drugs and how I can best use them. I know how to read between the lines of doctor speak and know when they’re lying through their teeth or when they know what they’re on about. I can advocate for myself. I’ve got more practical, first hand knowledge in medical emergencies than a lot of junior doctors do. In summary, if there’s ever a zombie apocalypse, you want me in your underground shelter!

So while giving my parents instructions as to how to stop me from dying on their watch was a bit of a reality check for me in terms of how desensitised I’ve got to it all, it also was a reminder about how I do a pretty good job of keeping myself alive despite the complexities of my illness.

*touch wood* 😉

‘And that’s ok’

One of the things that many of us with long term chronic illnesses struggle with is you don’t get a break. Particularly if you have a complex illness which needs constant managing, you can’t just take your medications in the morning and get on with life. Your time is consumed with keeping an eye on your illness all day every day. It’s a bit like having a small child.

Also a bit like being a parent, there are many people who seem to think they know how to do things better than the way you’re doing it and offer unsolicited advice. Add that to everything you ‘should’ be doing as instructed by your doctors along with the expectations you set yourself, it can feel pretty overwhelming. But being as healthy as you can within your limits isn’t easy and sometimes no matter what you do or how you manage it, you either get it wrong or something throws you a curveball.

And that’s ok.

This is my new mantra I’ve been trying to adopt. There’s a huge difference between rationally knowing something and your body knowing something. Rationally, I’ve been able to tell you for months/years why it’s ok if things go wrong, but actually feeling and knowing that in my body is relatively new. I started trying to do this over a year ago in the summer when I was in and out of hospital all the time and feeling like an absolute failure because of it. But then I realised as I had yet another group of consultants and their regs (what seemed a bit too cheerfully!) debating all of the rare conditions I could potentially have which could kill me, that even the ‘experts’ didn’t have a clue what was going on either. And we largely still don’t!

And that’s ok.

Since I’ve been reinforcing this to myself, things have got a bit easier, mentally at the very least. But also from a managing my day to day symptoms point of view, it’s a lot easier to try something new or push my limits a bit when I don’t have the black cloud of ‘you’re an idiot if you get it wrong’ hanging over my head.

Sometimes I need to go to hospital and get IVs. Doesn’t always matter what happened for me to need them, sometimes I just need them. And that’s ok.

I track my weight every day, which might seem a bit extreme. But no one would believe me when I said it goes up and down depending on how much my body struggles rather than what I’m eating (or not eating). Sometimes I can put on 2kg overnight. And that’s ok.

Sometimes I need to increase my steroids or updose and I might not know why straight away, but my gut instinct is actually pretty good. And that’s ok.

It’s 4am and I’m writing a blog post because I can’t sleep and I’ve been awake since 2.30am. Before, I’d have stressed out about not being asleep but if I need to rest or sleep during the day tomorrow, I’ll do that. And that’s ok.

Sometimes I need to eat random things all day, other days I eat very little. Im trying to practise eating intuitively. And that’s ok.

There are lots of other things but you get the idea. When I catch myself starting to get into a cycle of ‘yeah but if I do this then that might happen’ or ‘if I need to eat more carbs then I’ll put more weight on’, I stop myself and say ‘and that’s ok’. It’s taken a long time, but I’m starting to feel like it’s working.

Willpower or self discipline isn’t a problem for me. If anything, I’m too strict on myself. So I’m pretty proud of the fact that I’m starting to see that it’s ok to get it wrong. Being ill isn’t my fault, there’s only so much control I have over how my health is and I’m doing all I can, and sometimes things happen for no reason at all.

And that’s ok.