Since writing my post about needing to use my emergency injection, a few people have messaged me (thanks!) either to keep me entertained or because they’ve been curious about adrenal insufficiency. Something which has come up a lot is the question ‘weren’t you scared?’. I think I’m getting asked this more than usual after a hospital admission because I actually had to use my injection this time.
First of all, feeling like I’m going to pass out and being ill in random places, ambulances, a&e, hospitals etc etc isn’t new. That doesn’t mean I’m cool as a cucumber, but it does mean that while I’m right in the middle of it, I don’t really get properly scared. It’s kind of a ‘here we go again’ eye roll moment. I do cry and go off on a tangent/spiral, but it’s not fear, it’s crazy hormones making me anxious and confused. Don’t get me wrong, Adrenal Crises are scary things. You don’t feel like you’re in control of your body (you’re not), it’s almost like watching a film, but I have low cortisol symptoms all day every day at various points anyway. The indicator it’s a crisis for me is i get all of them at once and a ‘I need hospital’ feeling.
Secondly, it’s actually really bad if I do get scared because it means I’m more likely to die because my body wouldn’t cope with it (not having the stress hormone and all that). So it isn’t in my best interests to be scared!
The main reason I don’t get as scared as people would expect is because I spent a large portion of time walking a fine line between conscious and coma before diagnosis. I just didn’t know it, and neither did the doctors. So my theory is that if I didn’t die then when no one knew what was wrong with me, I’m unlikely to now I know what’s going on *touch wood*.
The other side of it is that I’ve had to become very practical about it. If I sit down and think about it, it’s a bloody scary illness. Lots of things can kill me. If I have a minor car accident, I could be critically ill fast. A stomach bug is potentially life threatening. I rang an ambulance once because I opened the oven door and the temperature and bending down sent me into a hypoadrenal episode (suffice to say I don’t use the oven anymore). But equally anyone could also cross the road and get run over and die. Yes death is a lot more likely in my case, but if I worried about everything that killed me, I’d never get out of bed.
I do get scared sometimes but I have to be conscious unless I’m with my nurse friend(s) in case I need to give very specific instructions about my care- the joys of having a rare illness. So I kind of close my mind off and deal with it later. There have been 2 clear times I’ve been terrified, both times I ended up in resus and I had a lot of people running around after me very quickly. One of those times I’d rung the ambulance by myself so had to deal with it all alone. The problem with going to hospital a lot is you get clued up to routines and jargon. So resus symbolises a ‘crap things are bad’ moment for me and I understand all the things they’re saying and know exactly what bad obs and the various alarms mean.
So why wasn’t I scared when my nurse friend got my injection out? Well I was a bit, because if he felt the need to use it he must have been worried. But I also knew that if I did pass out, I had him, my husband and my friend there so someone would be able to sort me out. I rarely have that luxury!
My main fear about adrenal insufficiency tends to come out in the fact that I don’t like being/can’t be left alone for long periods, especially at night. I’m not safe to make meals and do a lot for myself for one thing, but if I’m going to have a problem, it will likely be at night since that’s when I feel worse. So it reassures me having someone with me who can at least point out that something is wrong and prompt me to take medication or call an ambulance. Because anxiety makes me more ill, just the fact that someone is nearby helps a lot with that- that’s why I joke about having a babysitter. My second fear is not being taken seriously by a medical team. It’s less of a problem now because I’ve got alerts set up on the systems by my doctors/the ambulance service, but there’s nothing more scary than having a life threatening, time sensitive illness and having someone who hasn’t heard of it refusing to treat you (it happened a lot to start with and was pretty damaging!). I got used to having to put across a reasonable, controlled and rational argument to doctors when seeking emergency help, because if I didn’t, they would listen to me even less. It’s kind of stuck.
So yes. If I sit down and think about it, I do get scared because it’s a scary illness and a lot rides on me being with it to explain it or to be able to do my injection. But I plan my life sufficiently that I cover the obvious problems, and the alerts are set up, I wear medical ID, carry instructions and have emergency contacts on my lock screen of my phone for the hidden gems life throws at me that I can’t plan for. I wouldn’t be human if I said I wasn’t a bit scared using my injection, but that specific emergency was the least scary one for me I’ve had so far, largely because I knew my friend was looking after me! 🙂