Adrenal Insufficiency means I don’t have a proportionate one… I was trying to explain it to my husband and it occurred to me if he doesn’t fully understand it and I spend the most time with him, other people wouldn’t get it either. Hence this blog. For example, I get really annoyed by sudden changes in direction from what I’m expecting when he’s pushing me in the wheelchair, or why I hate the TV being ‘too loud’, even when it’s not.
A startle response is when you get a bit of a shock from something changing from what you’re expecting. It’s on a scale, so minor things include dropping something you’re holding to something more major like someone making you jump by creeping up behind you or swerving to avoid an accident when driving. It also depends on how tired or aware of your surroundings you are as to how your body reacts to being startled.
In a person without adrenal insufficiency, you might feel a slight adrenaline surge when something happens and cortisol kicks in and regulates what’s going on to a proportionate response. So you drop the book you’re carrying and it lands near your feet and you think ‘oops’, but by the time you’ve picked it up, you’re feeling normal again. If you’re feeling tired or worn out, you might feel a surge of emotion like irritation or frustration, but, again, it’s usually short lived. In someone with AI, you have the surge in adrenaline, but you don’t have the cortisol, which means your body starts to react in the same way as if it were a lot more serious e.g. like just avoiding falling down the stairs. It keeps making adrenaline in random little surges until it works out that the ‘threat’ is gone, and it’s not short lived. Something really basic like that makes me feel a bit sick and like I’m going to pass out for a long time afterwards.
That’s for something really minor though. Imagine if someone pulls out in front of you when driving. My husband would brake suddenly and beep the horn, like most people would. You get that surge of adrenaline and emotion following, but the emotion sticks around for a bit longer because someone was an idiot, and, in more severe cases of ‘near miss’ (or road rage), someone without AI might feel a bit shaken up and jittery for a little while afterwards. Some people might need to pull over and take a few deep breaths to calm themselves before being able to carry on. In me, I have the same response as though (what I imagine anyway) someone has had a gun to my head and they’ve decided not to shoot. Part of the danger has gone away, they’re not holding a gun to my head anymore, so I feel relief in the same way and have a massive surge of adrenaline, but my body doesn’t recognise the danger is over because the ‘gunmen’ are still in the room shouting at me. So my body goes into overdrive and starts seeing threats in everything, even the small things. My senses are heightened and I’m on red alert. My heart would beat really fast, there’d be a lot of adrenaline, I’d be shaky and sweaty and probably cry. Some people would vomit or faint in that situation because of the amount of stress they’re under from being in a dangerous scenario (that’s all the start of adrenal crisis). Except there’s no gunmen for me, my life wasn’t really in danger because my husband reacted and put the brakes on, but my body doesn’t see it that way. It’s not an emotional response to what’s happened, it’s a biological one.
The thing with life is, you can’t mitigate against every little cortisol draining scenario. Taking my tablets is like filling a glass with water and things which startle me is like tipping it out or drinking from it. If I don’t fill up the glass (take more medication) then when the glass is empty, there’s nothing left and that would mean I’d go into crisis. If the glass gets a crack in it and pressure starts to build because I have a lot of stressful situations in a short time, there’s a chance that even the smallest thing might cause the crack to weaken and all of the water come rushing out at once. Or if I’m already having a bad day, the glass isn’t made out of glass anymore, it’s made out of cardboard where water is slowly seeping through the sides as well as emptying and it could all fall out the bottom in a soggy mess. But it also might not, and it’s hard to predict when and how things will happen.
The way I get around it, is I try to ‘catch’ my emotional response to things before that exacerbates the biological response further, which is hard- and it’s only a fraction of what goes on, but emotion is the ‘bit’ I have some control over. I try not to get sucked into small things like feeling annoyed after dropping something, for example. I also try to predict the small things which might happen so that I’m mentally prepared and the startle response is less extreme. So if my husband is pushing me in the wheelchair, I try to work out the path he’s taking, which is why I get so wound up when he changes it or stops suddenly. Or likewise with the TV- if we’re watching something violent or thriller- ish, I ask him to turn down the volume so I jump less. He’s also got quite good at warning me when things might happen! Or we don’t watch things which might make me jump if I’m already having a bad day, or I don’t watch them at all. The trouble with making predictions is that it’s not actually a helpful thing to get into the habit of doing if you also have depression because it can lead to catastrophising small events which feeds your depression. It’s finding the balance between safeguarding yourself for AI and making things worse for your mental health, which is bloody hard!
This is also why I don’t find certain jokes funny. I turned the washing machine on once after my husband loaded it and he said ‘did you remember to take my phone out of my pocket first?’ To him, this was clearly a joke because he’d put the stuff in, I just pushed a button, but to me, my stress response was as if he’d told me he’d been in a car accident and had gone to hospital. It took me a few good hours to get over the prank, even though it was essentially nothing! Or if something serious does happen, like when my friend was actually in a car accident or when my niece was critically ill, it’s helpful to me if I’m told after I’ve taken hydrocortisone so my body is more equipped to deal with the shock.
I’m not sure my husband fully understands it yet, because it’s a hard thing to describe! Especially because it’s such an extreme reaction to seemingly small things. But suffice to say that there’s a lot going on in the background with your body that you don’t really fully appreciate until there’s a fault in the system somewhere.