I’ve explained quite a lot about the science behind my condition. But I don’t think some people fullyget it yet, possibly because I’m quite casual about it. So maybe I need to spell it out more clearly.
Adrenal insufficiency can kill me quite easily. It’s not like having migraines, autism or depression (I’ve just picked 3 random conditions, it’s not a pointed comment, I know they’re still debilitating and I’m aware of exceptions) where it interferes with your life, you have to live around it but it’s not life threatening. It’s not even like having asthma or diabetes, which can be tricky to manage and life threatening in the event of illness or contact with triggers, but is still manageable (again, there are exceptions). At the moment, my target every day is to stay out of hospital and/or not die. If I go to hospital, it’s because I’m critically ill. It’s not the dramatic ‘charging…clear’ version of critically ill you see on the TV, it’s the ‘if not treated appropriately I could go into a coma or have organ failure’ type of critically ill.
Here are some of the things that have massively contributed to/directly caused me going to hospital:
– being in an argument/someone really annoying me
– standing up/walking for too long
– going shoe shopping
– upset stomach
– not being able to get on top of my asthma symptoms on a damp day
– flying on a plane
– my bank ringing me and telling me my card had been cloned
– not getting enough sleep
– someone jumping out at me for a joke
– bashing my head off the cupboard door
– playing my clarinet
– hot weather
How many of those have you done today or this week, or do without thinking? Did you think ‘I can’t do that because I might die’? It’s not a case of pick one of those from the list and I’m definitely going to end up dialling 999. It’s more like a glass of water. Some days the glass of water is already 3/4 full when I wake up, some days it’s half full. It depends on how much it got filled up the day before by some of those things or others similar.
So if I don’t sleep well, the glass is 3/4 full when I wake up. So I would avoid walking or shoe shopping that day. That’s pretty obvious, I can control that. But I can’t control if my bank ring me, which takes me up to the top. And then because I’m worn out by carrying my full glass around, I get clumsy and hit my head off the cupboard. That’s the tipping point, the water overflows and I go to hospital. If I manage to keep the water level in, it’s still full the next day, so if it’s a hot day, that could be the tipping point. Rest and hydrocortisone can help empty some of the water and lower the level, but it’s not an exact science, I have no way of checking the water level myself and it depends on how hard I whack my head (for example).
Having adrenal insufficiency means I spend a lot of time scanning through things, weighing up the ‘risks’ and working out how I can prevent the water overflowing. It’s a bit like security at the airport or bodyguards for presidents. They’re on the lookout for something that could threaten life, they’ll take out anything that looks like it might cause a problem, but there’s no actual way of knowing for sure if they’ve failed until the bomb goes off. Sometimes they might be overly cautious, sometimes they might miss something or something slips through. Would you want to risk getting on a flight where some of the bags and passengers hadn’t been through security, thinking ‘I might die today, but I might not’? Or to go for a parachute jump and for half the kit to have failed its safety inspection? The parachute might open, it might not? That’s pretty much what my life is like. Except I can’t refuse to get on the plane or jump out of it. I have to do it anyway.
That said, I (along with everyone else) could get run over by a bus. There’s not a lot of point in worrying about it. Two points I’d like to make though:
– if I say no to you, my glass is already full. I’m not being awkward, I just don’t feel like dying that day.
– I don’t get used to it just because I’ve had it for a while. I know who my real friends are because they’re still keeping my morale up, messaging me and want to see me, and I know the ‘friends’ who make all the right noises and let me down, or only visit when it benefits them somehow (that comment was pointed FYI). I might not have an illness which people can immediately recognise as something ‘bad’, but the ‘don’t die today’ target is the same.