When your Ventolin inhaler hasn’t kicked in after fifteen very long minutes and your pulse is creeping steadily upwards past two hundred whilst your systolic BP is comfortably in double digits, it’s difficult not to panic. After four thermometer readings on two reliable and tested thermometers return with the error message ‘low body temp’, it’s time to think about A&E departments and ambulances as you may now be entering the world of shock.
The worst part of having a rare genetic disease that nobody has ever heard of, is that it featured as a three line paragraph in doctor’s years and years of training. From previous A&E trips I have learned the following: the vast majority of doctors don’t have a clue how to treat me. My body does odd things that they’ve just never seen before. Joints dislocate without prompting. I get hypothermia at temperatures significantly above freezing which is usually an indication of bad things starting to go ver wrong and local anaesthesia doesn’t work at all. Neither does stitches. My BP and pulse fluctuate wildly like an untreated diabetic’s sugar levels. Name it, and my weird collagen which is part of every cell in my body, affects it in some weird way.
It’s not fun trying to explain that I can’t be treated the way everybody else is treated. I can’t take most drugs, bad things happen. I can relocate my own joints, I just need a little help when I occasionally get tricky ones wrong and end up pinching an artery or nerve. Local anaesthetic doesn’t work and I’m fine with it, just get stitching. Be aware though that stitches easily tear out. Really. No, I’m not exaggerating. See for yourself then. I’ve learned that the doubting Thomas approach works best for doctors, but not always for me. Don’t believe me? Shall I rotate my wrist quickly or just pull my thumb to demonstrate how dislocation works? Wan to inject me four times with lidocaine and when I still have complete sensation, believe me now? If it wasn’t so painful, I would’ve laughed watching a seasoned ER doc stitching up my arm once, or well, trying to, and the complete incomprehension on his face when the stitches just tore straight through the flesh. Lovely. Believe me now?
It’s been a cold day. Cold is bad. I got a little distracted and involved today and didn’t notice that I was getting colder. I reside in a permanent state of mild hypothermia on cold days and the worsening can be deceptively subtle. I did notice when my breathing went. As I have brittle asthma type 2, breathing issues tend to be rather serious. Mental check list pulled up: New inhaler straight from the box. Check. Adrenaline shot. Check. Clock. Check. Chris on chat in case I loose consciousness. Check.
Turn on the heating, Chris says. We can’t afford it, I say. Turn on the heating now he says. I can see the air coming out of my mouth and wonder if this is one of the days for which we save up to make an exception. Maybe it is. I turn on the heating. Then I start to feel dizzy and panicky.
Calm down, Chris says. I panic. Calm down or you’ll dislocate a rib with that breathing. I listen. Think. Remember when it happened and how painful and scary that was. Remember how crappy it is when hyperventilation confuses your breathing symptoms and you don’t know what’s going on.
I force myself to calm down. Severe breathing problems isn’t that severe if you can still breathe. I try to relax and remember that we’ve done this many many times before and it always turns out okay.
Prior experience is sometimes a bit of a liability. It means that I’ve grown a little too accustomed and comfortable with risk. It means that I don’t follow instructions well. I’m suppose to call an ambulance after five minutes of using my inhaler each minute and my breathing hasn’t improved. I give myself fifteen minutes and an adrenaline shot before time is up and it’s emergency dial time. If I called an ambulance based on the average guidelines for all the conditions I have, I’d live at the emergency room.
Ten minutes and my lips and mouth are an ethereal blue. Wheezing has stopped which is a bad thing. I’m not getting better, I’m getting worse and my airway is too tight to let enough air through to allow wheezing. I remove the injection from the packaging and start skimming the instructions just in case. Twelve and now I can’t breathe at all. I’m a classic case of histrionics who will breathe panicky to Chris over the phone ‘can’t breathe, can’t breathe’, when I have a less severe attack, but when it actually happens and I really can’t breath, I am calm. I am no longer sinking. I am sitting on the bottom of the ocean floor looking up at the light through tons of water above me. It’s like choking or being submerged in icy cold water. I am no longer panicking.
I still remember the panic from when I was about three, but now it’s like being rolled by a wave. You’re underwater and you don’t know which way is up, but the more you struggle, the worse it gets. If you just relax and have faith that it’ll let you up, you’ll be okay. Just remember to jab yourself with the adrenaline shot before you pass out.
I pass out. I do not tell Chris until it’s all over. He checks every five minutes and if I don’t respond, sends an ambulance. I don’t want an ambulance. I don’t want the day or the week in the hospital that can trigger. I don’t want more specialist appointments and tests. I want to stay home and play World of Warcraft and listen to music and snuggle with the cat and play my piano and sleep next to Chris at night.
Fifteen minutes and one injection later I can sort of breathe again. Body temperature still too low to register. Pulse now nearing 300. BP very low. Improvement. Have to focus on the positive. My heart can handle running at four times it’s usual pace for a bit. I breathe a sigh of relief. Shouldn’t need a trip to an A&E in the snow. Shouldn’t need Chris to come home from work.
Two hours, blankets, a hot drink and warm cat later body temperature up to 33.8 C. Pulse 160. Breathing just about possible if I stay calm and relaxed. No talking, no moving and I can feel some oxygen trickling into my lungs. Adrenaline buzz takes full swing. Now I really can’t bring myself to care if I am conscious or not, can breathe or not. I’m suppose to be monitored in hospital for at least 24 hours afterwards, but I have more faith in my personal monitoring skills. Chris check in every fifteen minutes and I curl up on the couch with a movie. The aftermath is almost worse than the event. I feel as if I have the world’s worst hangover and my heart is protesting wildly and constantly. It makes my chest hurt. My thigh is bleeding and badly bruised at the injection site. But I can breathe and it’s a comfortable thought.
I’ve been worrying about a great many warcraft related things lately, but in that moment when your breathing stops and it feels as if you’re trapped under a rolling wave of water, priorities are suddenly clear and everything pales in comparison to the anticipation of that next breath which may or may not happen. Today, eighteen hours later, I’m curled up on the couch watching the trees sway in the wind and sitting here, breathing in and breathing out, I am content. My pulse is still uncomfortably high, but for now, just breathing is enough.