I panic very easily. Little things often cascade into very big things and it’s difficult to not feel as if its a slippery slope where one becomes ten within a matter of minutes around every bend. I went for a walk into two with my new personal assistant and husband in tow and as we approached the bus stop where we needed to cross the road, a bus pulled up. She stopped and waited for it to pull out before crossing and incidentally parked the wheelchair right next to the exhaust pipe. I had an asthma attack, she struggled to quickly sort out my inhaler, but ten minutes and six doses of Salbutamol later, we were on our way again without it ending in disaster. This afternoon I woke up from my nap with very low blood pressure and as I started to sit up, my pulse skyrocketed and it dropped even further and so I lay back down again. My postural orthostatic tachycardia has been particularly bothersome during the last few weeks and there is just something inherently disturbing about a heart rate that’s somewhere between 100-150 and just that little bit irregular. Listen to it and when my mitral valve intermittently prolapses, there’s also the swishing sound of blood flowing backwards just a bit as the valve goes floppy which evokes an emotional response. I struggle to feel calm when my body is acting as if it’s panic mode. Racing heart, sweaty palms, racing thoughts, difficulty finding words, connecting dots and expressing myself and then there is the spinning, the loud ringing in my ears that makes thinking even harder, the headache, the shortness of breath, the blurred vision, feet turning cold and blue and of course, the disorientation. I muddle through it somewhat, but I don’t feel calm. I feel disconnected and out of touch and at odds with with world and even worse, myself.
My breathing has been patchy since yesterday and as I lay staring at the ceiling, chatting through instant messaging on my phone, I slowly began to forget about all these things that were feeling very wrong. The house was quiet, the room was warm but quite dark and the bed was very comfortable. I relaxed, felt as if some spring inside was unwinding and although my thoughts still felt disconnected, I didn’t feel as if it was hindering communication. I could at least think and talk about one thing, not more than one thing, but one thing is very good, particularly when the one thing I am focusing on is not health related. I forget about health stuff, I forget that my heart is racing and my brain is lagging and it’s a better place to be. I feel better. By now, thirty minutes have passed and my blood pressure is going up and my pulse is going down and it’s all going to be okay soon. I’ll be able to get up without fainting and that’s a big bonus. Then I ruin it, just the way I have a tendency to do. I get stressed out. Sometimes, the things I get stressed out about are worthy of being stressed about, other times it’s little things that shouldn’t even be worth a notice, but most of the time, it’s just me reacting badly when I see a slippery slope on the horizon where one can potentially become ten in a matter of minutes. And I panic. My heart rate goes up, my blood pressure down, the room starts spinning and it all reverts backwards to where I was when I woke up. And that’s okay, I was expecting that. What I wasn’t expecting was the ensuing asthma attack.
There’s a difference between hyperventilating, being short of breath or having an asthma attack. It’s not always easy or possible to tell the difference, but when you start to cough, turn blue around the lips, wheeze loudly on every out breath and your chest feels as if an elephant is sitting on it, it’s time to pull out the spirometry metre just to check and the trusty old blue inhaler. I did. It didn’t help. I tried not to fixate on it, feeling that other things that had my attention were more important and if I just take a couple more puffs it’ll clear up and be fine and wouldn’t be worth a mention, but the logic didn’t hold up. My breathing didn’t improve. I sat up, leaning forward onto a large blue exercise ball and tried not to think about not breathing. It wasn’t going to go there, don’t worry, stay calm, don’t fixate, asthma attacks are happening two or three times a day again and it’s nothing worth mentioning. I couldn’t relax, I was getting more and more stressed out and that’s when the contractions started. It’s the second time this week I’ve almost gone into labour. It’s not a nice feeling and noticing that the contractions are regular and getting stronger at decreasing intervals is not something I want to be thinking about. I open up another bottle of water, ease back a little hoping it won’t damage my breathing that’s barely holding on and try to think happy thoughts.
Staying calm and finding something by myself that instantly calms me down isn’t something I can do on demand. Whatever thought I choose, whatever near perfect moment in time I pick, an ominous dark reminder of something bad attaches itself. I try to think about the things I have but instead I end up thinking about the things I’ve lost and the things I have to loose. And so I curl up with a pillow, snuggle with the cat and let myself think of all the bad things that has happened and everything that has gone wrong. I’m reminded of people that I have cared about a great deal and lost and about how heartbroken I was when I was diagnosed with EDS and had to give up playing the piano every day. I think about how much I love swimming and how the chlorine affects my breathing and so I can’t frequent the pool as much as I would love to. I think about how I use to cycle late afternoon down tree lined avenues with the wind blowing in my hair and how amazing it was the first time I cleared out Naxxramas on a 25-man guild run despite joints dislocated a dozen times during the evening. I think about how I wanted to be a novelist when I was nineteen and how I had to quit my university degree because I was too sick to study. It makes me sad, but it also makes me realize that all the things I’m afraid of is not that scary. Life has been interesting to put it mildly, but I made it through all of that and still have a pretty good thing going now. The slippery slope is not that slippery and the hill I’m worried about tumbling down not that much of a drop. I curl with a pillow and my cat, focus on the baby kicking and think about dressing her in a Brutal Legend outfit and then I start to think about the things I have accomplished in my life. The people I have met, the family and friends I have made, the hobbies and habits I have picked up and cultivated and the apple tree I have in the garden that grows apples I don’t eat, but, but, I have a house with an apple tree in the garden, that’s something.
I have worried, I have panicked, I have cried, catastrophize the world into a premature armageddon and suddenly I am reminded of a line from an old favourite poem by Anne Sexton, entitled for John, who begs me not to enquire further and it goes something like “I tapped my own head, it was a glass; an inverted bowl. It is a small thing to rage in your own bowl…” My thoughts drift toward Reach and the first time I played the opening mission and as I rounded the corner and saw the view down a very long drop, I just had to stop and stare at it. Games aren’t about graphics, it’s about the story, but when you’ve gotten so involved in the story that the characters and the planet and the plot are things one is intimately familiar with, it’s the small details that brings it home again. It’s my favourite universe, ODST and Halo 3 were my first co-op games and gaming was just never as much fun by myself as it was playing with someone that removed all the frustration from it without playing with nine or twenty-four other people that I didn’t want to frustrate / disappoint / let down. Thinking about it brings back good memories. It’s easy to jump the gun on things going horribly wrong, particularly as they tend to go wrong rapidly and often with no or little warning. It’s scary too. It takes time to realize that life isn’t about averting crises, it’s not about avoiding loss or catastrophe, it’s about dealing with whatever it throws at you in a way that you can look back on with pride, knowing that you did everything you could, you played your part to the best of your ability and that sometimes, no matter what you do, bad things will happen but it will always be okay eventually, regardless. Whatever you do, do not preempt tragedy. Just because something bad could happen, doesn’t mean that it is going to.