There are a lot of things in my life, or about me, that some would say is atypical. One of those things is my asthma. When writing, it’s hard to incorporate physical elements into a character that you don’t have first hand experience with, and so I thought would share what my symptoms are, and how that affects my judgement and actions, to better help other writers get a grip on it, and how to write about severe asthma.
Most of the stories I hear of asthmatics all start when they were kids. There were some signs when I was a kid, but to most people I just looked like the geeky kid that didn’t try hard enough.
“Why are you sinking in the pool? Try harder!” – Someone needs a lesson on buoyancy.
“Come on, run! Get the soccer ball!” – Someone needs a lesson in how engines work, you need fuel and what? what’s that? oxygen?
I had a couple of breathing incidents in my mid to late thirties, but it was when I had my appendix issue that it sneaked in under the radar and repaired to pounce. It attacked regularly, hiding behind a curtain of other symptoms until finally it hit me. Details below.
The first type of asthma attack that I experience is comparable to being in a pool and having only your head out of the water, and breathing. If you’ve ever tried to do this for a while, say 10 minutes if you can, you’ll feel your muscles get tired and it becomes a challenge to push your lungs open.
From my point of view, the first feeling is that the air is too dry. It’s funny, but it’s like there isn’t enough “good air” available, and the sense in my lungs is that it’s too dry.
I start to notice that dry air feeling, I start to wonder if I’m imagining it. Then my upper body muscles engage, trying to pull my lungs open more. It’s unconscious at first, and relatively subtle, but those muscles quickly get tired.
A sense of anxiety starts to creep in, and makes me wonder if this is really happening. This slowly builds, and the sense of the air being dry increases. I think about using my emergence blue inhaler in my backpack, knowing that it won’t do a lot of good but it’ll do some. I don’t want to use it, because I’m still convinced (not having grown up with the condition) that I’m just imagining it.
When my hand starts to shake a bit, or my body feels a bit heavy, or I start to sweat, then I know I need the inhaler and/or need to sit down. Sitting down is a relief, and I immediately slouch. Taking the first pump, I straighten up as much as I can. I know I’m supposed to wait a couple of minutes before the second pump to have its maximum effect, but I rarely last more than another minute before taking the second one. Then I wait. Sometimes I take some painkillers (Tylenol) to numb things a bit, it almost feels like the painkillers attack the anxiety more than anything else.
Getting into cold, slightly moist air breathes new life into me. I seal up my house, and look at the outside. Even if it’s not that hot out, sometimes I have the air conditioning to clean the air and keep it just right. Too hot, and I can’t breath. Too smokey? can’t breath. I look at the world and feel both safe from it, and trapped. More often than not, rather than feeling I’m in a cage, I feel like I have locked the world in a box and I’m ‘outside’, in my house or office or wherever.
Asthma Attack – Type 2 – Demon Grip
The second type of asthma attack that I’ve experienced is where it feels like someone has reached into my chest and is holding my heart, and stopping it from beating outwards.
Suddenly everything feels wired to my heart, meaning if I even move my arm or take a step slowly, it hurts. Moving my chest to breath feels like moving stone walls.
It happens the span of a couple of seconds, and happened before I managed my asthma with the proper medication. If I mess with the medication, let it lapse, etc. this can happen.
The feeling brings with it a sudden feeling of panic and I start sweating. I have to fight fear in my mind while I feel the pain in my chest.
One of the things that I’ve learned is that the sense of where the pain is coming from is kind of faked out, meaning it feels like my heart but it isn’t. I tell myself that, I tell myself I’ve been through it before, but it doesn’t help.
The first time this happened I was walking my daughter to school. The first twenty yards, I felt okay, then in the span of five yards I came to a stop. I tried to take another regular step, and couldn’t because of the immense pain. Very slowly I walked her to school, not believing what was really happening and swallowing the pain, hiding it, as I didn’t want to make her panic.
On my walk back, the pain got worse and I stood, frozen, in the soccer field alone on that autumn day, my eyes full of tears, wondering what was going to happen. After about ten minutes, it dialed down one notch, and I slowly shuffled my way home. It slowly calmed down. This was likely induced by the autumn molds in the air.
While the Demon Grip can happen when I’m sleeping, it’s rare. It’ll walk me up. The Penance will cause me to rouse, as my chest and lungs stiffen, and my quality of sleep significantly reduces. The Penance can also slowly worm its way into my day, as the weather starts to change or the pollen shifts around, etc.
If I starts at night, then I wake up in the morning and feel tired, drained. Within an hour I want to go back to sleep. My chest doesn’t feel especially tight or heavy at first, but if I really think about it and pain attention to it, often I can get a hint that things aren’t normal. I might take my emergency buffer and some painkillers, on the advice of my wife who can recognize when this is happening (because my mood is sharper, and my patience less).
The feeling is like that of wearing a lead vest. My upper body muscles get sore and tired quickly. I get frustrated at not being able to playing with my kids the way I want, and I feel exhausted. My wife feels like I’m not engaging with the family, and that it’s like I’m a ghost of myself, though she logically knows what’s going on.
The Penance can last days in a row and really grind me down. Sleep is a relief for a little while, cool air as well, but I can’t sleep for long and it’s like I get 5 minutes worth for every 25 I spend in bed.
After the Demon Grip happened a couple of times, and Penance was happening regularly, I got tested. Everything came up normal. I had 88% of the breathing capacity of an average, normal man. Fortunately, my doctor believed me and not the test results, and so I got the attention of a specialist.
She did the tests again. One of those tests is where you breath or blow as hard as you can, into a tube, in a pressure controlled glass/plexi chamber. They add pollutants to the air you’re getting and monitor how much air you can suck in.
In the typical asthmatic case (95% of people apparently) they are able to pull in less air, which drops them below 80% capacity and therefore identifies them as asthmatic. In my case however, it caused pain. The more pollutant, the more pain. It got to the point where I had tears streaming down my face and had to ask them to stop because I couldn’t take it after 55 or 56 of the 60 rounds I was due to go through. Waking up from abdominal surgery with no painkillers in my system didn’t hurt as much as that test. I’ve had to do it twice.
The specialist who looked at the results realized a couple of things. Firstly, from the x-rays, my lungs were longer than normal (I’m a bit over 6 feet tall). That coupled with some other data, led her to determine that my ‘normal’ would be about 125%, so therefore being at 88% was very significant.
She told me of four classes of asthmatics: (these are my terms)
1. Minor – Takes the classic blue puffer (aka emergency puffer) when needed, maybe before sporting events
2. Medium – Takes a brown/orange puffer every day, uses blue buffer when needed.
3. Severe – Uses brown/orange puffer x2 a day, plus blue buffer or stronger daily, plus uses blue buffer when needed.
4. Critical – Medical facility treatment and management.
She put me between 3 and 4.
It took months to tune the medication just right. I take a blue puck every morning and night, plus a brown puffer every morning and night (was double that until a year ago) plus I take a pill. It costs me about $300 a month, and that’s with Canadian medication pricing.
On top of that, for when Demon Grip or Severe Penance is occurring, I have Prednisone. Prednisone is one of those drugs that they give in graft or organ replacement as I understand it, it’s goal is to pretty much turn off your immune system so that it stops attacking itself, which ultimately what asthma is about. It’s a drug you can only take a couple of days worth, and if are on it for a week, you need to come down carefully off of it. It caused me to gain 15 pounds in 15 days. It brings with it an artificial sense of being hungry, and it feels artificial, but if you’re not paying attention you find yourself overeating or drink too much liquid because you’re always thirsty.
The medications I’m on are better than some I tried. A side-effect is they cause my muscles to tighten, sometimes my toes to curl. Double up on the blue puck and I feel like superman, but as I understand it, I can severely damage my heart. Skip any of them, or cut the dosage (like my doctor & I tried with the brown one, and succeeded at) and it’s 60 days of withdrawal where you feel like you’ve got extra-strength Penance going on.
The single hardest thing to get used to, this having happened in my adult years, is that it is never going away. I am barely used to the idea of taking my medication every day.
At first, I took it without problem but then my rebellious side got angry at the sense of dependency. I tried to reduce it, tried to cut out of the three out completely, and felt like I was beaten back. Mentally it is very hard to be an independently minded person and be forced by your own body to take pills and puffers just to breath, just to be almost normal. To not even be ‘fully normal’ out of it feels like an additional bit of robbery.
I am chained to this fate. It limits some of the things I can do, and makes me aware of things I should be careful of. Some would argue that you shouldn’t accept the limits, and there are few limits that I accept in my life as those that have come to know me even on Twitter can attest. I’m in a group of asthmatics that even the new specialist I’ve seen here in Calgary looks at, with his aged wise eyes, and says “You can try to exercise and do the right things, but it isn’t going to help you much. You need to take care of yourself, watch out for triggers, be smart. Do that, and you’ll do fine.”
Recently with a new doctor we worked on reducing one of my meds. The reason wasn’t to try and get me off the medication, but rather he was concerned that the level of steroid that I was at was so close to the maximum that if I ever got into an accident, or had a breathing crisis, the medical professionals who would attend to me would have few, if any, options or that the steroids they’d give me would have little to no effect. I don’t feel as capable as I did when I was on the double dosage of the brown puffer, but I now feel, a year later, about 90% as capable. The trade-off is worth it.
The religion imagery of penance and demons come from the feeling that this is supernatural or other worldly, regardless of being religious or not. There’s this sense that this is evil and that it is robbing you of what you are due or supposed to have. I could have used other words but I felt these would better set the feeling in the readers mind quickly. If you’d like to discuss other analogies as part of your writing, always feel free to ping me on Twitter or email me.
There’s an article on EverydayHealth.com about me and asthma.