Archives for October 2009

Now that we’re past the basics, I thought I’d take a moment to talk about some best practices for coping, both for the asthmatic and their partners; and in fairness, I need to mention his is all first-hand example, so be aware and if you’re trying to come up with some methods, don’t rely on this as a pure how-to. More like how-I-did.

For the Sufferer: Learn about your illness, dammit! I can’t stress this enough. And research is not the most helpful thing in the universe, trust me. I spent a couple of hours before writing this doing research and, man, am I ever depressed. When I talk about learning your illness, I mean study yourself. When you’re recovering from an attack, try to figure out how bad it was; should you have taken other action, is it worth discussing with a doctor, what set it off? This will make your life a lot easier, because it will make you more informed than any clinical study ever could about where your own personal limits are, and how your illness interacts with the world at large.

Food allergy? Easy fix. Pet allergy? Easy fix. So much of what causes asthmatics to have terrible life experiences is no big deal, if you pay attention to your surroundings and make yourself aware of the changes you can make to maximize your time without symptoms, and minimize attacks when they happen.

For the partner/family member/friend: RELAX! Please! If you’re caring for someone who has trouble learning the limits of their illness and what triggers them, help with this process, because it will reduce your stress levels too. If you’re caring for an informed patient, then let them tell you what to freak out about.  know this is counter-intuitive, but when your wife/husband is wheezing and audibly having trouble breathing, look at their expression for a moment, see if it’s something they’re active in coping with, or if it’s just another day at the office.

Ask questions, and don’t be afraid to nag; your experience of this chronic disease is going to largely depend on how they cope with it, granted, but your experience of THEM is, let’s face it, tempered at least in part by how much compensating you have to do for their ease or trouble in coping with it.

Always remember: This illness does NOT go away. It’s like a volcano, there’s no such thing as extinction. An asthmatic can go for years, even decades, without ever having an episode, but until some megic bullet is created, anyone who ever fit into the moderate to severe classification will always have to retain their inner discipline and watch out for attacks. It’s no joke, this disease is life threatening to anyone above the “mild” category, and even then, the right trigger can do sme pretty heavy damage.

You don’t have to fret about it 24/7, but it’s worth ensuring that approrpiate steps are in place – what those steps are entirely depends on your experience of asthma itself. For me, these steps are bigger deal than for others. And I’m starkly aware that I’ve got it easy compared to some.

I was aiming at talking about why I don’t contribute to research, and my opinions on the public view of this illness… But after this week of writing, I honestly don’t think it would contribute much to this series. Instead, tomorrow I’ll end with a quick sum-up of the posts, and do some digging for helpful resources to share with fellow asthmatics out there.

This post deals with the affordances that sometimes must be made to deal with asthma, and a number of things that sufferers can view as shackles. I’ll start off, however, with defining what I mean by the term actionable event.

When I was fairly young (I’m talking between six and nine, here) I have sharp memories of what the hospital in my home town smelled like, the directions from admitting to five (or more) examination rooms, and I still gag at the smell of freshly opened plastic anything because some of my most clear memories of childhood involve spending an hour or more breathing high-oxygen air mixed with ventalin out of a new-plastic mask strapped too-tightly to my face as I lay in any of these five exam rooms.

This is because I had a high density of actionable events. This is a fairly new term I’ve begun to use for anything that happens regarding my asthma that actually requires more steps than saying “someone get me my inhaler, please” and sitting down for five minutes to mashall my breathing. In some cases, an event requiring action is as simple as making an appointment to check in with my doctor the next day, or later the same day. Sometimes it means leaving work to sleep because breathing heavily takes more energy than running marathons for asthmatics, and getting myself back under control can leave me exhausted for up to five days after a perilous attack. In other cases, this can mean short-term hospitalization.

Part of the reason I’m writing this series is because I had an actionable event last month. I had run out of medication – both my daily meds and my rescue inhalers – and had no way to get in touch with my doctor. Actually, I had been out since about June, but because I’ve been getting in shape, and it was summer, I had no issues. Last month my cats (which I’m allergic to) began to shed, and the weather started to change just enough to affect me. So I was left, unmedicated, having been near animals, with damper weather than I was used to, having an attack at midnight. It was controllable, I managed to get to sleep which is pretty much a universal fix for attacks in my world, but it did require me to seek out a free clinic the next day and beg off of work. It also put me back in a MedicAlert bracelet.

My shackle. I wore a bracelet for much of my childhood without much thought. I was already stuck with an inhaler, the most epic of geek indicators, so what was a bracelet? Now, however, it feels much heavier than just another piece of metal about my wrist. I’ve worked very hard to reduce the impact asthma has on my life since leaving school, but because of the bracelet – the shackle – I’ve had to ensure that at least three people at my workplace know urgency cues, are always apprised of where my inhaler can be found, and know what information to give people if I suddenly fall over. I’ve also had to let it be known that any perfumes worn to work are very harmful to me (as a blanket, since most of them really aren’t a big deal) and that if I see any customers bring a dog of any kind into the store, I’m gone for half an hour for medical reasons. My cats I deal with through force of will alone (because I love them) but if I’m within fifty feet of a canine, and I react, I’m in the hospital. No middle ground.

It’s better than it used to be. Before last month my last actionable event was inearly 2002 – a seven year gap is absolutely huge in my world – but having to put the old clankers back on, own up to my “disability” and get mostly confused reactions at work and in my social life… It’s distressing, to say the least. But, in time, it’ll be another year since my last event, then maybe I’ll let myself ease up on paranoia. But I still have to keep my inhalers about and full, and I still have to wear this damned bracelet.

Next round I’ll be going through a few examples of best practices for coping, both for the asthmatic and their partners.

In my previous post I promised I’d talk a bit about my history with the medical system and how it affected me growing up.

Suffice to say that my experience with the medical system has not been stellar. Every doctor I’ve gone to since I was old enough to pay attention has summed up complaints about drug side-effects with “Can you breathe? Good enough, stop worrying about the other stuff.” This isn’t helpful when that “other stuff” is dizziness, lack of focus, loss of short-term memory, rapid weight gain, confusion, and a grab-bag of others, depending on what kinds of medications you’re on. This isn’t to say that the doctors haven’t been kind enough, but given theincreasing numbers of asthmatics in Canada, you’d think they’d know more than whatever pitch the pharmaceutical companies give them, or the latest studies of the meds they’re prescribing.

This lack of specialty isn’t their fault. The sheer density of medicines on th market for every illness is so heavy that I imagine any given doctor is at a loss with how to prescribe one over another, especially when so many of them are essentially the difference between Pepsi and Coca-Cola – brand preference based on nothing. This isn’t limited to my illness either – mental illness is even worse for a wide range of patches with no difference in their labeling, but which have hugely different effects on different people.

I’ve got no malice toward the medical industry (that’s right, I said industry) for this issue, but the habits doctors get into when prescribing can be destructive. It took me three attempts to convince my current doctor to change my dosage, because he simply didn’t believe that asthma symptoms could change. Imagine what he’s done to bipolar patients who get better at managing their troubles? Or anxiety sufferers who’ve solved parts of their affectation? It’s rending and affordance that’s at issue here.

But then, I’m a fairly educated patient, who refrains from self-diagnosis as often as possible. Doctors don’t get enough like me. I know that sounds like I’m tooting my own horn, but there it is. I’ve been on medications for the last twenty-five years or so, all my life, and more than a few of them have flat out sucked, or been totally WRONG for my case. One, when I was approaching adolescence, caused me to get the jitters so badly, to fidget so much, that a few of my teachers must have thought I had ADD. I ran around shaking my hands because I couldn’t keep them still – it HURT, physically, to be in one place for more than half an hour. Needless to say my grades suffered. Then I switched medications, and all the issues went away.

I was presented with many examples, growing up, of asthmatics who had recovered. They had either grown out of their illness – which can happen – or had trained temselves out of it. One of the guys on my biathelon team during my time with the Air Cadets, had managed to use his training to completely abolish his need for medicine. It was encouraging – until after two years in biathelon training my times were still bad, my aim horrible and the steroids I was on were preventing me from competing at higher levels because they counted as steroids, of course. Dead end. Wonderful, right?

It’s tough for a kid to cope with being tied to an inhaler. I’ll get into this a bit more in the next post; as I said in the intro post, I’ll talk about actionable events next, as well as shackles and affordances. That’s coming tomorrow.

I likely won’t be able to fit everthing I have to say in this post, so be aware, there may be a cliffhanger. For those of you who aren’t so clear on what this is about, here’s a fairly stock definition of asthma:

Asthma [original article] is a predisposition to chronic inflammation of the lungs in which the airways (bronchi) are reversibly narrowed. Asthma affects 7% of the population of the United States, and 300 million worldwide^. During asthma attacks (exacerbations of asthma), the smooth muscle cells in the bronchi constrict, the airways become inflamed and swollen, and breathing becomes difficult.

I usually shy away from using Wikipedia as a definitive source, but in this case, the information is pretty much all someone needs to know, unless they have the disease. Like I do. Here’s some more.

The National Heart, Lung and Blood Institute defines asthma as a common chronic disorder of the airways characterized by variable and recurring symptoms, airflow obstruction, bronchial hyperresponsiveness (bronchospasm), and an underlying inflammation.

The article goes on, but I’ve linked, so I won’t. This is about me. I was diagnosed with this disease before I have living memory. I’m aware of it not being at birth, that it developed sometime before – or shortly enough after my earliest memories in Launceston, Australia while my family was there during a teacher-exchange my father was on- for it not to matter. I’ve been like this my whole life.

Asthma is a frightening illness. It trains its sufferers into a mindset of apathy, acceptance and immediate mediocrity. Don’t bother with sports, you won’t excel. Don’t worry about staying fit, it doesn’t do much good. Stay in the middle of the pack, that’s where the sick animals live; you never get the best, but the system protects you from the worst, because you’re broken. Oh, and if the attack’s badenough (and there’s absolutely no way to tell which one might be) expect to suddenly, no matter how fit you are, suffocate and perhaps die. Having been through a few ‘training’ courses during my life, I know they’re about as reassuring as a terminal illness support group.

It’s so much bullshit.

Throughout the week, I’m going to talk a bit about my history with the medical system and how it affected me growing up;
I’m going to explain what an actionable event is and what shackles are;
I’ll go through a few examples of best practices for coping, both for the asthmatic and their partners;
I’ll also talk a bit about why I don’t contribute to research, and where I stand on public views on asthma. I’ll drop some links for helpful resources, and sum-up the posts, hopefully getting to my point.

If you have in your immediate circle anyone who suffers (or copes with) this illness, I’ll try my best to make this worth both of your time to read. I’d also appreciate any perspective from other asthmatics out there, as I know my perspective is limited to first-hand experience.

I’m asking for perspective here, mind. I’m not looking for sympathy here; I’ve long since made my peace with this.