A while back I wrote a post titled “That feeling”, (you can read it here if you want). In that post I described that punch-in-the gut or sinking type feeling that I sometimes get at the sudden realization that my asthma may be starting to flare again. I wrote about it because it’s one of those quirky asthma things that I thought other chronic asthmatics out there might be able to relate. What I didn’t realize at the time, is that the “feelings” I was writing about, can also ramp up ones anxiety level, making things worse.
Im writing this post to explain how, or why that might happen, and the steps Im taking to address the problem. Maybe it can help you too.
Speaking for myself, that “feeling” or the anticipatory dread that can develop from stressing over sudden symptoms, may actually be making my asthma worse at times. Its even been suggested that the anxiety caused by this, might actually make my exacerbations more difficult to manage while in the hospital, sometimes propelling me on a downward spiral that’s very difficult to reverse. In a cruel irony, I could actually be setting myself for what I fear most, like ending up in the ICU and having to be intubated, or developing delirium. A self fulfilling prophesy? Maybe it’s not as far-fetched as it sounds. I don’t consider myself an anxious person, in fact in the ER I’ve been labeled by some staff as unusually stoic for a person on the brink of respiratory failure. But I don’t care how calm you may think you are, when you cant breath you get anxious…period! Additionally, because I flare so often, I’m probably on edge most of the time without even realizing it. Just the thought of going through another major asthma flare up, when I just got over one, sends shivers down my spine.
Its not easy living with a disease that is both stealthy and relentless in its attempts to suffocate you. No matter of how compliant you are in taking your medications as prescribed, or how good your trigger mitigation efforts might be, flare-ups, exacerbations, whatever you want to call them, can still occur at anytime without warning. Most of these flare ups are relatively mild and usually burn themselves out in a day or two. But now and you then you get one that comes on with a vengeance, often getting worse by the minute till it gets unbearable and maybe even life threatening. And that’s the problem with asthma or obstructive lung disease, its difficult to tell how bad an exacerbation might get, and its this uncertainty that seems to fuel a level of anxiety, at least for me. Adding to the stress, is the burden of trying to figure out what to do when a flare comes on.
The answer to those questions might seem obvious, but for those living with this condition on a daily basis, its not so simple. A million thoughts race through your mind when you start to flare and can’t breath. Things like, will this exacerbation rise to the level of requiring hospital type care, or is this something I can handle on my own at home, and how exactly do I make that determination? Do I go by past experiences or your gut feeling at the moment ?
Should I go to the ER before it gets too bad, or should I just pop a bunch of steroids and hunker down ? Am I over-reacting to the situation, am I under-reacting to it? If I go to the ER, will I end up being admitted to the hospital, or worse yet… to ICU? Will I be criticized for waiting too long to come in for treatment, will I even be taken seriously? Then there’s other stuff like, how the hell am I gonna get there? Im way too sick to drive, but maybe not sick enough or too embarrassed to call 911. And who’s gonna pay for all this? How are my loved one going to react? What are my doctors gonna think? Could this flare actually kill me? etc, etc. So many what if’s. No wonder you get anxious. Now obviously, if you’re someone like me who’s gone through this literally a hundred times, its easier to figure out. But for those that are new at the game, other than some loosely written instructions that you and your doctor came up with as part of your asthma action plan, there really are no hard fast or universal guidelines on when to seek medical care. Seriously, unless you keel over in public somewhere, you’re basically on your own in figuring out the correct course of action in getting your breathing under control.
So in finding ways to deal with the stress caused by these kinds of situations, including the emotional trauma caused by so many ICU stays, I was fortunate to hook up with a caring and compassionate Psychologist who treats people with chronic or life-threating illnesses. She uses cognitive behavioral therapies, including the practice of mindfulness. Mindfulness meditation is basically the practice of maintaining a state of heightened, but nonjudgmental awareness of one’s thoughts, emotions, or experiences on a moment-to-moment basis. In other words, living in the present moment. Its amazing just how caught up we are in our endless chatter of passing thoughts and distractions. Its as if we’re constantly listening or watching a movie about our own lives, instead of actually living them in the present moment. As one of the authors in the course Im taking says.. “We spend more time living virtually then in the real world.”
Mindfulness meditation practice can be very affective in reducing the anxiety triggered by various unpleasant sensations we might encounter. However, when it comes to conditions like asthma or COPD where the main symptom is dyspnea (breathlessness), it becomes a complex skill. It involves learning how to simultaneously become more aware of ones dyspnea, while at the same time detached from the negative emotions and sensations that arise from it. This is very hard for most people to do, including myself. For now, when I experience the more intense symptoms of breathlessness, I switch my body awareness or anchor, from my lungs (breathing) to another part of my body. So for the sake of this post, or until I master the skills mentioned above, Im talking about mindfulness meditation for the less severe, and less life threatening attacks.
As with pain, breathlessness and/or chest tightness are red-flags or warning signs that tell us something isn’t right. Its how we interpret and respond to them that can make a difference. By examining these warning signs and the thoughts that arise with a kind and gentle awareness, they become less the center of our attention and therefore less of a threat in perpetuating a cycle of anxiety. Your mind becomes less bogged down with the what-ifs, and with a clearer mind, you’re able to make better decisions in terms of addressing and fixing the problem medically.
Anyway, now in my 4th month of mindfulness meditation practice, though still unable to completely dull the sensation of overwhelming breathlessness when it arises, I’m beginning to change the way I think about my milder symptoms as they come and go throughout the day, and especially the internal dialog that accompanies them. Instead of reacting instinctively that those symptoms might get worse or continue for a long time, Im doing better at recognizing them for what they are….just symptoms. And whether they be super distressful or moderately tolerable, Im trying to experience and accept those unpleasant sensations with a non judgmental attitude and move on. With a clearer mind, I’m finding that I’m less hesitant to begin a medical regimen sooner, rather than waiting too long. Its no secret that I hate taking high- dose steroids and that they don’t always rescue me from a hospital stay, but I know that starting them earlier gives me at least a fighting chance. If I do end up in the hospital, I will continue to focus on mindfulness and take other steps such as diaphragmic breathing to help reduce the physical work of breathing. This will hopefully slow or halt the progression toward respiratory failure. I may not always be able to avoid hospitalizations, but Im determined to avoid future intubations if at all possible. There are just too many unforeseen complications.
At this point you might be thinking, if someone had the ability to think away their breathlessness, or whatever unpleasant symptoms they might be experiencing, no one would ever need emergency medical attention or treatment for ANY illness or condition. Wow, wouldn’t that be something. Well, even if you could somehow mentally block out your shortness of breath or lessen its effect on you, make no mistake, severe asthma is a very REAL and potentially lethal condition with a mind of its own. So along with mindfulness and stress reduction techniques, you still need to address your asthma medically, and with a clearer mind this should be a little easier to do. Will mindful awareness help in every asthma related situation? Probably not, but other than in those rare situations where a sudden severe attack is triggered by some sort of anaphylactic reaction, chances are you will benefit by being less anxious about the situation.
This is still a work in progress for me, and I wont really know how much its help or how good I am at it until the next big exacerbation. Which yes, will eventually happen no matter how mindful I am. But I can tell you that so far with my day to day symptoms, which wax and wane in intensity, Im already seeing a reduction in my stress levels brought on by them. And not just stress involving my health problems, but in other areas of my life as well. Learning and using the tools that mindfulness practice offers, has definitely helped me see things differently. I’ll never be totally asthma free, but if I can prevent just one intubation or lengthy ICU stint, its a win win for everyone. If you haven’t already, I urge you to check out the various mindfulness meditation therapy programs out there. I think it’s almost a requiremeny for living in todays busy world.
PS..As luck would have it, 2 days after completing the draft for this post, I started flaring again. I contacted my Pulmo, increased my meds and practiced mindfulness of my symptoms often. I held things together the best I could, but after 5 days and no significant breathing improvement, the best thing I could do was seek ER treatment. Once there, I was given more steroids , placed on cont Albuterol and Bipap to open my airways and stabilize my blood gasses. After less than 24 hours in the ICU, I started to improve and did not require intubation or further intervention. That same afternoon I felt well enough to go home, but agreed to stay another 24 hours for observation and monitoring. In total, I spent 45 hours in the hospital. A near record for me, and no Intubation!