Given the hand I was dealt early in life, I think I’ve done a pretty good job of adapting. And despite the challenges I have faced because of this disease, not much slows me down. I can still function pretty normal most of the time, continue to have a fairly good quality of life, and let’s not forget the 11 full marathons I’ve completed with very limited lung function.
But there is one area of my life that I haven’t been able to conquer, and that’s obtaining a good night’s sleep. If I had just one wish, other than a cure for this disease, of course, it would be to do just that: get a good night’s sleep! A great night’s sleep would be even better, but hey, I’d settle for just good. I don’t think I’ve had more than a handful of them in more than 20 years.

Assuming I’m not in the middle of a flare, most of my days actually start out pretty good, with my best breathing occurring during the late morning hours. That goodness, however, rarely extends past the late afternoon. Generally, as the day progresses, so does my breathlessness. And if I snack too much or eat a lot for dinner,which for me is not a lot,the bloating that usually results only adds to that discomfort. By early evening, my chest tightness and/or air-trapping usually escalate to the point where I have to increase the frequency of my neb treatments to get enough relief. That’s just the way my days go, with my lungs the way they are, and to some degree, I’ve learned to live with it.
Ah, but then there’s bedtime. Where most people look forward to hitting the sack after a long day, I don’t. Sometimes I dread just thinking about it. Forget about escaping from the stresses of the day that a good night’s sleep can provide. For me, bedtime is mostly just a matter of getting through the night as quickly as possible. My main concern is whether I will get enough rest to function the next day or if I will be even more fatigued.

Unless I’m dealing with the effects of prednisone-induced insomnia (aka pred-somnia), which most asthmatics have experienced at one time or another, I usually have no problem at all falling asleep. In fact, by the time I hit the sheets, I was usually so tired from the work of breathing all day that I conked out from pure exhaustion. It’s the staying asleep part that eludes me. I’m lucky if I stay asleep for more than an hour or two at a time. The reason being that it’s difficult to stay asleep when your airways are constantly closing up. Simply put, it’s difficult to sleep when you can’t breathe.

To give you a better idea of what my nights are like, let me set the bedtime scene for you: Once I get situated and propped up in bed (I have an electric adjustable bed), I’ll take one last neb treatment, turn off the lights, and usually fall quickly asleep. But, within an hour or two of nodding off, my lungs will begin to tighten up again, my breathing will become more uncomfortable, and I will wake up gasping for air. Because this happens multiple times per night and I do not want to wake up completely for a breathing treatment, I will sometimes lay there in a semi-conscientious state, feeling myself gradually suffocating and hoping that the feeling will pass on its own, but of course it never does. Eventually, I have to give in to my breathlessness and take a neb treatment. On the rare nights where I am able to reach a deep level of sleep, my labored breathing will sometimes work its way into my dreams. Nothing like waking up from a nightmare unable to breathe—literally.

Just like during the day, when my lungs act up during the night, I have to use my inhaler and/or take a neb treatment. And just like with my daytime regimen, over the years I have developed a nighttime routine as well. When I wake up short of breath,I have both my inhaler and my nebulizer strategically placed at arm’s length so that I can reach them in the dark without moving around too much or getting out of bed. I’ll try the inhaler first to see if that will get me over the hump, but it rarely does. Most of the time, I go right to my neb. Instead of taking a full dose, however, I’ll only nebulize about half. This usually provides enough bronchodilation to quell my breathlessness and reduces the amount of time I need to stay awake, making it easier to fall asleep again. I’m so good at this technique that I can practically do it in my sleep. (Haha, get it?). Unfortunately, a couple hours later, the cycle repeats, and I’ll need another treatment. Only this time, I’m usually unable to fall back asleep completely.

Regardless of how the night goes, by 4 or 5 a.m., especially since my neck surgery, my shoulders are usually so sore from shrugging them all night long or from tossing and turning that I’ll just get up and start my day. Finally, by 6 a.m., when all the pills and inhaled medications I’ve taken kick in, I’ll start to feel pretty good again. If all goes well, I have about an 8- to 10-hour window of decent breathing in which to get household stuff done, go to medical appointments if I have any, do my daily fitness walks, or whatever else might be on the schedule for that day.

I’m thankful that I usually have this many “good” breathing hours, but it would sure be nice if I could experience them without being sleep deprived. I won’t bore you with all the negative things that sleep deprivation can cause, but trust me, there are lots.

Now you might be thinking, How about Bipap? Wouldn’t that help? Actually, my pulmonologist thought the same thing at first. Just like with sleep apnea, the belief is that if you stent the airways open, there’s less opportunity for them to spasm or close up. It sounds good in theory, but after a 3-month trial of Bipap (actually Bi-Level), there was no significant improvement; I was still waking up short of breath every couple of hours. Convinced that Bipap should have helped, I agreed to do a third sleep study and consult with a sleep specialist. After analyzing the results of that test, the specialist agreed that, in addition to intermittent bronchospasm, I also tend to trap a lot of air. So while the use of positive pressure therapy (bipap) helps keep the airways open, it can also add to the air trapping. That said, and the fact that my breathing seems to be getting worse at night since trying Bipap 4 years ago, I might give it another shot.

They’ve also recommended various medications to basically knock me out and keep me out. While that sometimes helps when I have insomnia issues, there’s also the fear that using medications just to keep me asleep could also knock out my respiratory drive. Unless you’re connected to a bipap machine or a ventilator, inducing sleep chemically is a little too risky. To alleviate those kinds of problems, they’ve gone as far as recommending I have a tracheostomy put in. As I have written about before, that last option is a bit too much for me. Id rather deal with my current sleep issues, than the side effects of living with a permanent hole in my neck.

I hope I’m not sounding too whinny about my sleep issues. I know people deal with all kinds of health issues, I’m just trying to raise awareness that severe asthma, like many lung conditions, doesn’t just affect breathing; it has an impact on almost every aspect of a person’s life. And it’s usually in ways that most people either wouldn’t think of or would probably take for granted, like sleep.

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3 thoughts on “Sleep, what the heck is that?

  1. Mark McGinnis says:

    Good post Stephen! Yes, I was wondering about Bipap as you wrote too. I also have this love hate relationship with Bipap because of air-trapping. We have found a good balance though to appease both issues fortunately. My weight issue in my neck from daily pred is much greater an issue than for you I think.

    I keep remembering something you’ve said that has kept me working out for 4 weeks straight now, so thank you. You said, “So if you’re waiting for your breathing to improve to the point where you think you can better tolerate exercise, chances are you’ll never even start. The cruel irony with lung disease is that if you dont exercise, your breathlessness will only get worse.”

    Bless you man.

    1. Hi Mark, Im sorry to hear about your recent hospitalizations, though I do get a kick out of your culinary reports…lol Like you, Ive tried Bipap and actually tolerate it pretty well with a full face mask ( dont like the nasal pillows). But here in the US most insurance companies, for compliance reasons, monitor and record your sleep habits and Bipap use. If you miss more than one night per week, they wont pay for the Bipap machine. I didnt like the idea of being monitored like that. That, plus after 3 months of use, I saw no improvement of my night time symptoms. I sympathize with people who have to deal with a lot of weight gain from steroids. Fortunately, my weight rarely exceeds 135 lbs ( 9.5 stone?) , though even the slightest weight gain makes it more difficult for me to breath.

      Hope youre in a good breathing pattern at the moment. Xx

  2. Nekona says:

    UGH! I’m not a severe asthmatic but when it hits me oh boy do I ever feel you in it making its way into dreams. Having a nightmare about being unable to breathe then waking up to it is horrible. No relief from an attack even in the subconscious!

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