Feeling like shit right now? Is your asthma, COPD or other breathing disorder flaring up or bothering you more than usual? Were you searching the web for asthma related stuff as a way to cope with your own crappy breathing? Is that how you reached my blog?
Well I can tell you that you’re not alone. I feel your pain, or should I say…I feel your shortness of breath!
Breathlessness in any shape or form sucks. No matter how mild or severe it is, it’s pure torture, plain and simple. And right at this very moment there are probably millions of people just like you who are suffering in the same way.
Asthma is more than just about the occasional wheezing or having to take medications and avoiding triggers, it’s a hardcore disease that causes a lot of real suffering too. Ever see a child struggling to breath with asthma? It’s gut wrenching. But asthma makes breathing difficult at any age. Not just during the severe attacks, but during the milder ones as well.
People assume that if you have asthma and your lungs start getting tight, that you just take a couple hits off your rescue inhaler and the shortness of breath will instantly go away. The reality is that when you’re flaring the meds don’t always cut it. They might take a long time to kick in and sometimes they don’t work at all. If they worked all the time, no one would ever really suffer and we wouldn’t be here talking about it.
The experience of breathlessness (dyspnea) is totally subjective. Just like pain, there’s no way to actually measure it. O2 sats and pulmonary function tests don’t measure breathlessness. We all perceive it differently. It’s a physical discomfort that can only be described and quantified by the person experiencing it, and by the impact it has on that persons life. And while Im sure most lung healthy people (medical professionals included) probably have some idea of what it might feel like to be “tight”, or short of breath or to gasp for air, they probably don’t realize that breathlessness can be agonizing. Mounting anxiety is only part of the snowball effect dyspnea brings. When you’re breathless, it changes your perception about everything. I dont know about you, but when Im short of breath it puts me in a foul mood, it makes me angry, it make me depressed, it makes me feel alone and isolated. Feels like no one understands the nightmare Im living, because after all, it’s only asthma, how bad could it be?
Breathlessness is not something that you can really escape from either. Its not something you can sleep off. In fact, it’s almost impossible to sleep when you can’t breathe, unless you’re at the point of clinical respiratory failure, in which case you could die. About the only way Ive found to tolerate these breathless bouts is to keep my mind focused on searching ways to improve it. This could mean taking more asthma medications or taking medication that trick my brain into thinking Im not so short of breath (anti-anxiety and opiates medications). It could mean trying to control how I perceive my symptoms..ie trying to relax (yeah, right). It usually means distracting myself by searching the web for others experiencing the same thing. And course blogging about it. I think when you’ve lived with this disease for a long time you often forget that it should not be hard to breath. It shouldn’t be a workout or a chore. It should be something you’re not even aware of. It should not be on your mind at all.
So again, to those of you who are suffering at this very moment, you’re not alone in your despair. I truly understand what you’re going through. I know what it feels like to slowly suffocate. I feel for you and I totally get it! In fact, I wrote this post in my head while on a 22-hour stint on Bipap and continuous nebs in the hospital ER last week. I stared at the wall and the door all night long like Ive done a hundred times before, thinking to myself…. who thinks about their breathing nonstop for 22 hours waiting for signs that it is starting to get easier.
Yeah, that’s what asthma is, that’s what asthma does. I know it’s difficult to think that you’ll ever return to normal breathing, but don’t give into the dread. This hell you’re going through right now will eventually ease up as the flare subsides. It might take hours, might take days or even weeks, but you’re tough and you’ll get through it, I have faith in you. Your reward will hopefully be a string of incredibly easy breathing days, the ones you don’t have to think about. Those are the ones that keep us going.
In the midst if a particularly bad episode. Feeling like I’m never going to breathe again.
Day 2 from hospital and felt this morning like I was not going to make it. I want to cry but if I start crying I will end up back in the hospital. Thank you. I will keep pushing on. One breath at a time.
I wrote that earlier post 6 months ago. Just wanted to let you know your email following really encouraged. I haven’t had an attack since then. My meds were changed and I am on Symbicort twice a day. It has really changed my life.
Thank you for posting. I really really appreciate it.
Im happy you’re feeling better 🙂
Thanks – 5 days back from hospital and reading this is exactly what I needed to help me gather strength for this recovery!
Thank you. I am still getting used to the asthma (adult-onset) and the bad days are really bad. At 80%, it feels like it *should* be red. I can’t do anything at all. Japan doesn’t have action plans, so most of the time I just keep thinking “what should I do” and the only answer is “I don’t know” which makes it worse. Think I will try to trick my dr into helping me write up one of those action plans so I can look at it and finally answer my own questions.
Thank you for sharing your life and struggles with this disease. I don’t have severe asthma, I have not been incubated, hospitalized a few times IV steroids. Right now I have an exacerbation, started as a cold. Went to doc was put on 60 mg taper for prednisone. After 4 days the I was down to peaks of 49% normal..going up to 56 after nebulizer. Went back to doc she put me back on 50 of pred. Felt better the second day, but now chest feels full feels like I can’t get enough air I am at 60% an hour after nebbing oxygen is at 92% I am feeling emotional crazy from prednisone and not sleeping for 4 days.
I can’t walk around house without going out of breath. I have that heavy chest feeling should I get checked? They will probably just send me home. Should I just wait?… maybe tomorrow will be better, but I have to make it through tonight first. I really hate this.
Hello, Sorry to hear that you’re struggling. By the description of your symptoms, sounds like you’re experiencing what they call “air trapping”. AT occurs when air is able to get into your airways, but is difficult to expel. This gives you the sense that your chest feels heavy, making it difficult to breath. AT usually happens because of the inflammation in your airways. When you take high dose steroids it reduces this inflammation making it easier to breath, but when you start tapering down the inflammation starts to ramp up again. That’s why its so tricky to wean asthmatics off of prednisone. Its a balancing act. If your symptoms get worse when you try to reduce your dose, it’s probably best to slow the taper down. As far as seeking emergency medical care, I obviously can’t give you specific medical advise, but if you feel like your breathing is getting worse you should definitely consider getting checked out. One other thing to consider, steroids can really mess with your emotions and cause major anxiety ( which is btw is completely normal when you can’t breath). Any type of anxiety can make your breath feel worse. Again, if you’re not improving or are feeling worse despite being on lots steroids, you should at least contact your contact your Dr or go the ER ( dont go to an urgent care ). Try not to worry about the medical staff dismissing the severity of your symptoms. Asthmatics dont usually have horrible peak flows or O2 sats when they’re flaring unless they are critically ill. If its a reputable facility they will know this and you should be able to get the objective care you need.
Hang in there.
Steve
Steve