You know that feeling you get after youve survived a really bad asthma or COPD exacerbation? One that probably put you in the hospital for several days?  Where it took weeks of painstaking recovery and a slow prednisone taper, but then you finally started feeling pretty good again? You felt victorious that you beat it and you’re feeling like your old self again?  

Nope, that’s not the feeling I’m talking about.

All is good again, until one day, whether it be 2 weeks or 6 months down the road, you start noticing that your breathing seems mildly labored again. It only bothers you a little bit, so you’ll just keep an eye on it, increase your meds as needed and hope that will do the trick? Nope, that not the feeling Im talking about either.

You’re now several hours into this new uncomfortable breathing pattern and your rescue inhaler isn’t really cutting it. You check your peak flows to see if they might reflect how you’re feeling. They’re a little lower, but actually not too bad, so you starting questioning yourself… What the heck is going on?
 
Nope, that’s not the feeling I’m talking about either.

You’re now into a full day of this nagging breathlessness. You feel uneasy and constantly tight, but not overly so. You think to yourself, “Something’s not right, am I getting sick again?

Close, but still not the”feeling” I’m talking about.

Youve now been dealing with this for a couple of days you’re getting no reprieve from ANY of your meds. Your peak flows have dropped into your yellow zone. Your O2 sats are OK, but it seems like everything you do is making you short of breath.

Nope, not it.

Then it finally hits you like a punch to the gut…… you’re flaring again! You thought maybe you got a lucky, but you didn’t. You’ve just been out-smarted by this disease…again. Your exacerbations usually come on really fast with an obvious trigger, but this time it tricked you and it came on slowly without a known cause. You say to yourself, “Why is this happening again?, I just went through this hell and have done my time. Is my life going to be turned upside down again? Am I going to end up in the hospital again? What have I done to deserve all this?

THAT’S THE FEELING I’m TALKING ABOUT!!!

God I hate that feeling more than anything in the world. It’s got to be the most depressing, defeating, stomach churning feeling there is. A feeling of impending doom. Like a dark shadow coming over you. How naive you were to think that you would never have an attack as bad as the last one, or convince yourself that youde never have to take another steroid, take another neb treatment, or have another blood gas drawn. When will you learn.

You’re on heighten alert now and getting more anxious by the minute. If you weren’t working really hard to breath before, you certainly are now. You begin following your asthma action plan, because that’s what you’re supposed to do. You’ve contacted your doctors, maxed out your meds, but still you’re huffing and puffing. You start cancelling plans and notifying friends and family just in case.

Then the exhaustive mind game begins. How bad is this going to get? How long should I tough it out before going to the Emergency Room? Should I go now before this flare gets worse?  Am I a wimp if I go in too early?  Will people take me seriously if my sats are above 90%? Should I stay home, self- treat the best I can and just hope that things improve? If I go to the hospital will I end up in the ICU, or worse….on a ventilator? What are my odds of me actually dying from this F’ing disease?

I don’t know about you, but this is the mental anguish I go through, or should I say…. put myself through, every time I my asthma flares and I get sick. I’m pretty sure I’m not alone.

There’s more to asthma than just fighting to breath. “THAT FEELING” is just one, of many aspects of living with severe asthma that most people are probably not aware of.

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4 thoughts on “You know that feeling?

  1. I’m right there with you man! I liked your artistic style in this post mostly because I can relate to most of those ideas as well. I’ve never ended on a ventilator but been in the ICU a time or two. My most passionate despise of the ICU and, well, hospital trips is dealing with my meds that they never have all of. I bring my own and then fight with them on taking them.

    Thanks for sharing your story as usual Stephen!

    1. Hi Stephen,

      Thanks for sharing this…
      I know this feeling all a little too well… after a ‘pretty okay’ spring (and a continuous struggle of trying to get of my now way too high prednisolone tablets… grr), i was almost convinced that I can go without anything (even though my family did not really agree;-)). And here i am again.. find myself awake at nights trying to breathe… High up all the medication and still knowing I am nowhere near where I should be.

      And then there’s still always the selfmanagement and self doubt part.

      Due to Corona having professional contact is getting harder now. But my nurse calls me every other day but wants to keep me out of hospital for as long as she can atm… problem now is they don’t want me to nebulize even extra at home now, but don’t nebulize at all in hospital due to Corona (????). O2 is mwah but okay-ish. but can stay like that untill the real drama starts.

      I was wondering: what do you do that helps? When you have this selfdoubt? Of going in or not etc?
      I find myself in the same position a lot… or is it something that happens to you and that you’re just ‘aware’ of?

      Thanks again for sharing!

      Warm greetings,
      Anneroos

      1. Hi. Sorry to hear about you’re asthma is acting up. ( Mine is too actually). Im guessing youre from the UK?
        Medical care and treatment for asthma is so much different here in the US. Most chronic or severe asthmatics have home nebulizers and are encouraged to use them before going to the hospital. As far as knowing when to go in, I usually go with my gut feeling. If Ive been sick for more then a couple days and the steroids and nebs arent working , I bite the bullet and go to the ER. Hospitals here are much different as well. Most asthmatics are rarely in the hospital for more than a week, even if they required a ventilator or intensive care. Many of my UK friends are sometimes in the hospital for a 2-3 weeks! As far as neb treatments in the hospital during Covid, the hospital I go to has special negative pressures rooms where they can give continuous albuterol nebs without fear of spreading the particles. Anyway, I hope you feel better soon. Thank you for reading my stuff Xx

  2. Hi Mark, I had a feeling this might post might resonate with other severe asthmatics. I cant believe you have to take your own medications with you to the hospital. That’s nuts. It must add to the stress of being there. Well, at least you don’t have to worry about 6 figure hospital bills ….lol

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