When I was diagnosed with IPF around August 2016, I of course immediately Googled around and looked at worst-case-scenarios and soon after was ready to order an urn for my ashes that very week. Really. I found a pretty cool one too.
I had, of course, jumped the gun by years. Understandably, though, I was a bit excitable at the time.
I had biopsy surgery around November 2016. It was a big deal with lots of tubes and wires and such. I got a lot of attention from nurses though. That part was OK.
Recovery was pretty horrible. Being a guy that is pretty hard on himself in life, careless if you will, I have been under the knife a few times. But never have I experienced such a horrible recovery as this one – not even after a double bypass. No, not this time. I was coughing all the time and often coughing up large amounts of mucous , making horrible noises and occasionally vomiting as well. Not a pretty picture, sorry. This sent on for a couple of weeks if I recall correctly.
But of the last few months, in spite of having to drag around a large oxygen tank when I go out, I feel pretty good. Well, periodic episodes of fatigue have been occurring. I thought it was just laziness. I don’t think so now. Actually I read another IPFer’s post somewhere that referred to this feeling as a malaise. Good word.
In spite of that, I am driving around with a disabled parking plaque and the oxygen tank and making a few visits out of the house, and doing a bit of writing and, once in a while, vacuuming the living room. We even have a housekeeper come in a few times a month. Well la de da, ain’t we living fanciful now?
So yeah, I feel like I should feel worse considering the parking permit and sitting around a lot and all. Watching documentaries and reading all manner of stuff, and scribbling thoughts down here and there and saving articles without any reason to any more. So, and don’t tell anybody, I actually feel kind of guilty. You know, “guilt – the gift that keeps on giving”. I don’t know if people experience that feeling any more. Psychologists refer to the notion of shame, but that is a bit overboard in my case. Shame is longer lasting. Maybe lasting a lifetime. Guilt can just be something to mess you up in the short haul, even if over and over and over.
Anyway, what am I thinking? That I would feel better if I felt worse? It is vaguely like having all your symptoms of some frightening ailment completely disappear on the day you finally get to see your doctor. Try to untangle that one if you can.
Maybe feeling too good right now is OK then. I mean, things could be very different tomorrow couldn’t they?