Getting by with Effort, Blinders Attached

For a while there, I considered, with the encouragement of others, to write a book about my life, my condition, and surviving it.  However, other than some phantom feelings, I couldn’t for the life of me remember much of the details of how I felt through different symptoms and sicknesses.  I’m sure deep deep down, the smarter part of my conscious was protecting me and didn’t let those nightmarish days come back to me.  I’m thankful for that, in a way.

But if any good can come of my surviving life rather than simply living it, it’s that my experiences may help others journeying down the same path.  So, as you’ve seen here, I’ve been trying to document more on this blog the experiences I’m having now.  This war is far from over, so giving others a roadmap starting here is better than no map!  Also, I may go through conditions I’ve gone through in the past and be reminded of things I can share, like today:

Breathing has needed much effort the last week or so.  Sunday night was my last dose of 25mg Cyclosporin, but 25mg didn’t feel like it did much compared to the 125mg/100mg I was on just 4 weeks ago.  Others can clearly see the thick rashes on my face, and I can feel it itch and cracks of broken skin underneath my clothes.

Yet what most observers don’t comprehend about conditions like mine is the internal reactions are just as bad, or sometimes worse, than what you see on my skin.  It’s just those are the most obvious.  Without enough Cyclosporin holding things back, my gastrointestinal tract as well as my air passageways (which are connected) are reacting to things I eat and anything I smell.  Even with my diet limited to beef, potatoes, and Elecare, the insides of my stomach feels swollen and food just sits in there.  I hardly feel like eating more than 1 meal a day.  When I do try to eat a 2nd meal, I just don’t feel like I have anywhere to put the food.

So as I feel my stomach fighting off the beef and potatoes, as well as whatever’s in the air, there’s a lot of mucus-y phlegm clogging up my throat and sinuses.  Just keeps filling the already-swollen passageways in my throat, nose, and mouth like Yellowstone.  I find myself back in the exercise rhythm of pushing to get breath out to exhale, trying like taking deep breaths just to get a some bit of air.  I’ve done this for most of my life, so it’s comes naturally to me.  Yet with the last few years of freedom, now I do notice how different this is from “normal” breathing that affords me extra attention to look around, be involved with other’s conversations, etc.  I guess the best way I can explain my current labored breathing is like how hard you have to work at a checkup when the doctor tells you to take big big breaths in and do complete exhales.  Then, keep that up 24/7, which gets you into a rhythmic “zone” as some runners, cyclists, or rowers may get into.

So, I do feel like I’m missing a lot more of what goes on in the environment around me as I have these blinders on to focus on my breathing, controlling my throat and ab muscles for swallowing the gunky mucus, and getting from once point to another.  It also makes it VERY hard to talk.  The story I always tell is when I was barely 4 yrs old, or probably younger, I would have severe asthma attacks just from talking a little loud, laughing, or running.  So, people who meet me in person now see me as quiet, calm, and not very talkative (yet online I have a lot to say!)  The Jeffrey you meet in person is just the result of a lifetime of conditioning of NEEDING to be quiet, calm, and of few words.  Any other more energetic behavior, if I could even muster it, resulted in unwanted suffering, so it was best not to.

How I feel right now is 99.9% better than how I felt just 5 yrs ago.  There were a lot more other conditions and symptoms, among other things, that required my attention just to get from moment to moment, like itching in more places than I had hands to scratch, but that’s another skill in itself!

Just simply sharing my experiences here.  Not looking for sympathy.  But I do hope it helps you to see what you observe or may know about someone is probably just a tiny part of why and how they are.  Also, how they are may not be who they are inside (or how they see and know themselves).


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