The hidden side of chronic illness (originally published 4 July 2021)


Most people who meet me for the first time have no idea of my health issues/status.  And should they find out, the most common reaction is "Wow!" or "You look so healthy!"

On the one hand, I think it's awesome that I can make CHF/LAM look this good.  On the other hand, it sometimes means that people automatically have expectations of me that I can't possibly meet.

On the low end of these encounters are the dirty looks I sometimes get when I use the handicapped parking spot.  Lately my right knee is acting up enough that I often use a cane when headed into the city, so this has become less of a problem.  But before that, my partner and I often got dirty looks as we got out of our car to walk into store or building.  I could tell people were wondering how either of us could possibly need that parking permit.

Four medications I'm on interfere with concentration/alertness, so I have to be aware of this and plan what I do accordingly.  I don't drive much anymore without a backup driver with me, and usually only short distances at certain times of day, just to be safe.  

I've become an avid gamer over the past few years, as many times that community has been my lifeline to the outside world.  I play Pokemon Go and have been able to join in with the larger community by way of remote raiding passes.  Often that means having another app open (Discord - used to arrange raids, etc.) as well as the gaming screen.  I love raiding!  It makes me feel capable and more like myself, until it doesn't.

Today, I was trying to raid on my phone, meaning I had to keep switching back and forth between apps on the same device.   Sounds simple, right? In doing so, I missed a critical message and ended up screwing up the raiding party's last chance in one particular location by my tardiness.  I was surprised at how badly I felt about that.  I know it's just a game, but it was a reminder to me that I am not capable of what I once was; at least not to the level I was before.  Multi-tasking is more stressful and more fraught with issues for me now than ever before.

Like most people with chronic illness, I try to compensate.  With my gaming I now have a tablet and a phone, so I can have both screens open (one for each application) at the same time.  That helps, but I still miss things sometimes.

I keep lists and reminders for myself.  I try to set goals based on what I can reasonably do in a day.  But then there are days when even after a good night's rest, I feel emotionally fragile, ready to cry at the drop of a hat.  Even the wrong picture on Facebook can set off a stream of tears.

The only reason I feel as capable as I do most days is because my family has become adept at normalizing what I can still do.  They've been wonderful about it ever since I first came home from the hospital after my SCAD.  The rhythm of our day is very much determined by when I fell asleep the night before and how much rest I was able to get, as much as it is around my chronic issues. While I've come a long way back since that life threatening event  2018, it's easy for me to forget sometimes how much my "normal" has changed.

But I'm still he, and as my family likes to remind me, that really is the most important thing.  And I can still find joy and contentment in most of my days, despite the drawbacks of chronic illness.

And that my friends, is what keeps me going:  the little moments in each day that make me smile, give me a warm feeling in my chest, or make me laugh out loud.

Hope you're having a lovely weekend.


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