Gambling on Life: Chronic pain and a social life

This post, like others that will follow it, is a continuation of my Gambling On Life series.

Earlier this week I was doing one of my monthly follow-ups with my rheumatologist (Hydoxychloroquine is out, we’re trying Chloroquine next before getting into lab-req meds) and filled out the standard form providing details on how I’m currently feeling, and how the past week has been for me overall.

This form covers a number of tasks/activities, listing your ability to complete them.

Many of them tend to be in the “with some difficulty”. Others are in the “with a lot of difficulty”.

Some are in the “fuck off, that’s impossible” category (OK, it doesn’t say that, but you get the point).

It makes me think about my past and how, as time progressed, even the simplest tasks became a challenge.. And that’s before I even realized something was really wrong.

When I was a kid, I started wanting to avoid certain physical activities because I just didn’t feel good doing them. I actually realized that I have such difficulty with writing things by hand (and having horrible handwriting) just because it’s painful to grip pens/pencils for any extended period, and I thought this was perfectly normal, even as a child.

As a 40 year old man suffering from chronic pain, however, it’s gotten.. Much worse.

I recently took a trip to finally meet a bunch of coworkers.

This involved a lot of things: Number one, I had to make sure I got the ground-floor bedroom of the AirBNB we were all staying in. I had to bring my own pillow. I took plenty of extra meds, and also made sure to bring snacks I knew that I could take my meds with. I had a spare cane (well, I always do - it’s in my EDC bag, which I’ll probably write about later). I also had to make sure I only stayed 2 nights: The longest I can go without solid sleep, because 90% of beds in hotels or B&Bs just aren’t good for my body.

And still, I felt like a burden. Folks wanted to get out and do things, go walking, and more, and I just had to say.. No.

On my best days I still have to plan for the failures of my body. If I go somewhere, will I be able to sit and relax? Will there be AC? As a neruodivergent person, will I be able to avoid loud noises and big crowds to prevent overstimulation or pain from sound sensitivity?

And, most importantly: Will I be able to get a ride home in a reasonable timeframe should I no longer be able to sustain social interaction?

It’s hard to function in social situations with chronic pain on the best of days, which makes planning for even a simple outing a chore.

Just getting dressed many days requires taking a breathe, for fuck’s sake.