Saturday, October 31, 2015

Internet Spoons

The Internet is a magical place, Tumblr even more so.  In this particular instance I'm refering to the magic of very specific communities that form around very specific experiences, opinions, or fandoms.  For some reason, based just on my own experience, Tumblr seems to be really really good at this.  The niche communities on Tumblr are varied and easy to find, and they have a lot to say.

So I've been reading a lot of stuff on Tumblr with the #spoonie tag.  Granulomatosis with Polyangitis is too niche a community, but general chronic illness (aka Spoonie) is very supportive and relatable. It's really nice to see a post and say "Yes! This is exactly!" or "Thank god I'm not the only one in the world who has to nap after taking a shower!"  There are a couple spoonie blogs that I'm following now that are run by really wise and supportive people.  It's great.

It can also be ... not great.  There are a lot of people in the spoonie community that have it so much worse than I ever will.  I have the privilege of knowing that my current state of not being able to do anything is temporary.  My disease will go in to remission and I will be able to live a mostly normal life.  There might be slightly more maintenance that I have to do (which I should have been doing all along, and which probably could have prevented reaching this point), but we all have to do a little more maintenance as we get older anyway.

I also don't have to deal with pain.  Not much anyway.  The junk in my nose gives me really bad sinus headaches that could almost be considered migraines.  But that doesn't happen every day.  There are lots of spoonies who spend every waking moment in constant pain.  All I have to deal with is fatigue, and not being able to breathe very well.

Reading about these experiences triggers many different reactions.  Sometimes it makes me appreciate the less-severity of my own situation; it could be worse, thank goodness it's not.

Sometimes it terrifies me to think about how much worse it could be.  This is something I faced when I was first diagnosed too.  Reading about GPA can be really scary because there are cases where things get really bad and treatments don't work and people are in very bad shape forever and it never gets better.  Those situations make me want to hide under the covers and knock on all the wood I can find because I could easily be one of those people.  I'm not.  But I have the disease that could put me there.

Sometimes I feel like I'm not really qualified to be a part of the chronic-illness community.  My situation could be so much worse, and I sometimes feel a little invalidated. I have a light at the end of my tunnel, and a clear path to get there.  Yes, it's going to take a lot of time and effort, possibly a surgery or two, but I will get there.  I will have my career.  I will have a social life again.  In a few months, or a year, or however long, I will be living my life mostly outside my condo (probably.  My condo is really nice though, so I might stay here a lot too).  My prognosis is positive enough that, after reading how others suffer, I sometimes don't feel like I have the right to feel bad about myself.

This can actually be kind of dangerous because it creates a mental state where I tend to minimize the signals my body is sending me.  I think "oh I'm not really that sick" and then I push myself and either over do it and crash really hard, or I'm disappointed when I don't get things done that I wanted to do.

My incredibly handsome fiancé Matt has actually been my saving grace when I lose myself in the #spoonie internet.  He reminds me that other people's experiences don't invalidate my own.  He also reminds me to be careful and not push myself too hard when I get it in my head that I am going to take on a gigantic to-do list.

Like anything else on the internet, the chronic-illness community can be helpful or harmful.  Everything needs to be taken with a grain or two of salt, and that's perfectly fine.  That's just sort of how these things work.

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