Friday, April 27, 2012

5 Challenges and 5 Small Victories

The five most challenging things about writing about my illness... Hmm...

I'd have to say actually living through the stuff I talk about it pretty terrible. Some days, it's not so bad. But then there are others I just look back on and I have no clue how I actually made it through that day (week/month/whatever).

It can be really hard to put how I feel into words too - physically and emotionally. The pains of dealing with conditions in the autoimmune arthritis family are just... I can't even accurately describe it. And that's the problem. I can say "whoa, did y'all see that Mac truck?" but very few people living know what that feels like, and to be honest I'm not one of them. I, thankfully, have never been run over by a semi. I guess though a good thing about me dealing with Still's for so long is that I've had a long time with an interesting imagination to come up with ways to describe things. Apparently, from what I hear from you guys, they're pretty accurate sometimes so that's cool.

I hate not being able to walk around. Part of it is the actual deal of hating hobbling around like a fat mama penguin full of fish coming to relieve the daddy penguins after the harsh Antarctic winter. Part of it is feeling like the damn tin woman. I have a heart, I really don't need to follow the yellow brick road to get one (why are the bricks yellow anyway??). But part of it too is how people look at and treat me when that happens. I look 'normal' for the most part, so if I use a scooter in the store I'm a jerk. If I lean on a cart, I'm a weirdo. If I use a cane, I'm automatically a cripple - and probably because of my weight right?

But you know, I've dealt with this affecting my legs for eighteen and a half years now. Shit, it's been that long? Ugh. Anyway, like I was saying, I'm used to that-ish? I'm not used to it affecting my back and my hands and making it nearly impossible for me to do things that I would normally do, regardless of how my legs feel. Typing isn't going to work today? Okay, so then not only can I not work but I can't blog and can't be all social media-y like normal. Let's not even talk about going to the bathroom when nothing on your body wants to move and grip. LAME.

And then there's the emotional side effects. The kinds of things that make me a good blogger make me really, really awkward a lot of the rest of the time. I don't spend as much time with my friends, because they all want to go out clubbing or to restaurants I can't eat anything in because of gluten. Or, you know, maybe physically I just can't really do anything that day. That's hard to deal with, but even harder to share with some people. I don't want to be the killjoy. I feel like no one understands me sometimes, even with an amazingly patient boyfriend and so many ill friends who clearly understand. There's an element of loneliness and despair to being ill that cannot be explained unless you've lived it.

BUT! There are good things too!

I've made so many friends through being ill. We live in a lot of different places, so even without our conditions getting together isn't a real possibility for now for most people. But we get together for a few minutes everyday to share our lives with one another. And when I do feel like no one understands, I am reminded that they do - and that so many people have it worse than me.

I've talked in the past about Jordan, the daughter of one of my friends. On tough days for me, she posts something online or her mom will and it just reminds me of why I blog. I remember being that little girl, back when the internet wasn't really a good research tool for autoimmune arthritis and talking with people you didn't know in real life was a huge no-no. I remember feeling so lonely, because no one understood and no one knew what I was going through. I don't want that for Jordan, and thankfully she won't have that. She is just one of the kids facing arthritis that helps keep me going when I'm tired and just want to give up on raising awareness. Even if I don't feel like I'm worth a cure sometimes, SHE is.

Those days when I can go bowling with family, deep clean the apartment, or open a jar unaided - those kinds of things are amazing.

Working on projects like the upcoming World Autoimmune Arthritis Day presentation I'm doing gets me reading and researching, and those kinds of things really help me to grow emotionally. I definitely need it.

I think the best kinds of victories though are when I can do normal people things with my boyfriend. Those little glimpses into a normal life are things that I live for, and I wouldn't want to share them with anyone else but him :)

1 comment:

  1. Hi, KirBir,
    What a great post: honest, informative, uplifting and brave. Having had RA for about 25 years now, I totally empathize with you and understand how isolating (physically and mentally!) this disease can be. The Internet and social media has opened the world up for me--I have never known anyone else in my day-to-day life whh also has RA, so it is definitely a blessing. I've learned so much about the disease and I've made some very dear friends who understand and empathize with ME.

    You're doing some great work. Sending warmth, patience and a cupful of joy your way. :o)

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