***** Warning…. there is going to be implied sarcasm… I’ll try to warn you *****
When I went to Pitt, one of my favorite classes was on Usability Engineering. We read The Design of Everyday Things (Don Norman) and learned how some things are designed incredibly well and some things are just not quite as usable as they might be with just a little tweaking.
Since I was diagnosed with RA, I’ve thought a lot about Usability Engineering and the design of a lot of things. Things like how horse brushes, scaled down, are easier to use than sexy people brushes because of the handles and how cup handles do or don’t fit stiff and achy hands.
More, I’ve looked at how I can use something for different purposes or adapt something that I use for multiple purposes. I hook elastic hair ties over the bathtub drain plug to help with pulling it out. I wrap rubber bands around keys and handles of things to make them easier to hold and use and less likely to slip out of my hand. I take my RA into account more times than I can count when opting for purchases based on how I think it will be to use whatever it is when my hands aren’t working right.
I think about how PLACES are usable to people. Bathroom doors, tiny stalls in the bathrooms, door knobs, silverware, curbs, airplane seats; there are all kinds of things that aren’t particularly usable when you have issues with your body.
I read a blog post this morning from someone I quite avidly follow. To be frank, when I grow up, I would really like to be as visible as she is and to have the impact that she does. But then maybe I just need to remember that I am exactly where I need to be. The post was very good and very apt and very right about most things, but (you KNEW there was a but coming, didn’t you?) there were parts I took exception to. The part that made me cringe was about how moving makes RA worse. There is a sentence in bold that caveats this saying moving makes bad RA worse, and that sentence is right. If you are in extreme pain and walking across the room makes you feel like there is ground glass in your veins, you probably don’t need to be walking 13 miles. You probably don’t need to be walking any further than to the bathroom and back. But the tone of the post makes it sound like no one other than those lucky few that only have RA lite not RA regular or RA high test should just suck it up and stay seated.
Frankly, I’m glad I’m one of those lucky few with the mildest of cases and that my RA only affects a few of my joints <<<sarcasm here>>> because as dumbed down as it is with MTX and have my crap, if it were more than the 30 that are now affected (three ‘inside’ toes on each foot where the toe and the foot meet… and every single one of my finger joints… which can make shaking hands, especially with a macho type bent on world domination a bit of a challenge) I would hate to think about what several or many would be. I’m glad that I only have moderate erosion of most of my long bones and all of my fingers. I’m damn glad that I only feel like a junky jonesing for a fix by week 3.75 post infusion when I nearly start counting the hours until I can get hooked up to the IV again to get my Orencia.
The trouble is, I know that… If you have seen one person with Aspergers, you have seen one person with Aspergers and that every single solitary person is different and unique in how they present and how they cope. I also know that, if you have met one person with RA, you have met ONE person with RA and that we, like Aspies, present differently, cope differently, deal differently. Do I know that I’m one of the lucky ones? HELL yes. Do I completely understand the feeling of wanting to lay down RIGHT where you are and let the traffic do its worst if it is in the middle of the street? Yup. When I hit my personal wall and my hips were SCREAMING with every single movement and non-movement and I was choking back sobs between mile 11 and 13 in my first and third Austin half (choking back sobs, not stopping the tears) was probably two of the three worst memories I have of flairs. SHOULD I have stopped? Probably. Did I? No. I’m stubborn and mule headed. Just ask my son.
The point is, you are your own unique RA impacted person. YOU need to know your body. You need to know when you are nearing your limits and you need to figure out how to live within them or use what you have to work with them.
I realize I’m old. I’m fifty, I’ll be fifty one in a few weeks. I’m supposed to be slowing down but I’ve decided not to and while I do take my RA into account, I don’t let it get into my head all the time. I get my writing done early in the morning if I want to write because it is when my body is the happiest. By 7 pm, I usually feel like I got run over by a 240 ton production truck from the mines. When I go shopping, I usually push the cart so I can use it as something to lean on. Sometimes I use it like a scooter and put one foot on it while I push with the other. This morning my fingers are bitchy (all of them and today should have started to be better) so I will find ways today to adjust.
I guess what I’m trying to say is… you know your body. You know what it can and can’t do in general, today, this week, this minute/second. Take everything (especially everything I say) with that in mind… with a grain of salt… or better yet with a HUGE cup of warm yummy beverage of your choice. It scares me because I remember when I was newly diagnosed, I went and hunted EVERY single thing I could find on RA and what it could/should/would mean to me. And half of what I read scared the crap out of me. If I had allowed the fear and the words to worm their way into my head, I would never have finished my Disney Half feeling solid and human and went on to prowl the parks the rest of the day… I would never have ventured back to the north east and realized that my hands hate hot and humid but they like cool and even cold way more… I would have missed the grateful smile from two wonderful children selling lemonade on their sidewalk for a quarter a glass (dirty hands picking the cups up off of the sidewalk, reaching in to pick out the flecks of grass, and pouring the lemonade and laughing when I rolled my eyes at how good it tasted).
In all things, to thine own self be true. Remember… a couple of rubber bands make glasses easier to hold and less apt to fall on the floor… a decent sized smart phone (phablet) is sometimes better than a tablet when a tablet is just to freaking heavy to work with (and it doubles as a camera AND a phone… who knew).
Today is going to be a coping day. I know it already. I have work for work that I HAVE to get done and my hands were already screaming well before dawn. Taking pictures in the cold helped for a while, but warming back up just made them ache again. I think it is time for Tiger Balm and napproxen. I think it is a coping day.
Love and Light