Tell me if I’m wrong, but I truly feel like RA is an
extremely misunderstood condition. One
day you’re feeling fine and have no problems walking a mile in windy
conditions. Then the next day, you’re
stiff, sore, and maybe even bruised, probably all resulting from that walk that
you did yesterday because you felt so good.
I have often wondered why even my hands and elbows hurt the day after a
lot of walking. They’re on the opposite
end of the body than your feet and knees that I would assume would take most of
the effort. Well, thanks to my RA, every
joint in my body is affected any kind of physical activity. So, at times, even I don’t get RA. But it is much more often to have someone
else who doesn’t get RA.
Here’s a story for you - My husband and I were getting ready
to go on a 10-day trip where we were going to do a bunch of camping. Our most reliable vehicle was a Mitsubishi
Eclipse that just didn’t have a lot of room, and we had a lot of stuff to
take. My husband was talking on the
phone to someone else who was coming with us (in separate vehicles, thank
goodness) and telling her about how packed our car was.
 |
| Oh yeah, and it broke down the first day of our trip. |
A little background - My husband and his family and friends
love to go backpacking where they take minimal supplies that they can pack in a
bag that sits on their backs, and then hike around and camp and have a great
time with very few essentials. They need
food, clothes, sleeping bags, mats, water, first aid, tools… lots of things
that all need to fit in their packs and be light enough to carry for extended
periods of time. Some sleep in hammocks
that get tied between two trees, some sleep in their sleeping bags directly on
the ground, and some have tiny, thin, air “mattresses” that give minimum support
and can deflate and roll up tight.
Sounds like a blast, but it’s just not for me. I need lots of big fluffy pillows to put
between my knees and to hug on and support my shoulders. Not to mention a soft mattress that my hips
can sink into. I’m glad people have fun
backpacking and living off of minimal products, it’s just not conducive to my
physical condition.
Anyways, my husband started listing a lot of things that we
were trying to pack into our car: sleeping bags, pillows, big air mattress,
bags of clothes, toiletries, food, outdoor cooking supplies, coolers… The list
was going on and on. The person he was
telling this to said, “Well, why don’t you leave the big air mattress?”
My husband said, “Riley can’t sleep on the ground.”
As if she didn’t even hear what he just said, she said,
“Yeah, just take your backpacking mats.”
Again, my husband said, “Uh, Riley can’t sleep on the
ground.” I was standing there listening
to the conversation and it was as if the other person completely forgot about
me and my high maintenance, excessive needs for a simple (10-day) camping trip. Don’t worry, that wasn’t my first nor my last
encounter with that particular person forgetting about me… There’s underlying
frustrations here too.
Moving on. That’s
just one example of why it’s frustrating when someone just doesn’t get it. Yes, any normal, non-high maintenance person
may just pack a thin mat to sleep on because his/her body can handle being on a
firm surface. It won’t work for me.
Then there’s the rare occasion when someone actually gets
it!!!
One day, I was talking to a little 10 year old boy that I
knew pretty well, and he had just returned from playing at the park. He was explaining how much fun he had and
what playground equipment he played on, and he said to me, “You know, Riley, if
you could walk good, you could have fun at the park too. Well, no, there are things you could do that
you don’t have to walk for. Like swing,
and, umm….” Long pause, and then his
eyes got huge and his smile extended to his ears and he said, “Tire swing!” I had a good chuckle at that. He is someone who gets it.
There once was a time that I could do other things at the
park besides the swing and tire swing. I
could have easily gone backpacking and slept on a tiny mat with no issues
whatsoever. But as time has gone on,
those possibilities are limited. No,
they are gone.
A bit of love from The Velveteen Rabbit by Margery Williams:
'It doesn't happen all at once,' said the Skin Horse. 'You become. It
takes a long time. That's why it doesn't happen often to people who
break easily, or have sharp edges, or who have to be carefully kept.
Generally, by the time you are Real, most of your hair has been loved
off, and your eyes drop out and you get loose in the joints and very
shabby. But these things don't matter at all, because once you are Real
you can't be ugly, except to people who don't understand.”
Lots of thanks to those of you out there who understand. For those of you who don’t, may I suggest
that you stop it! Get a clue! Start thinking of somebody other than
yourself!
I know, that was harsh.
But seriously, be aware of those around you and the pain they may or may
not be in. I realize that just because I’m
in pain all the time, doesn’t mean that someone else’s pain is
insignificant. Everybody hurts. Please try to be a bit more sensitive and
stop trying to tell me to be a bit more thick-skinned. Don’t get upset because I glare at you for
calling me “crippled.” But don’t ignore
me, either. Please just love me and I will try my best to love you
also.
Riley
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