Support makes all the difference

July 31, 2011

Sometimes it’s easy to get distracted by the little things.  Sometimes I think I need to find the right meds or change my diet.  Then I get reminded that while those things need to happen, it’s support that really matters.  Having supportive family and friends makes the bad stuff better and the good stuff fantastic.  Whether it’s a crazy idea, a bad mood, or just needing someone to talk to, that support structure always helps.  These people really do make the world a better place.  Let’s hope their support, sincerity, and love are contagious!

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Stories of "inspiration"

July 30, 2011

Does anyone ever forward you an email about someone “inspiring”?  Do they tell you a story?  Maybe clip out a magazine article?  You know what I mean.  These are the stories of someone with one leg who runs a marathon, someone terminally ill who climbs a mountain, that kind of thing.  I’ve gotten dozens of these personally, and this week I even saw someone post one of these on her Facebook wall.

I always wonder what people expect me to get from this.  I suppose they want me to remember that I can do anything I want to do.  Honestly, I think that’s bullshit.  I can do anything within reason, sure.  But absolutely anything?  No.  It’s stupid for me to think I could, and I could seriously hurt myself if I try.  Can I run a marathon?  Not a chance.  My knees hurt like hell when I try to run to catch a bus.  On a good day I can jog a block or two before they turn to jelly.  My doctor has told me not to run.  So has my physical therapist.  A marathon is just a bad idea.  As for climbing a mountain, let’s see…. there’s the fatigue to overcome.  Then there’s the knee issue – climbing one flight of stairs is tough, 4 is nearly impossible, so a mountain seems unlikely.  And then there are the breathing difficulties.  Climbing a mountain seems about as likely for me as running a marathon.

So what these story-providers are saying is that if these other people who I don’t know and will never meet and who have “worse” conditions than I have can do these amazing things, then I should be able to do whatever I want to do.  There are some parallels missing here.

Yes, their logic is off.  But then, there’s the hidden message, the message that they expect me to be able to do anything I want.  Society expects it.  We look up to people who have seemingly-impossible-to-conquer limitations, who then conquer their limitations.  We learn that this is how we should all live.  It gives the impression that those of us who don’t achieve these amazing accomplishments have somehow failed.

This is a huge burden, and it’s entirely unfair.  I will never run a marathon or climb a mountain.  You know what my great achievement is?  I work at a job, I maintain friendships, and I live independently.  No one is applauding these accomplishments (except for my mother, who is the greatest supporter I could ever want.)  I doubt anyone will want to publish my story.  Society doesn’t think this is so fantastic.  It takes all of my effort every day to do what others take for granted, and for that, I am told, at least in an implied way, that I’m not doing enough.

Well you know what?  Working, having relationships, and being independent is my goddamn mountain.  Deal with it!


Where’s the Friday fun?

July 29, 2011

Every Friday, it’s the same thing at the office: “Do you have anything fun planned for this weekend?”  I really can’t say, “Yes, I’m recovering from the physical exhaustion of being here.”  Somehow, I don’t think that’s the answer they want.

It’s Friday night, and movies, books, tv (especially Sex In the City reruns), magazines, and friends, all give the impression that a single 30-something in the city should be out having fun.  Now, let’s forget our personal preferences.  Some of us love bars, others prefer museums, still others would rather stay home.  The point is, it would be nice to have a choice, right?  Instead, most Fridays nights see me at home not because I want to be home, but because it’s necessary.  Working full time is exhausting.  By Friday, I’m just relieved to get through the day, get home, and collapse.  If I can spend the evening reading, as I did tonight, instead of mindlessly zoned out in front of the tv, I figure the evening is a success.

But go on a date?  Not likely.  Meet up with friends?  Very rare, and only with friends who understand if I need to crap out early.  Out to the movies?  A bar?  A party?  I’m too worn out for that.  But wait, I’m still young!  I wonder how things will be in 10 years.  Or maybe the new meds will work and I’ll be acting my age by the end of the year.  Ok, I know that’s unlikely, but I just want a shot at pretending to be “normal.”

So for all of those who are stuck at home, like it or not, on this Friday evening, I want to remind you that you are not alone.  We are not all Carrie Bradshaw, heading out in supposedly-stylish clothes (am I the only one who thinks most of her outfits were ugly?) to check out the hottest restaurants and clubs.  We’re not all heading down to the local bar for drinks and music with friends.  Some of us are honoring our limitations by simply giving in to them.  And that’s ok.  We do what we have to do to get by, right?  And hopefully a Friday night at home will lead to a Saturday afternoon out.  If not, that’s ok too.  Just find something to do that will make you happy, wherever you are.  At least, that’s my plan.


Being right is over-rated

July 28, 2011

I wish I was wrong yesterday, but I wasn’t.  Today sucked, and still sucks.  Waking up early for an unpleasant medical appointment is never fun.  Coming home late isn’t so great either.  Working at a boring, mindless job in the middle makes it all worse, especially when the boring, mindless job involves a lot of computer work, which only makes the pain worse.  The bright spot was that the pharmacy was really quick in filling the prescription that I don’t want to have to take.  And the boring, mindless job has good health insurance benefits, so I guess that’s a positive.  But no, I feel like crap, so I prefer to stay in a lousy mood for a bit longer.  Tomorrow I’ll be back to my happy, cheerful self.  Well, more or less.  Now, I’m just hoping to stay awake long enough to do some dishes and then go to bed at a reasonable hour.  Going to bed too early and throwing off the already-precarious sleep schedule will definitely not help things.  Ok, must stay awake, must stay awake, must stay awake……


The counter-productiveness of self-preservation

July 27, 2011

I need a job.  Well, I need an income, but I don’t have a trust fund or a wealthy spouse, so I guess I need a job. The more I work, the worse I feel, so I’m looking for ways to cut back my hours.  In the meantime, I have a basic 9-5.

I also need doctors.  Like it or not, I need them.  This week, I need them to help me find a new long-term treatment.  This is not a pleasant prospect.

So on top of having a lousy appointment to discuss long-term treatments which will no doubt have horrible side affects, I also have to wake up an hour early for the appointment, which will make me feel horrible all day, and then I have to work an hour late to make up for coming in late due to the appointment.  It’s going to be one long-ass day.

And that’s what happens when I try to take care of myself by balancing a job and my health.  Yikes.


Medications vs. Symptoms: Can there be a winner?

July 26, 2011

I’ve noticed that so-called “healthy” people often think of medications as cure-alls.  Have an ear infection?  Take some antibiotics and viola!  All better!  Gee, that was so easy.  But venture beyond your basic, easily-diagnosed, known-cure issues, and it gets more complicated.  Constantly queasy?  Take this and you’ll just be constipated instead.  Trouble breathing?  Just use an inhaler.  Oh, but watch out for the jitters.  Auto-immune issues?  Would you prefer the drug that will make you permanently infertile, or should we just skip that and go right to chemo?  Oh yeah, these are real fun decisions to make.

The thing is, in the big battle between the side effects of meds and the symptoms of illness, there’s no winner.  When the symptoms are worse than the side effects, it’s time to take the meds, but that doesn’t make it fun and it certainly doesn’t make it easy.  Every day (or week or whatever) you choose to take a pill or get a shot or otherwise receive something that you know will make you feel horrible.  But hey, it’s not as bad as what it’s preventing, so that makes it ok, right?  Well, maybe not.  At the moment, we work with the options we’ve got.    Still, that doesn’t mean I like the options.


For no reason at all

July 25, 2011

It’s amazing how suddenly symptoms can pop up.  There you are, just minding your own business, and they hit you.  Or at least, they hit me.  There I was, working on the computer today, minding my own business, when I felt the pain.  It was sudden and severe.  Now, since I was working on the computer, you’d think it would be in my back, my neck, my fingers, my wrists, my shoulders.  Nope, it was none of those.  That would make too much sense.  There I was, typing away, and I felt this horrible pain in my *toes*!  And it gets worse.  I was sitting cross-legged (yeah, yeah, it’s horrible for my posture, so sue me) and it was the foot that was off the ground that had the pain.  There it was, mid-air, and the pain attacked.  What’s up with that?  Ok, these things are unpredictable, I get that.  But are you kidding me?  Pain in my foot while it’s just hanging out?  That’s just so wrong.  If the pain’s going to hit, it should at least make a tiny bit of sense.  I know that’s asking too much, but sometimes I just fall back to wishful thinking.


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