Monday, October 3, 2011

Leslie’s Life In Lupus Land

I’m not sure I believe in fairy tales anymore.  But Lifetime movies, and after school specials?  Totally.  Because it feels as if my life has become one.

I can’t really explain the drama that befalls me, because I hate drama.  Despise it.  And yet, it keeps on coming.

And then there’s lupus.

For me, toxic relationships aren’t really an option.  If a person continually does things that cause me to flare, guess what?  They’re so out of here.

But we don’t always get a choice about who comes in and out of our lives, and when.  And this lack of control, as with lupus, is the problem. 

I’ve been physically and emotionally exhausted lately.  And totally unproductive. 

And the way my right rib and side feel, and my right hip, I’m totally flaring.  It’s the weirdest thing, this body of mine.  And I have to go through the laundry list of possibilities…A flare?  Appendicitis?  Kidney Stones?  Because having lupus means that a pain just isn’t pain.  It could be the sign of something worse to come.  

And very few people understand that.  I cringe when I’m in class or on the bus and there is a cougher, because the likelihood that I end up with a cough the next or a few days later is great.  So the reality is, I could never leave the house.  That would offer some protection for my immune system, but it would greatly diminish my quality of life.  So I get up, get out, and soldier on.  But it’s the soldiering on when illness AND the rest of the world comes knocking at the door, that makes it so hard.

But instantly, my survival instincts kick in, and I realize that I have to stop the flare at the source.  No, not my body.  I have to purge my life of the cause(s) of the flare.   

To be honest, the reason the physical part is heading in a downward spiral is because the mental part is pretty much in the toilet right now.  I’ve been dealing with some personal stuff.  And I’ve come to realize that I’m a magnet for immature, emotionally unavailable assholes.  Which is funny because I would consider myself not to be an immature, emotionally unavailable asshole.  I guess it proves the theory that opposites attract, right?

Well, I’m so done with it.  I’m sick of dating guys who are only dating because of the social pressure they face, when in reality, they don’t have time or space in their life to see, let alone care, about another human being.

That’s not the way I operate.  I don’t do anything halfway. 

And neither does my body. 

And when my body calls, I have to respond.  So sorry that I spent the weekend on the couch because I felt physically and emotionally like shit.  Apparently that makes me not cool enough or something.  And I’m not actually apologizing.  It’s more of flipping the bird to any guy who has treated me badly. 

Because honestly, I dare them to a spend a few days in my shoes, to see everything that goes on, to see the time, effort, and thought that goes into everything I do, including dating, and then look at me and tell me that I’m not good enough.

There’s no escape.  Lupus is always here, knocking at the door, lurking around a dark corner, and always ready to take me down for the count.  So it would nice, if just once, there was a positive distraction, something to help take edge off of the ever-present eye of lupus. 

But the daily trials of lupus are something that people can’t understand until they’ve experienced it.  And it’s something that I swallow down and keep inside.  Unlike the carefree 25 year old guy who wants to party all the time, I don’t have that luxury.  I only have so much energy stored up, and lately, it’s never enough.

And the reality is, if a guy decides he doesn’t really want to get to know you when you’re relatively healthy, he definitely won’t want to get to know you when you’re sick.  I just want someone to be there.   I don’t think that’s expecting too much.  I just want someone who won’t say, “I’ll just throw a blanket over your head and go to work.”  Because I have literally had guys tell me that that’s what they would do.  And we never make it far enough to see if that’s really true.

So let’s face it.  I’m struggling a bit with a past that feels kind of fucked up (relationship-wise), and a future that’s uncertain (health-wise, and everything-wise).  In some ways, I hate that lupus is the litmus test for relationships.  On the other hand, though, it is a great way to see if the other person will be there for you when it really counts.  It’s definitely a deal breaker. 

Illness wasn’t directly a deciding factor in this most recent situation.  But some of the insensitive things that were said made me realize that this person wasn’t ever going to get it.  And would I really expect a guy who spends his days with high school students – and matches their maturity level – to understand anything more about the world than sex and drinking games?  No.  Didn’t think so.    

So don’t talk to me about an hour away being too difficult.  I put the D in difficult.  And don’t tell me that it’s such an inconvenience.  You want inconvenient?  Look at chronic illness.  That’s inconvenient.  See, the way I work, which is obviously not the way that all people work is that anything worth fighting for isn’t going to be easy.  But a lot of people just expect things to fall into their lap.  Well, I’ve had to work hard for everything in my life.  I don’t expect there to be shortcuts.  And my life continually reminds me that there aren’t. 

A trap I fall into too often is thinking I can’t be too picky because of my illness baggage.  But the reality is that if someone can end things because they view a 40 minute drive as too “long distance,” then I can stick to my guns that I don’t date younger guys.  I mean, if you figure that a 25 year old man has the maturity level of a 12 year old, is there any chance that I will find someone under the age of 60 who is mature enough for me?

And I think I have to start following my own advice, not telling anyone about a relationship, maybe even until I’m engaged.  Because it seems like once other people know, it all goes to shit.     

I don’t believe in fairytales, but I do hope, that some day, some guy will look at me and think that I’m the smartest, most beautiful girl in the world, warts and all.  Until then, it’s just another day, week, month, year in Leslie’s Life In Lupus Land.

I wish it came with a Mad Hatter and White Rabbit.  That would certainly make things more interesting. (Although as far as men go, they were pretty fickle, too)     


  1. Ah, yes. The emotionally unavailable arse. Very familiar with them. Realized I probably chose them for a while - it takes a lot of courage to trust and give yourself fully when you have the complicating factor of a chronic illness. And there are a lot of them around, so even when you try to find someone good, you have to wade through a lot of frogs before you find a prince.

    Congratulations on valuing yourself highly enough that you saw his line for what it was: crap. All about him, had nothing to do with you. The good ones are out there and yes, they tend to be past 30.

  2. I do believe it's the guys (or girls, depending on a person's preferences :) who will step up and be there for us in bad times that are the keepers.

    And like Lene, in my experience, those kinds of guys are generally over 30. I'm sure there are some in their 20s (I think my husband probably was, although I didn't know him then), but they're much harder to find. :-/

  3. Yes! You are worth someone looking at you that way. One of the gifts my husband of 29 years has given me is that he hasn't stopped looking at me as the person he fell in love with, not the RA person I sometimes see myself as.

  4. I am sure I have been an ass to a woman or two in my life. I know a couple of women have been asses to me. I wonder why? There is no need for such behavior.

    OK that was my 60 year old self talking. I do not have a daughter but I have a granddaughter and if someone treated her in such a manner. I may start hitting. Thus it is likely best if she does not tell me. Best for who?

    Mostly me I guess, I trust my 9 year old granddaughter and her father can take care of any one messing with her.