Chronic Rants

This week’s Chronic Babe carnival topic is “behind the mask”.  As they write:

We know you are doing everything you can to cope with a life with illness and showing your co-workers, family, friends and neighbors that you can manage it. But when you are all alone and your guard is down, who emerges from behind that super-coping ChronicBabe you present to the world? Who is she and what is she most concerned about?

How do you talk about what’s behind the mask without first figuring out what the mask is?  I tried, but I couldn’t do it.  That’s why I wrote this post yesterday, describing the masks I wear.  As for what’s behind them, that’s harder to write about.  I’d almost rather sing in public than really examine this.  Almost.  Really, I’m a horrible singer.  Just terrible.  But moving on…

Me, Myself, and I

I’m generally a happy person.  I have great family and amazing friends and a lot of love in my life.  I do get lonely, though.  The illnesses make the loneliness worse in some ways.  Because of the illnesses, I put up walls.  After all, who would want to be with someone like me?  I try to remember that we all have baggage.  And I know that plenty of women with CIs find love and get married all the time.  Still, the pessimist in me wonders if it will ever happen.  There are also a lot of lonely days when the CIs force me to stay indoors.  I live alone, so I end up not seeing people.  I prefer to be alone when I feel lousy; I don’t want my friends or family to see me that way.  But a spouse would be different.  A spouse would be really nice to have around, actually.  And it would be nice to have someone to share things with, to take care of me when I feel lousy, and for me to take care of too.

Arghhhh!

I get frustrated.  I didn’t realize how frustrated I am until I started this blog and I noticed myself using the “Frustration” tag an awful lot.  My frustrations are because of the CIs, but they affect life in larger ways.  I would love to be able to ride a bike, for example.  It would save money, it would be great exercise, and it would be a much more pleasant way to commute to work.  Chances are good that I’ll never ride a bike again.  I’d like to go sky diving too, but that seems unlikely in the near future.  I can’t run or hike or ski.  These are all things I would do if I could.  And then there are the normal activities we all do every day.  Some days I can do them and some days I can’t and it’s all so unpredictable that sometimes I just want to scream.  So yeah, I get frustrated.

Non-invincibility

I hide behind those masks and let myself appear to be strong and healthy.  Behind those masks, I project an image of invincibility, even though I’m anything but.  People who think they’re invincible tend to get into trouble because of it, but everyone has that feeling at some point, right?  Well, not everyone.  I wasn’t born with my health problems, but they did start when I was young.  I was a child, going to school, asking my parents’ permission to play with friends, needing my parents to take me places back when it started.  I never got to enjoy that invincible feeling at a time in my life when I could try it out.  I wonder sometimes what that feeling would be like.  I’ll never know, and that’s ok.  It’s definitely not the worst part of this.  But I do wonder.  And when the mask comes off, it’s more obvious than ever that that’s one super power I’ll never have.

Boo!

Not that I let other people see it, but I get scared.  Sometimes I’m scared of a particular set of symptoms, sometimes it’s an overall fear.  How will I handle this for the next 50 or 60 years?  How will I support myself when I can’t work?  Who will take care of me when I can’t take care of myself?  What if I slip on the ice and sprain my ankle?  I can’t use crutches because of my poor joints, and my apartment building is not wheelchair accessible.  What would I do?  I try not to let the fear take over too often.  Sure, there are some days when it’s especially bad, and I let myself just feel it.  Then I brush it aside and move on.  Fear is not a productive emotion, and it’s draining, and there’s really nothing I can do right now to prevent what might happen later.  I guess I wear a bit of a mask even when I’m alone, because I try to ignore the fear, but it seems to work for me.

Shhhh

It’s not all negative.  Really, it’s not.  It’s easy to focus on the bad stuff, but there’s good stuff too.  I often feel at peace.  There’s a lot in
life that I’d love to change, but the CIs have taught me to focus on the good things.  I appreciate the days that I can walk without pain.  I’m very aware of the abilities I have now that I didn’t have just a few years ago.  I can let a lot of life’s little annoyances roll off my back because I see the bigger picture.  (Exception: bad drivers; they get under my skin every time.  Really, is it so hard to signal before you turn?)

Related to being as peace, I also feel very grateful for what I have.  For some of it I worked hard, and for some of it I’ve been incredibly lucky.  About 99% of the time I manage to remember that.

The other 1%

No, this isn’t an Occupy Boston comment (and if you don’t get it, read the headlines of any newspaper.)  This 1% would be the rare times when I lose sight of the good stuff.  Most days I’m happy despite the illnesses and their symptoms.  Some days I struggle, but I remember that there’s a lot to be grateful for (see above.)  And yes, occasionally, around 1% of the time, I feel like it’s hopeless.  I get depressed.  It might be a symptom of the illnesses or a result of having to deal with the symptoms.  Some of the time it has definitely been a side effect from the meds.  I always come out of it sooner or later, but in the meantime, it’s easy to forget all the good things in my life when I’m surrounded by pain and fatigue and all the rest.

Drumroll, please….

So what does all of this add up to?  In the end, I’m a woman, just like any other.  I spend time with family and friends, I go to work, I run errands, I date (sometimes more in theory than in reality, but still.)  I’m sarcastic, loyal, caring, nerdy, protective.  When the mask comes off I can stop putting on a show for people and just be the real me.  It’s easy to get used to the masks and forget who “me” really is, but sooner or later, she always appears.  I like her.  I hope you do too, because I think she’s going to be around a lot more.  I’m getting tired of the masks.  What about you?