My invisible chronic illness is never really invisible

September 24, 2012

I have multiple chronic illnesses, and technically they’re all “invisible” chronic illnesses, but to me they always feel visible.

Ok, I admit that a stranger might not notice anything at first glance, but someone who knows me well should see the signs.  I feel like they’re incredibly obvious.  I don’t use a cane or a wheelchair or any other aide, but the signs still scream out.  Sometimes it’s a tiny limp, or a grimace when something hurts.  My face could be flushed or pale.  It could be the way I lay my hands in my lap, palm up with the fingers curled, in a very unnatural way, but the only way that won’t cause excruciating pain.  There’s the way I might be sitting in a chair, and when I cross my legs I have to use my hands to pick up one leg and move it over the other.  How could people miss these signs?

And then, when all else fails, there’s always my eyes.  I admit, some days are worse than others.  Some days my eyes might not betray anything, or maybe there will only be a hint.  But then there are the other days….

Yesterday was exhausting.  It was stressful and happy, fun and tiring.  By the end, though, I was fatigued and every muscle hurt – I’d overdone it.  If I had thought about it, I would have expected to look bad, but why would I think about it?  It never crossed my mind until I was getting ready for bed.  I went into the bathroom, stood in front of the sink to brush my teeth, and did a double-take when I looked in the mirror.  I looked that bad.  My skin was burned and dry, my shoulders were hunched and sagging at the same time somehow, my hair was sticking out in all directions.  But my eyes.  My eyes showed it all.

My eyes were sad.  They were a bit puffy and swollen, so they weren’t open all the way.  One was less open than the other, which doesn’t happen unless I feel this bad.  The lids were extra wrinkled.  They were glassy.  They were just wrong.

Logically I understand how these “little” things can be overlooked by someone who is not watching for them.  I get that.  And at the same time, I feel like my body is shouting out the signs: LOOK HERE!  SHE’S REALLY SICK!  IT’S NOT INVISIBLE AT ALL!  But then, it’s never truly invisible to someone who’s really looking, is it?

10 Comments | Educating, Expectations, Isolation, Rants, Symptoms | Permalink
Posted by chronicrants

Saturday night slump

September 22, 2012

It’s Saturday night and I’m the pathetic “friend” checking status updates on Facebook.  It’s 9pm on a Saturday and I’m at my computer.  I have plans.  Well, I had plans.  There’s a huge, once-a-year event that I love, and this year, for the first time, it’s just a short walk from my apartment!  I really want to go.  But I’m so tired.  And I have to be up early tomorrow.  But I want to go.  But I have to be up early tomorrow.  And I’m tired.  But it’s only once a year.

Sound familiar?  I’m sure most of you have experienced this.  I’ve certainly written about it before.  And a bit more recently, too.  And it still sucks.  I don’t expect to go out every night.  I don’t even expect to go out every Saturday night.  I just want to go out tonight.  I guess that’s asking too much.

Now in fairness, I actually could go out tonight.  I could throw on some halfway-decent clothes, walk five minutes, and hang out with friends and new people.  I could flirt with some cuties (there will be a lot of single people there, and while I’m not in a good place in my life to date now, some flirting could be fun.)  I could have a lovely time, then come home at a reasonable hour and get some sleep.  So why don’t I do this?  Well first, I’m so run down, I don’t know that I have the energy to flirt and chat with people I don’t know.  Plus, I really do have to get up early and be active (active by my standards, at least) tomorrow.  I should have planned that better, but I had forgotten to put tonight’s event in my calendar, so I forgot about it when I made tomorrow’s unchangeable plans.  I went out last night, so it’s not like I’ve been stuck at home for days, which happens sometimes.  But I’m still just frustrated.  I was inside all day yesterday until I went out at night.  Since then, I’ve been inside all day today.  I missed the sunny weather.  I’m missing the fun tonight.  I feel like I’m missing my own life.

I want to think this is temporary.  And let’s be honest: a few months ago I wouldn’t have been able to go out to last night’s thing either, so I’m making huge progress!  And there will be another event next year.  Maybe I should put that in my calendar now.  But then, what if it isn’t temporary?

I feel like I should apologize to you.  I sound like a whiny kid, all upset because I’m only getting some of what I want.  And that’s true.  As we all know, when you’re living with a chronic illness, there’s a lot you don’t get.  Sometimes I can handle it, sometimes I can’t.  Today isn’t one of the better times, but I’ll get through it and life will go on because really, what other choice is there?  So tomorrow I’ll be a happy, mature adult.  But for tonight, I think I’ll indulge in a bit more whining.

2 Comments | Expectations, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

The joy and joint pain of autumn

September 18, 2012

I love autumn.  The heat and humidity of summer are gone, and with them a lot of my extra fatigue and other symptoms have gone.  And it’s pretty.  The sky is clear most days, the leaves change colors (they’re just beginning now,) and the air is crisp.  I’m happy every time I look out the window and see the lovely weather.  This picture is from last year, but you get the idea.

Of course, right now we’re in a transitional time.  Right now, summer is mostly over, but not quite.  And it’s mostly autumn, but not entirely.  We haven’t transitioned completely to the cool days yet.  Sometimes I’m hot in a t-shirt and sometimes I need a sweater.  It’s mixed.

And we all know what that means, right?  If you don’t experience worsening symptoms during spring and fall, then you’ve probably heard from others who do.  My rheumatologist says that her phone rings constantly in the spring and fall.

For me, spring is definitely worse.  My body seems to know that bad times are coming, with summer on the way, so it goes haywire.  But autumn isn’t the easiest thing either.  For the last couple of weeks, it seems to have manifested itself as worsening joint pain, especially in my fingers and wrists.  Now, I’ve had pain in these areas for more than 20 years, so it’s not like I can’t handle the pain itself.  What’s bothering me is that no movement causes stiffness, and small movements from fidgeting makes it worse.  Big movements are good, like washing dishes or cooking or sorting through a pile of books (as long as they aren’t too heavy.)  And the problem is that I just don’t have enough of these big movements to keep my joints happy.  I’m home a lot these days, so I’m open to suggestions for things I can do at home to keep my fingers and joints useful without using up too many of my spoons.  Typing on the computer or reading or watching tv all seem to be bad things for my achy hands, and that’s how I usually fill my days, so I’d love some new ideas.

How’s autumn for you?  Is it a rough transition, or is your body just glad to be out of summer?

Good luck during the changing of the seasons CI folks!  At least it’s pretty.

4 Comments | Expectations, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

The oh-I-could-never-do-that response

September 17, 2012

Sometimes we do things that are hard.  Occasionally something is easy, but often it’s hard.  Very hard.  Damn hard.  We do it to improve our health.

So why do we do these difficult things?  Are we gluttons for punishment?  Do we enjoy the challenge?  Are we masochists?

Or are we people in pain?

Yeah, that’s what I thought.  The last one, right?  Me too.

And that’s why it pisses me off when someone hears that I’m eating a very restricted diet, or that I live with constant pain, or that buying groceries on a bad day is a huge effort, and their response is “Oh, I could never do that.”

At this point I figure they say this for one of two reasons (but please let me know if you think of another!):

  1. They don’t believe that my symptoms are as bad as I say they are.
  2. They can not possibly imagine how bad my symptoms are, because they have no frame of reference.

I want to believe that it is usually #2, that they just can’t imagine daily nausea that is so bad, you’re willing to cut your favorite foods out of your diet to be rid of it.  But really…. who couldn’t imagine that?  And if it’s #1, that just pisses me off to no end.  After all, these aren’t strangers, these are friends and family who are saying this.  They aren’t suggesting that it isn’t worth it for me to try these “drastic” measures of changing my diet or trying new supplements, but they say that they would never be able to do it.  Maybe they’re trying to suggest that they’re too weak to try and therefore I’m strong?  But in the context, that’s not how it sounds.  It sounds like the pain could never be so bad that it would be worth giving up desserts on the off chance that it might help.

So for all of you doubters out there, have someone whack you as hard as they can in the knee a few times with a hammer.  Now, would you rather have someone do that every hour, or would you rather give up chocolate forever?

Yeah, I thought so.

7 Comments | Educating, Frustration, Insensitive, Rants, Support | Permalink
Posted by chronicrants

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