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
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Suspicious of hope

August 30, 2012

We mourn the loss of our health the way we mourn other losses.  For me, I went through the 5 stages of grief back in my teens, when I realized the daily pain was going to be a permanent part of my life.  Then I went through them again at age 23, when I was diagnosed with an autoimmune condition for the first time.  These were different kinds of losses.  First I had to accept the current symptoms, then later I had to accept that things might get worse eventually.

About 10 years later, now I’m experiencing something new: hope for improvement.

At first, with the pain, there seemed to be no point in hoping for improvement.  After the initial rounds of doctor appointments, tests, and surgery, it was clear nothing would change.  I could accept that, because its effect on my life felt limited.  Unpleasant, horrible, obscene, but limited.  Later, with the autoimmune diagnosis, there still seemed to be no hope for improvement, and I foresaw a very difficult life ahead, but that was in the future and I was living in the present, so even though it was in a part of my mind, I tried not to focus on it.  More recently, of course, my life was altered drastically, and I didn’t feel anymore like I was really living my life, but more like I was just trying to get through it.  This is no way to live, but what choice did I have?  And that’s where the hope came in.

Now I picture my future as being better than my present and that worries me.  I worries me mostly because I have no idea if it will be true.  I picture a better future in part because I have some medical reason to hope, because I am pursuing new treatments and so far they have helped a bit.  But I also picture a better future because I refuse to picture a future like my present, or possibly even something worse.  I picture a better future because it’s what I have to live for, and I need that ideal.  But is it realistic?  Is it even possible?

I am scared to hope.  I am scared that I will get my hopes up and will then be crushed when I don’t improve.  My dreams are simple: to go back to work, to date, to travel a bit, to maybe even have a family one day.  But to anyone who has been ill like this, these dreams aren’t simple.  They aren’t easy and they aren’t a given.  Dreaming of these things could be a way of setting myself up for a huge disappointment.

How can I stop?  I honestly don’t know.  It isn’t as though I spend an hour daydreaming about what I’d do if I felt better; it’s much more subtle than that.  I hear about an interesting job, and wonder if that’s something I might want to do when I go back to work… and then I remember that I don’t work.  I remember a great trip I took and think about going back… and then remember that I can’t travel.  I think about how much I should save up for my next car… and then remember that I have no income to save.  I picture moving to a smaller apartment until I meet someone… and then remember that I’m not dating.  It’s hard to shut off these automatic projections of the life that I always assumed I’d have.  I suppose that in time, I’ll change my frames of reference, but I’m just not there yet.  So should my goal be to stop dreaming?  That’s a horrible goal.  And yet…

So a part of me is continuing to hope, even while another part wants to run away from any sign of hope.  And in the end, I just hope, desperately, that a little bit of what I’ve been dreaming of will come true.

1 Comment | Expectations, Frustration, Isolation, Limitations, Unpredictable | Permalink
Posted by chronicrants

Socially limited

August 23, 2012

There’s a woman I know who I really like.  She’s a friend of a friend and we belong to some of the same social groups, so we see each other around, but we haven’t hung out too much outside of that.  Then this week she invited me to her place to watch a movie and hang out with a bunch of other people.  Social time!  I could hang out with someone I like, and hopefully meet some of her cool friends!  I feel like I never get to be social anymore.

And today was no exception.  I just don’t do as well in the evenings.  I have more energy earlier, but people are at work then.  I had my doubts all day long, but I kept hoping I’d make it.  I took a shower so I’d be all nice and clean.  I planned out what I’d bring for food, since I always have to carry food while I’m on this whacky diet.  I thought about what energy threshold would determine if I’d walk or drive that particular distance, and if I had to drive, what route I’d take to get around the road construction near me.  I had it all figured out.  And then I fell asleep.

Taking a nap is generally not a good thing for me.  After a nap, I don’t feel right.  Of course, this wasn’t an intentional nap.  I was reading a book and I fell asleep, simple as that.  After I woke up I felt groggy and just “not right.”  I finally gave in to my rumbling tummy and had a snack.  Then another snack.  Then an early dinner.  I shouldn’t have been so hungry after the huge lunch I ate, but I was.  And I still felt off somehow.  I rested.  I relaxed.  I knitted.  And I still didn’t feel right.  The clock was ticking.  I should have left by now.  I watched tv. I should be there by now.  I read the news.  They’ve probably started the movie.  I washed the dishes.  They’re probably all having fun right now.

I finally gave up.  If I was going to go, I’d have left already.  If I didn’t feel up to leaving by that time, I knew I just wouldn’t be up to it at all.  There was a time I’d have pushed myself to go anyway.  I’d have felt bad the next day, but I would have pushed through, and by the second day I’d be ok.  But those days are long gone.  If I pushed myself today, it could mean 2-3 stuck inside resting, and it just wasn’t worth it.  I have other, daytime plans over the next few days.  I’m in my early 30s but going out in the evening is just out of the question right now.  Sometimes life just sucks.

Thank goodness I can still go out during the day most days!

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