You really want my illness to be predictable? Really?

August 13, 2011

Chronic illnesses are unpredictable.  That is actually one of the more difficult aspects of CIs.  If I knew when I’d feel good and when I’d feel lousy, life would be a whole lot simpler, but it just doesn’t work that way.  I know that.  I’m guessing you know that.  Somehow, other people seem to miss it.

I’m good at my job.  I get the work done well and ahead of schedule.  I also try to limit my sick time to when I really truly need it, since it would be easy to use it up too quickly.  Until recently, I had taken off a handful of days, but only one day here and there, usually 1-2 months apart.  No one cared.  Then I got a cold.  Of course, my immune system is naturally messed up, and I was on a med that made it worse, so I wasn’t recovering.  I missed 5 days of work and my boss was unhappy.  People had to cover for me and some work didn’t get done.  I don’t see how this is any different than when a coworker broke a leg and was out for 2 weeks, and others had to do her work.  I guess her boss was more understanding than mine.  And a broken leg could happen to anyone.  Apparently, I was asking for special treatment by using my sick days for being… what’s that word?  Oh yeah: SICK!

Things escalated and I ended up having a formal meeting with my boss and someone from HR.  Basically, my boss wanted my illness to be more predictable.  I was out sick at a very inconvenient time and this bothered her.  Um, excuse me, it bothered you?  You think I was actually happy about it?  What are people thinking?  She wants my absences to be more predictable.  Well guess what?  So do I!  I also want to know if I’ll have to cancel my date on Tuesday because I’m suddenly in pain, or if I’ll have to skip next week’s bbq because the heat is bothering me.  I would love to predict to how I’ll feel on any given day.  But chronic illnesses don’t work that way.  Hell, LIFE doesn’t work that way!  Deal with it.  Get over yourself.  Life is unpredictable.  And by the way, when I came back to work I worked hard and got everything done, so really, what’s your problem lady?

What makes me really sad is that I thought this was a case of an unusually unrealistic boss.  Then I read this:
http://workingwithchronicillness.com/2011/08/unpredictable-a-synonym-for-chronic-illness/

I would really love to educate these people.  For now, I’ll work on getting my own boss to understand how CIs, and life, really work.

1 Comment | Educating, Frustration, Insensitive, Job, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

The elusivisity of sleep

August 9, 2011

Get more sleep and avoid stress.  That was the advice of the doctor who first diagnosed me.  I thought he was nuts.  If it was so easy to get more sleep and avoid stress, wouldn’t everyone do it?

Eight years later, I’m doing much better on both counts.  It’s not like I get enough sleep every night, or avoid stress altogether, but I’m getting closer to enough sleep, and keeping my stress as minimal as possible.  It’s not easy, and I certainly slip, but overall I feel that I’m succeeding on both the sleep and stress fronts.

That’s why it’s especially infuriating when I don’t get enough sleep through no fault of my own.  What right does my body have to wake up at 5:30am on a Saturday for no reason?  That’s not fair!  After four nights of oddly vivid dreams it suddenly occurred to me that this may not be a coincidence.  I did some counting and realized this could be related to the new med.  A few minutes online proved me right: this is a common unlisted side effect.  Great.  Just great.  So now what?  When I don’t get enough sleep for several nights, my body starts to revolt.  I get pre-flu-like symptoms and feel just lousy.  If I still don’t get enough sleep, I usually get sick.  Today I started to get the pre-flu-like symptoms.  This is not a good sign, folks.  If the problem were my own schedule, I’d simply go to sleep earlier.  Instead, I fall asleep fine, then wake up feeling unrested.  This med is screwing me there’s not a damn thing I can do about it… except stop the med.  That’s not a great option.  So I’ll keep going.  With any luck, my body will adjust to the med and the elusive sleep will return.  And if I’m really lucky, the med will even do the work it’s supposed to do in the first place!

And in the meantime, I’ll continue to stumble through my days.  My mind is getting fuzzy, my body is weak, and there are big dark circles under my eyes.  But if there’s one good thing about constantly feeling lousy, it’s that I’ve learned to fake health pretty well.  When I get to work tomorrow, no one will be the wiser.  Unless this continues.  By next week, it’ll be pretty damn obvious.

Note: Yes, I know that “elusivisity” is not a real word.  If I’m going to be sleep-deprived, I might as well get to make up some fake words, right?

1 Comment | Frustration, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Planning. Or not. Well, maybe.

August 5, 2011

I took a quick look at my calendar for next week, just to see.  There are things I want to do after work on Tuesday, Wednesday and Friday.  Hmm, I might be able to do all three.  Probably not.  That takes a lot of energy that I don’t have.  And it’s summer, with it’s draining heat.  How to choose?  Planning on two nights sounds good.  The two I most want are on Tuesday and Wednesday.  But those are consecutive days, which is a bad idea.  And then I might be too worn out for work on Thursday and Friday.  But I don’t need to give 100% at my job anyway, so maybe this could work?  Ok, what’s my first choice….?  Wednesday.  Definitely Wednesday.  Maybe Tuesday is a bad idea then.  I don’t want to risk missing Wednesday.  So…. Wednesday and Friday?  That gives me the thing I want most and my third choice, which would still be a lot of fun.  But Friday’s thing is far away from my job and my apartment.  So is Tuesday’s.

Does this sound familiar?  I’m guessing a lot of CIers go through this on a regular basis.  I feel like I’ve been doing it forever.  I’ve heard stories of 20- and 30-somethings who go out all the time.  You probably have, too.  I even know people who do.  It’ll never be me, and that’s ok, but it would be nice to at least do the few things I want to do, or at least to do some of them without the crazy planning and calculations based on a ton of unknown variables.  I just hope I don’t have to cancel on anyone at the last minute.  Again.

Leave a Comment » | Frustration, Isolation, Limitations, Rants, Unpredictable | Permalink
Posted by chronicrants

Whether weather matters

August 1, 2011

Weather is a real pain in the you-know-what.  We can’t control it, we can barely predict it, and it can have a huge impact on our quality of life.  So many chronic conditions are affected by the weather.  People have said, “Why don’t you just move?”  Yeah, that’s easy for you to say.  Have you ever moved to a new city without knowing anyone there?  I’ve done it.  It’s hard.  It’s really really hard.  And the weather was great, but I didn’t like the city, so I was pretty unhappy there.  Where would I be happy?  And where would I even feel better?  I can’t be in a place that’s too hot and humid, or a place that’s too snowy and dark.  And since I’d need a job, and I’m not a citizen of any other countries, it would probably need to be in the U.S.  That’s pretty limiting.

I don’t want to move.  My family is here.  My friends are here.  I would hate to leave the people I care about.  But I know I’ll move some day.  Every summer is worse than the one before.  Every year I question how much longer I can stay.  My seasons in Boston are limited.  I love this town, and I’ll be sad to say goodbye.  Until then, I’ll enjoy it as much as I can.  And stay indoors with the a/c.

Leave a Comment » | Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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