Shutting off the "good" switch

August 16, 2011

Almost every night it’s the same thing: I start to feel better as the hours pass.  My body naturally does better in the evenings, and having some time at home (away from work) helps too.  I start to feel better and even less tired, so I want to make good use of the time, I want to enjoy it, even by doing something simple like reading a book or watching a movie.  So what’s the problem?  The problem is that I still work in a 9-5 world, and that means waking up much earlier than my body would like.  It means that if I go to bed at a “natural” time then I’ll feel horrible in the morning and through much of the next day.  On the other hand, it’s hard to consciously choose to go to bed early when I’m finally enjoying my day (well, night.)

So now it’s not too late, and I’m feeling good.  I want to stay awake and continue to feel good, but what I should really do is take a pill so that I’ll fall asleep in an hour.  That means I’ll wake up feeling less bad.  But is it worth giving up “good now” for “less bad” tomorrow?  I just don’t know.  I better hurry up and decide, though, if I’m going to take that little pill right now.

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

Use it before you lose it

August 14, 2011

The other day I posted about using the good days to their fullest.  Yesterday and today I did that, and I’m so glad that I did.  Now, tonight, I’m hit by more than being tired – this is full on exhaustion, bordering on fatigue.  I’m too tired to get my glasses (so I may find some typos on here tomorrow) and I just barely have enough energy to write this almost-post.  There’s a good chance I’d be this tired even if I hadn’t pushed myself the last two days, and either way, I have no regrets.  If we don’t use the goods days as much as we can, then what’s the point of living?  Yep, it’s totally worth it.

Now, time to go to bed very very early.

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

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

Use it while you’ve got it

August 11, 2011

You know how some days are so horrible that you can’t imagine having a good day?  And then a good day comes along?  Maybe it’s a day without pain or a day without fatigue or a day without nausea or simply a day where the symptoms are a bit less horrible than they usually are.  Those days are amazing.  I love those days.

Sometimes it’s easy to miss a good day when it’s simply a day with less-bad symptoms, but it’s worth watching for.  I may never ride a bicycle again, or get to jump out of a plane, or drink alcohol, but I know that I use the good days the best that I can.  I think that if I didn’t use those days, they’d feel like a waste.  I don’t have to do anything much on the good days, just know that they exist and appreciate them and feel happy about them.  Doing that is enough.  So that on the bad days, at least I know I made the most of the good ones.  I may have other regrets in life, but wasting the good days won’t be part of them.

Leave a Comment » | Expectations, Raves, Symptoms | Permalink
Posted by chronicrants

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