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

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

Your molehill is my mountain

August 3, 2011

I’m exhausted.  After a full day of work, I walked just over a half mile, while carrying stuff (purse, sweater, book, etc.).  I did errands, then walked more than a half mile back.  It wasn’t very hot, but it was a bit humid.  It was just over a mile, and I did it!

I know people who jog 3 miles for fun.  I know people who run marathons.  I know people who take a walk after dinner to relax and end up going more than 2 miles round trip.  That’s great for them.  But this is me.

Six years ago, I finally got the “something is better than nothing” message drilled into my head by one of my doctors, so I started small.  I spent about 10-15 minutes walking 1/4 mile twice a week.  That was the most I could manage then.  I gradually built up.  Now, some days I can walk a lot more and some days a lot less.  Some days, I can barely walk from my couch to my kitchen.  Other days, a mile feels like nothing.  So what does that make today?  It makes today better than some days and worse than others, and definitely a reason to celebrate.  It makes today a success. There may be a day when walking a mile is a completely unattainable goal.  Now, I’m going to live it up while I can.

A mile!  Yay me!

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

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