Obeying fatigue

December 9, 2011

I should be checking my cleavage in the mirror right now.  I should be putting on some lipstick.  A party is just getting started at this very moment in a house in Boston.  I don’t know most of the people there, but I know there will be a lot of cute single queer women.  But I won’t be one of them.  Nope, not me.

I don’t know what’s been going on these past few weeks.  I’ve been fatigued  in a way I’ve never been before.  I had blood drawn today so my doctor can check for anemia and whatnot.  And in the meantime, I’m staying home, canceling plans, missing out.  I even had to miss a support group meeting today!  Oh, the irony.

It sucks.  Keeping up with friends is hard when you have health problems.  Dating is hard when you have health problems.  But meeting someone to date when I can hardly leave the house?  Impossible.

So this is my grumpy post for today.  I’m pissed off, but not as much as I should be, because I don’t have the energy for that much emotion.  Instead, I’ll go watch a movie, eat some popcorn, and pretend this is my choice.  Yeah, right.

 

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Leave a Comment » | Expectations, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
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A “Holy sh*t!” moment

December 8, 2011

I’ve thought through all the possibilities, considered every angle, but that one question felt like someone slapped me upside the head.  Actually, no, it felt more like I’d been hit with a steamroller.  How had I never thought of that before?

Last year I applied for FMLA at work.  I was told that I got 12 weeks of FMLA total for the year.  I shrugged it off, saying that I wouldn’t need 12 weeks.

A few months ago I applied for short term disability insurance (STD.)  I was told how long term disability insurance (LTD) works, just as part of the application process.  I shrugged it off, saying I wouldn’t need LTD.  I wouldn’t need all of the STD.

Now I’m on STD and it will be lasting more than 12 weeks.  And suddenly LTD doesn’t seem so unrealistic.  Maybe I will need it after all?  But no, that can’t be.  If need be, I’ll just get a part time job.

Last night I told a friend that I had applied for a part time job.  I wasn’t looking for work, but a friend told me about a perfect opening at his organization, a place I’ve wanted to work at for years now.  It would be stupid not to apply, so I did.  When I mentioned this, she seemed surprised, and asked if it made more sense for me to get LTD instead (the requirement to apply is that I can’t do the work of my current position, which is certainly true now; to extend it beyond the initial period I would need to say that I couldn’t do any work at all, but that’s not a bridge I need to cross any time soon.)  I started to explain that LTD only pays a certain percentage of my salary, and as I was explaining this, I realized that I wouldn’t earn more at a part time job, and I’d probably earn less.  And the benefits wouldn’t be as good.  And I’d have to commute, and deal with the physical and mental demand of having a job.

BAM!

That’s when it hit me: I might need to sign up for LTD and be on it for a while!  Now, I have some time to figure this out.  I can be on STD for a bit longer, so I will wait until the time gets closer to make a decision.  Tomorrow I’m going to have blood drawn, and maybe my fatigue is just from something simple, like anemia.  I’ve never wanted anemia so badly in my life.  I will hope there’s a fix for this.  But in the meantime, I’ll be reconsidering all of the options I’d already considered.  It’s time to look at this from a new angle.

And maybe buy a lottery ticket.

 

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Leave a Comment » | Decisions, Expectations, Frustration, Job, Limitations, Rants, Support, Symptoms, Thoughtfulness, Unpredictable | Permalink
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Up and down, down and up

December 4, 2011

I never liked roller coasters and I’m ready to get off this one right now.  Really.  No joking here.

I won’t say that I was ok with my illness fluctuations when they occurred over weeks or months, but at least I learned to handle them.  Having fluctuations every day, or even every hour, though, is so much more difficult.  Let’s take the last few days, for example.

Friday morning I felt blah, but I pushed myself to keep my lunch plans with a friend.  That cheered me up, and the fresh air helped a lot, and I felt fantastic for several hours.  By the time I got home I was completely exhausted.  I crashed on the couch for the night, watching tv and knitting.  So, that was a down-up-down-down day.

I felt lousy on Saturday, then felt worse, then felt much better for a while.  I pushed myself to go out.  Unfortunately, I wore myself out and spent the evening and night watching two different movies and knitting.  So that would be down-down-up-down-down.  Lovely.

Today was bad, but I was able to pick myself up for a while and keep plans with friends, then I felt worse, then better, then worse, then better.  So…. down-up-up-down-up-down-up.

How is anyone supposed to adjust that quickly?  Making plans with friends is getting harder and harder.  I had to leave a movie tonight partway through to rush to the bathroom.  This was worse because I was on a date!  I still haven’t figured out how to bring all of this up with him, but that’s a topic for a different post.  In the meantime, I’m just trying to figure out how to not constantly cancel on people.  Blah.

While I’m not working, I need to be busy every day so that I don’t get too lonely and/or depressed.  But it’s hard to make plans when I seem to feel lousy at some point every day, and most days I have a period of exhaustion where I don’t want to move at all.  Last night I didn’t even feel up to typing a quick blog post!

I didn’t like roller coasters as a kid at the amusement park and I don’t like them now.  I can’t wait to get off this one.

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Yes you can: asking for help

December 2, 2011

A friend of mine had surgery this week.  This was planned in advance, so he knew when it was happening.  The recovery period is one month out of work, and then a few more months with certain activity restrictions.  He knew this would be tough, so a few weeks ago, he sent out an email to all of his friends in the area to ask for help.  What does he want?

He asked people to visit with him, by phone or Skype or in person.  He asked people to cook some meals.  He asked people to help him with some errands.  Simple, right?  We’re all very happy to help.  He set up a calendar on a web site that organizes everything, so at any time I can go on there and see which days he needs someone to come by.  I can’t do his laundry or lift things, but I can visit and provide company.  Other people can’t visit in person, but they’ll Skype to keep him company.  We’re all going to do what we can.

And this made me wonder, why do so many of us have trouble asking for help?

Now, the obvious reason is that chronic illnesses are ongoing, so we’d be asking for help a lot.  There’s no simple “recovery” period.  And after all, it’s not like we know when we’re going to have a flare, so we can’t predict when we’ll need help.

But aren’t those just excuses?  Yes, we need to be careful not to be burdensome, but if I were to ask a bunch of friends to collectively do 2 things for me each week, it would be months between asking favors of the same friend.  I’m sure they’d be thrilled to help.  Many have offered.  And let’s face it, even though something might feel huge to me, it’s probably minimal for them.

I’ve always been bad at asking for help.  When the pain in my wrists was so bad that I couldn’t cut my food, I’d just put a big piece of meat on my fork and bite of bits at a time.  I bristled when my mother offered to cut my meat (I was young and still living with my parents.)  I turn down offers of help from family and friends.  I guess I’m just too stubborn for my own good, but I’m working on that.  We all need to work on that.  Dealing with chronic illnesses is hard.  Why make it harder by trying to do everything alone?  Asking for help might make it a bit less difficult.  It’s worth a shot, right?

 

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Posted by chronicrants

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