Well hello bitchiness

December 11, 2011

This recent fatigue is really pissing me off.  Of course, I’ve been depressed too – who wouldn’t be after spending most of every day indoors?  So I’m angry and depressed.  Lovely.

Now, I won’t say that I was a cheerful person before the illnesses because (1) I was 12 before the CIs and (2) I wasn’t always pleasant to be around.  Still, I eventually got past my teenage mood swings, my depression, my hormonal imbalances, my angry outbursts, and whatever else, and I became a fairly happy person.  Sure, I got pissed off and upset, but only when there was a good reason to.  Then I’d address the issue and move on, returning to my usual cheerful state.  I didn’t even get PMS.  People (ranging from my mother to a gas station attendant who I saw often) told me that I was pleasant to be around and that I brightened their day.  I was happy.

Now I feel like a hormonal teenager again, but without the hormones.  I’m pissed off at people when it’s not their fault.  I’m hoping that
someone will ask how I’m feeling so that I can yell at them about how inappropriate it is to ask.  I’m aching to pick a fight with someone, anyone (but hopefully not with someone big and mean.)  I can hear myself being bitchy, and I know it isn’t right, but I just don’t care enough to actually try and stop myself.

I have no doubt that one day I will be happy and cheerful again.  I’m sure I’ll be pleasant to be around.  People will enjoy seeing my smiling face.  But until then, watch out.  You may want to steer clear.  Because I’m pissed at the way my life is going and I’m ready to take it out on someone.  It won’t help, but then, nothing will.

 

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A reading workaround

December 10, 2011

When I was 7 years old, my parents bribed me to read.

I had been asking them to buy me Uno (yes, the card game) and they said that if I read regularly for a month, they’d get it for me.  My mother made a chart and hung it on my bedroom door.  Every day that I did my reading, I got a star sticker.  I could read anything I wanted.  I think I read a lot of Ramona Quimby and Sweet Valley Twins that month.  Remember, I was 7 and this was the 1980s and…. well ok, I admit that now I read the adult equivalent of SVT.  It was fun reading!

At the end of the month I had enough stickers that my parents bought me Uno.  I also had a new-found love of reading.  Uno and reading – it was a good month!  Reading used to be a chore, and now I hated to put a book down.  I’d read after school.  I’d read at restaurants.  I’d read while I walked through parking lots (that one was discouraged.)  I’d read with a flashlight under the covers, long after I was supposed to be asleep.  Suddenly reading was great.

I read through the rest of elementary school and by 6th grade, I’d run out of books to try in the school library.  I made a good dent in the junior high school library’s selection after that.  I read through high school and college, and somehow I even found time to read in grad school (though mostly just on the long bus rides every day.)  I always have a book to read.  I have dozens of books at home, waiting to be read.  I go to the public library constantly.  No, I don’t read all day every day, but I do read at some point every day.  It’s rare that I go for a day without picking up a book.

At least, it was rare.  It was rare until a few weeks ago when the fatigue got especially bad.  Now, I’ve been falling asleep when I read.  I can’t get through more than a few pages at a time.  At night, I fall asleep before I even open the book.  I’ve spent 2 weeks on a book, a good book, and only got through 50 pages.

And then it all changed.  I got through another 50 pages of that book just this afternoon.  How did I do it?  I got the audio book!  I prefer to read, since I’m a visual learner, and I feel like I get deeper into the subject matter when it’s on a page in front of me, but an audio book is better than no book!  For a lot of people, audio books are much easier.  For years, I have had to simply not read large hardcover books.  Thanks to my joint point, I find them too heavy.  I did get a Kindle, but a lot of those books are expensive, and I can’t afford to buy all of them.  What to do?  Viola!  The library has audio books!  I just ordered two more audio books today!  [A shoutout to the Minuteman Library Network.  I go on their web site, pick the book, cd, dvd, etc. that I want, and it gets delivered to any branch I choose, all for free.  If only all other municipal services worked like this!  Plus, their staff is always helpful and pleasant.  I can’t say enough good things about our libraries.]

While I’ll miss reading, I have to admit, it’s nice to zip through a book.  I’m a very slow reader.  I may read every day, and spend hours at it, but it will still take me a long time to get through a single book.  Today, I listened to a big chunk of the book while I took a walk (and I walked longer because of it!), played solitaire on the computer, knitted another section of a scarf, made dinner, ate dinner, washed the dishes, and sorted through some junk on a shelf.  Sometimes I read while I eat dinner, but I couldn’t have read a book while I did any of those other things.

So this is my Ode to the Audiobook.  Having CIs sucks, and there are a lot of things I can’t do now, but every now and then I find a workaround, and it just makes things so much better.

 

** By the way, I’m not suggesting that anyone else bribe their child to read.  The same technique didn’t work on my sister.  I’m just glad it worked on me.

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The 1/2 mile decline: reaccepting old limitations

November 30, 2011

When I moved into my apartment, I didn’t even consider walking to the grocery store.  Even if I could have walked the 1/2 mile there, I knew I couldn’t carry groceries home.  So I drove to the store.

Over the years, I increased my walking.  I finally got to where I could walk that distance.  Then I worked on carrying.  The day I carried a quart of milk home I was ecstatic.  When I carried home 1/2 gallon of milk, I could hardly believed it.  I still drove to the store when I had to get a lot of heavy things, but when I just needed a few items, I could walk!  It even got the point where I didn’t think too much of the walk.  It was an effort, of course, but it was very doable.  As long as I was having a good day, I knew I could do it.

My recent decline has been tough.  I’m trying to continue to get at least some exercise, like short walks and running errands.  Today was 60 degrees and sunny with a slight breeze.  Perfect.  I needed just a few things at the store, so I headed that way.  Halfway there, I was exhausted.  I wanted to come home and get the car.  No, forget that.  I wanted to come home and sit on the couch!  I pushed myself, though, and made it to the store, stopping just before I got there to sit on a bench for a few minutes.  Walking through the store took much more effort than I’m used to.  By the time I paid for my groceries, they felt surprisingly heavy.  I sat on a bench again for a few minutes before I left the store.  Then it was time to trek home.

The walk home felt longer than I remembered it being.  Did the street stretch out?  I just kept putting one foot carefully in front of the other.  I stepped over the tree roots pushing up the sidewalk, felt bad for the 3-legged cat that was meowing piteously, thought about how much I wanted to sit down.  When I got home, refrigerated stuff when in the fridge, the rest was left on the counter, and my butt went to the couch.  I had to rest for a long time to get over that.

I’m glad I pushed myself (well, I say that today; I’ll have to see how I feel tomorrow.)  It felt good to get some fresh air.  My knees hurt less after I’d walked for a while.  I know it was good for me.  But emotionally, it was tough to realize just how much I’ve declined.  It took so long to build up to that simple walk, and now it’s been snatched away from me so damn quickly.  I’m not ready for that.  I could accept that I wouldn’t improve more.  I was ok with that, actually.  No, really, I accepted that years ago.  But I could not,  I can not, accept getting worse, especially not so soon.  I always knew it would happen “someday,” that mythological day in the distant future.  I’m not ready for it now.  Not yet.  So I’ll do the only thing I know how to do: I’ll accept it so that I can fight it.  I may fail, but at least I’ll try.

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I told me so

November 28, 2011

It was hard to admit that I needed to take a medical leave of absence from work.  A part of me knew it was necessary, but another part kept questioning if I really needed to do it.

When my doctor asked me how long I thought I’d need to be out, I said 2-3 months, but hopefully only 2.  I said that to everyone: hopefully only 2.  I even said that to myself.  I was trying very hard to ignore the little voice in the back of my head that was saying I would need at least 3 months.

We talk about the “masks” we wear, the image we try to project for the sake of others.  But what about the lies we tell ourselves?  Denial is a powerful thing.  I have been in denial over many things in my life, from my own health, to the health of loved ones, to job conditions, to sexual orientation.  Denial is powerful, and lately it has had a lot of power over me.

Yes, I knew I wasn’t getting better as quickly as I expected.  Yes, I knew I wasn’t where I needed to be at this point.  I thought about these things, but I didn’t accept them.  That little voice was pointing them out, but I kept ignoring it, trying to believe that the little voice was exaggerating everything, that my symptoms really weren’t that bad.

This evening I spoke with my doctor.  The short term disability insurance renewal paperwork is due next week, and she wanted to see when I would be returning to work.  The original goal was January.  That is looking very unlikely now.  Even typing this out, it’s hard for me to admit the truth.  Telling her everything was extremely painful.  I had to admit my lack of progress, my increasing pain, my difficulty sleeping, my weight gain…. all of it.  Finally, the denial was gone, and I had to admit the truth.  That conversation was excrutiating.

When I got off the phone I cried.  Actually, I sobbed.  I was probably a month overdue for that crying session.  I don’t cry often, but this was a good time for it.  And in the back of my mind, there was that little voice, reminding me that I had really known all of this all along.  It had told me so.  It knew.  I knew.

Goodbye denial.  Until next time.

 

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