Getting back the unintentional smile

December 15, 2011

This past month has been a real bitch.  Fatigue sucks.

One of the hardest parts has been feeling so down all the time.  Sometimes I couldn’t tell if I was sad or tired or depressed.  I knew I didn’t have my usual pep.  I’m generally a happy, cheerful person, and that was definitely gone.

Today should have terrible.  I over-exerted myself last night and went to bed too late.  I was woken up very early by outside noise, and forced to get out of bed.  I should have been a mess, but I felt ok.  I actually felt pretty decent.  How odd.  It took me longer than it should have to get out of the house, but I tried not to pressure myself too much, and hey, at least I made it out before lunchtime!  I took a quick walk down the street to the library and CVS, then came back home for lunch.  And I wasn’t exhausted.  Weird….. Good… but weird.  Even stranger, I noticed random people on the street smiling at me.  A few made random comments (Good morning. Did you see what that driver was doing?)  I didn’t feel any happier, but I did feel that the cloud was starting to lift.  Maybe strangers saw it too?

I really needed to do something about Prednisone boobs, so after lunch I drove to a store I like that carries unusual sizes and tried on everything they had that was an option.  I should have been exhausted, but I wasn’t.  I was a bit tired, but ok.  I made friendly chit chat with the woman helping me.  Hmm… that feels more like me.  It felt good to be friendly and pleasant again.  And she was pleasant back.  And hey, I was smiling!

On the way home I stopped for groceries.  It was late afternoon and the store was getting crowded.  I took my time finding the right items, asking a clerk for help, trying hard to make sure I’m keeping a healthy diet (ugh.)  The clerk kept apologizing for taking so long to check in the back, for making me wait, for not having the item, and I kept assuring her it was fine.  I didn’t care.  I wasn’t in a rush.  Woah, it’s like the old me!  Not rushed (unless I had to be) and patient.  The checkout lines were long, but I was in no hurry (though beating rush hour would be nice.)  A new register opened up and the cashier asked me to come over.  I said not to worry, that I was fine waiting, and that the woman behind me with the very full cart and the obviously-bored child go ahead.  She looked incredibly grateful.  I felt good.  Hmm, I wouldn’t have done that a few days ago.  Ok, I couldn’t overlook that one, something was definitely different.

By the time I got home I was feeling it: I was tired.  Still, it wasn’t the fatigue I’ve been feeling lately, just the old kind of tired.  I sat and rested for a while.  I listened to an audio book.  I ate dinner and watched a movie and now it’s about time for bed and I feel… OK!  I FEEL OK!  I want to shout it from the rooftops.

This might not last.  Maybe tomorrow I’ll feel great, maybe tomorrow I’ll feel horrible.  I’m just so grateful for today.  These good minutes, hours, days, weeks, and sometimes months are such a gift and I’m so grateful for them.  Did I say that already?  Well it’s true.  Thank goodness for today.  I would have survived physically, but mentally and emotionally it was getting really tough.  I feel renewed.

I just hope it lasts.

And every day that this lasts, I will use it.  I will cross off items on my to do list, I’ll write, I’ll clean, and more importantly I’ll help others.  Maybe I can’t do volunteer work at a charity or help a friend move, but I can let someone cut ahead of me at the grocery store, and for now, that’s enough.

 

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Thinking about how to think

December 13, 2011

Do you think?  Do you use your brain?

I used to believe that if I didn’t have a job, my brain would atrophy, that it would grow weaker and weaker and turn to mush.  Then when I quit my job a few years ago, I found out that I was wrong.  I wasn’t using my brain in the same way, but I was still using it.  I was volunteering and reading and having deep conversations with friends and acquaintances.

This time it’s different.  This time I feel lousy.  I watch a lot of tv.  I read less.  I talk to people less because I don’t feel up to it.  I can’t volunteer.  And to be honest, a lot of the time I just don’t want to think.  It feels like too much effort.

But then over the last few days I’ve really used my brain and it feels GREAT!  First, I read a book (well, listened to the audiobook) about the dumbing down of American women.  Men are being dumbed down too, I’m sure, but this book focuses on women.  The author made a lot of great points and really got me to think about things.  It was wonderful.

Then today I helped a friend with some basic accounting.  He started a small business and didn’t know how best to keep track of his income or expenses.  Since I’d done some accounting before, I volunteered to help.  Last week got organized and I showed him the basics.  He entered all of the data into his system, and today I showed him how to do the rest.  It was so wonderful to be using that part of my brain again!  I hadn’t thought about anything accounting-related in years (unless you count my own finances, which are sadly very simple.)  Every now and then we came across an issue that I wasn’t sure how to handle, so I had to think, to reason it out, and to come up with a solution that was easy for my friend to continue in the future, made good accounting sense, and of course was straightforward and legal.  It felt so good!

I’m still going to watch way too much tv as I sit on the couch feeling weak, but I know that I also need to find more time to really think  about difficult situations, to reason things out.  I’ll have to start doing crossword puzzles or sudoku or something.  It really doesn’t matter what I do, but I have to use my brain.  I’ve only been out of work for a couple of months, but I can already feel the decline.  I hope we can all find things that work for us, things that make us think!

 

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2 Comments | Expectations, Isolation, Job, Limitations, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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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Posted by chronicrants

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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