Measuring symptom improvement… by way of a 2 year old

December 29, 2011

I knew the fatigue was getting bad when I’d be tired after 12 hours of sleep, then take a 3 hour nap that next day.  Now matter how you look at it, that’s not good.

Now that I’m feeling a bit better (thank you sleeping pills!) I haven’t been as tired and I haven’t taken any naps, intentional or otherwise.  Progress!  Yay!  Still, I know that I don’t have the energy of a “healthy” person, so maybe some of the progress is in my head?

Two weeks ago a friend had a timing conflict and needed someone to watch her kid.  I was so tired every day, but she was in a jamb, and she’s a good friend, plus I wanted to try and push myself a bit, I rested all day, then went over in the evening.  After a bit over an hour, I’d had it.  We’d been sitting most of the time, but I needed to be alert and engaging.  It was exhausting.  Thankfully, my friend’s husband came home a bit after that, and while I still played a bit with the kid, I could let my guard down and relax.  Still, by the time I went home I was beat.

Today I went over to take care of the same kid.  I went in the morning.  I got up with my alarm, and felt a bit tired at the time, but then felt much better as I got ready to start the day.  I had a ton of fun with the kid and wasn’t tired, even after more than two hours together.  I hung out for a while with my friend, then came home and listened to an audio book for a while (loving those audio books!) before I took a 35 minute (yay!) walk, stopping at the library on the way (I’m visiting the library a lot these days.)  I felt great after all of that!

So two weeks ago, an hour with a two year old wore me out completely.  Today, two hours with a two year old left me feeling as good as when I started.  The lesson?  The doctors shouldn’t measure our progress on those annoying 1-10 scales.  They should just put us in a room with a two year old and see how long we last.  After all, anyone who can keep up with a toddler must have at least something going right!

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Dreading the worst-timing-possible interview

December 26, 2011

I am dreading tomorrow’s job interview.

It’s not the interview itself that’s the problem.  I love the organization and I’ve wanted to work there for years.  The thing is, it’s probably going to force me to make some guesses that I don’t want to make.  At the very least, it will force me to lie.

I’ve been on a medical leave of absence from my current job for almost three months now.  When I left, I told them I would be gone three months.  I really believed I wouldn’t need longer, but I was clearly wrong.  I figure I need another month or two at least.  Scarily, it may be more.

I didn’t actively look for jobs while I was on leave.  To be honest, I don’t like my job, but I just didn’t have the energy to look for something else.  Then a friend emailed me that his company was looking to hire, and it’s a position that I’m qualified for.  I had told him many times to let me know if anything ever came up because I would love to work there, so I couldn’t pass this up.  It’s a part-time job, which on the downside means less money, but then again, it would be better for my health.

So what’s the problem?  If they want someone to start right away, I can’t.  Even for part-time work, I’m just not ready for it.  Too many days I feel lousy.  Just going to the job interview will be all the activity I can handle tomorrow.  And when they ask about my current job, which they will, I’ll have to talk in the present tense, as if I’ve actually been doing the work recently.  I will have to lie by omission and not tell them I’m on leave.  When they ask why I want part-time work, I will have to say that I’ve been wanting a better work-life balance.  This is true, but it sure does avoid the most obvious reason.  And if they actually do offer me the job at some point, which is possible, what would I say?  Would I be ready to work?  I just can’t imagine.

The timing of this is lousy.  Up until 6 months ago, it would have been so easy to just go 110% for this job.  Now, I’m not sure if it’s even worth going to the interview.  Someplace in the back of my brain I know that it’s good to keep my options open, but really, I’d rather just hide under the bed for a while.  I know there’s some positivity somewhere in me.  I sure hope I can get it out in time for the interview.

 

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The medicine of a simple visit

December 17, 2011

Knowing that I’ve been stuck at home a lot, my parents came over for a visit today.  They don’t live very far away, but they rarely visit.  Usually when we see each other it is at their house, where I grew up.  Since I’ve been staying closer to home, they came over for a visit with their pooch.

It was a simple visit.  We talked, we took a walk, we had dinner.  I pet the dog.  I played with the dog.  I sat with the dog.  It was an easy visit.  Today was a good day, and I felt up to moving around, which was great.  Having company was fantastic medicine.

When you’re fatigued, in pain, or otherwise stuck at home, remind your friends and family that visits can help.  So many of us get offers of help, but the truth is, I don’t always need help with errands or cooking, sometimes I just need some stress-free, activity-lite time with loved ones.  We all need to be alone at times, but we also all need to be around the people we care about and who care about us.  Sometimes it’s just that simple.

 

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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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