What’s normal?

July 25, 2012

For a long time I didn’t realize that it wasn’t normal to go for a day or more without pooping.  After all, that’s just not something that people talk about.

It’s like when I started getting my period, and I didn’t realize that it wasn’t normal to be soaking through a heavy pad every hour or two.  I just thought the other girls were somehow better at running to the bathroom in between every single class.

Then there were the years when I didn’t realize it wasn’t normal to be getting diarrhea at least once a week.  Well, I guess I knew it wasn’t normal, but I didn’t know it was a problem.

And of course I knew the pain wasn’t normal, but I believed the doctors when they said it would be normal for me from now on.

I definitely knew the fatigue wasn’t normal, but it became such a part of my life that I forgot how abnormal the minor fatigue was, because it still felt better than the more moderate or severe fatigue.

For far too long I thought it was normal to listen to doctors and blindly take their advice.  I was right: it’s normal.  But it shouldn’t be.

I assumed it was normal to not see faces in dreams.  Or to be unable to picture my best friend’s face.  Or to describe my mother.  Or to not recognize well-known acquaintances a week after last seeing them.

It was too easy to think that my discomfort in standing still for more than a few minutes was normal.

I can’t believe it, but I used to think it was normal, or at least not abnormal, to be literally unable to get out of bed for a long time in the morning, to be falling asleep all afternoon, then to become wide awake every night around bedtime.

Like so many, I thought it was normal to put up with horrible from side effects from drugs, even if we couldn’t be sure the drugs were helping.

I knew it was wrong of people, but I thought it was normal to be disbelieved.  Too bad I was right about that one too.

Ditto for being underestimated.

Being told by doctors that there was nothing to be done and I should just lived with it came to feel normal.

Staying home while my friends went out became normal.

Lying to people and pretending to feel better than I really felt seemed normal.  This should never be normal.

After a while, forgetting events in my life, having trouble keeping a train of thought, and having trouble with things I used to find simple, like basic arithmetic, started to seem normal.

Worrying about money and health insurance and red tape and bureaucracy became absurdly, obscenely normal.

Sadly, seeing my family and friends constantly worry about me, for me, seems almost normal.

I can hardly admit it even to myself, but accepting my illness and giving up on the fight, being willing to watch it all get worse and believing there was nothing to be done, seemed normal.

Whatever else this all is, no matter how you define the word, it is not normal!

There is no normal.  Question everything.

Accept this and you’ll be ahead of the game.

4 Comments | Educating, Expectations, Frustration, Healthcare, Milestones, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

Missing my own anniversary

July 23, 2012

When I started this blog last July, I wrote every single day for months.  If  I missed a day, I wrote two posts the next day.  I averaged one post each day for a long time, always making it a priority.  And then the fatigue got worse.  The downslide started by missing a day here and there without making it up, and it quickly snowballed to missing several days at a time.  At some point this began to feel acceptable, and then even normal.

Earlier this week I felt absolutely lousy and wasn’t able to leave the house for two days.  My arms were weak, and trying to type or hold
the tv remote or hold a book took a huge effort.  I made the mistake of trying to shower once…. what was I thinking?  And in the midst of that, this blog’s anniversary just passed me by.  I had long since given myself permission to ignore the blog on the days I felt bad or had nothing of special interest to write, and the big day came and went, the huge print in my calendar completely unnoticed.

Most of you know how it is.  We miss friends’ weddings and birthdays.  We lose jobs and we lose significant others.  We miss out on life.  But somehow, a new day comes around, with a new chance to maybe do something fun or interesting or important.  So with that in mind, I’ll try not to dwell on the missed opportunities, of which there can be so many, and try instead to focus on the good moments and the joy they bring.

But don’t worry, I’ll resume my regular ranting soon enough!

2 Comments | Expectations, Frustration, Limitations, Milestones, Rants, Raves, Unpredictable | Permalink
Posted by chronicrants

Stairway success

June 4, 2012

As I carefully avoid gluten and dutifully do my physical therapy exercises, not to mention generally taking care of my body, I’m trying to be aware of the small improvements.  I’d love to wake up tomorrow and feel fantastic, but I know that won’t happen, so I want to be realistic about small wins.

Today’s small win is against my staircase.  I live on the third floor of my apartment building.  I only considered a third floor apartment because there was an elevator in the building.  Of course, when the elevator breaks down (which happens more than you’d think) then I have to take the stairs.

My knees started to bother me on stairs and hills many years ago, probably around 1999.  Earlier that year I’d climbed the stairs up La Sagrada Familia in Barcelona – I later discovered it was about 450 stairs.  By the next year, a single flight was incredibly painful.  As I’ve been strengthening my muscles, I’ve hoped to be able to climb more stairs without feeling like my knees are filled with jelly.

The goal was never to climb 450 stairs again.  I mean, I wouldn’t complain if I had that option, but again, I’m trying to be realistic.  I figured that if I could climb the stairs to my third floor without any pain, that would be amazing.  I have been working on this for a while now.  I won’t say that it’s completely painless, and I don’t even try it when I’m carrying anything heavy, but when I reach my floor, I can actually walk down the hall without limping, and within a few minutes the aches are gone!  Even better, I can get to the third floor without that jelly feeling!  And for the first time in the 6 years that I’ve lived here, I can now climb all the way from the 1st floor to the 3rd without having to stop and rest on the way up!!

I’m not running up 5 flights of stairs, I’m not looking for stairs instead of elevators everyplace I go, and I’m not choosing the stairs when I’m carrying extra weight, but for me, this is a WIN!

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

6 consecutive days of physical therapy!

June 3, 2012

I’ll admit there were times I just “didn’t feel like” doing my exercises.  And yes, there were days when I legitimately felt like shit.  And sure, there were days when I felt lousy and probably could have pushed myself to do PT, but moving really was tough.  Of course, there were also the days that I “meant” to do it, but somehow never got around to it.

And then there’s today.

When I started going to physical therapy a few months ago, I decided to make more of an effort this time around.  I printed out a calendar from the web, and I bought stickers.  Just like when I was a kid, I got a sticker every time I did something.  In this case the reward isn’t some toy, it’s my health.  It’s easy to forget that, of course, because the reward isn’t immediate, but the truth is, I’m starting to feel the PT working.

I’ve been pretty good about doing the exercises at home on the days I feel well.  Sure, I’ve skipped a day here or there, but doesn’t everyone?  But yesterday I looked at the calendar week by week, and noticed that I mostly do the exercises 2 or 3 times a week, sometimes 4, and that just isn’t good enough!  I also noticed that I was already doing really well, so that pushed me to keep going.

And then there was today.

Today is the kind of day when I would normally have skipped PT.  I left the house a bit earlier than usual.  I had a busy afternoon.  I was busy and productive at home.  I forgot about the exercises.  Then I was having dinner and I had to digest.  But I pushed through, and at 9pm, I did it!  I broke my own record and did PT exercises for the 6th day in a row!

Now the pressure’s on.

I’m writing this in a public place so that maybe I’ll feel even more motivation to keep going.  I’ll give myself days off when I legitimately don’t feel up to PT, but otherwise, I’m pushing through.  Wouldn’t it be amazing if I could do PT tomorrow and complete and entire week?!

So not only is my posture getting better and my muscles getting stronger, but I’m feeling damn proud of myself, too.  Woo hoo!

4 Comments | Decisions, Medication, Milestones, Raves | Permalink
Posted by chronicrants

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