Chronic Twenties

The other day, I realized it had been nearly a month again since I’ve written here. I don’t have a lot of RA-related epiphanies these days, I guess.

In any case, to find more fodder for this blog, because I believe this is an important perspective that is rarely shared with the world, I finally set up a google alert for the term rheumatoid arthritis.   Now, I get all the news on my disease, straight to my inbox — how convenient, if I’m not in a down-on-myself-because-of-my-health mood.

Yesterday, I got my first google alert on the topic.  And after sifting through a host of information on the the prescription drug market, I discovered RA Guy (http://www.rheumatoidarthritisguy.com/).  This chronic thirty-something writes about his superhero disease status.

His blog is so uplifting.  We are all superheros dealing with this crazy disease that attacks our bodies from the inside out.  Being a superhero is also a good reason for not revealing his true identity — which we have a policy about around here too.

The best thing about discovering RA Guy is his blog roll.  I’m so used to suffering in silence that I never thought to find others and talk.  Thanks for that RA Guy, and thank you google for your little pervasive technologies.

Now, all I need is a clever pseudonym and I can join ranks.

Amongst elders, there’s a commonly understood, but usually unspoken, rule:  Don’t ask a lady her age.

It’s impolite.  It’s unprofessional.  And it makes people uncomfortable.  There are just way too many ways to get the answer “wrong.”

Although I write this blog anonymously, under a banner that clearly states that I’m in my twenties, I don’t like to talk about my age.   As it turns out, I’m more than a little defensive about it.

People look down on twenty-year-olds.  Frankly, when I look around at my peers, I tend to look down on them too.  Maybe it’s resentment, maybe it’s that my chronic situation (among other things) makes it harder for me to relate.   Whatever it is, I don’t appreciate getting lumped in with “young people.”  I don’t feel young.

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What brought this rant on?

The other day, after teaching a yoga class, one of the students made a comment to me about my age.  He said to me, “you’re really young.”

I had three near simultaneous reactions.  At first, I was indignant. I thought, what difference does my age make?  Can’t a 20-something have wisdom to share?

My second response was, “yup.” As I write this I find myself more in the indignant camp.  But at the time, I recognized that I could take it as a statement of truth–though from my current seat, it seems unlikely that’s how it was intended.

The third and final response was more of a non-response.  And this is how I handled the conversation with the student in the moment.  I sort of himmed and hah-ed until he left and I took a shower, and the day carried on.

I’m sure there’s a right response somewhere in the “isn’t it great that I found this healing practice at my age” variety.  But I realized later that the whole thing kind of ticked me off.

I’m angry and defensive.  I’ve been through more than a lot, and while I’m aware I’m not the only one, I want all this crap to mean something.  I want my family drama, my childhood trauma and my chronic status to make me a stronger, wiser person.  Sometimes it just makes me angry and resentful.

Yes, I’m twenty-something.   Please know that I’d prefer not to talk about it.  Ok?

The other day, I received the final survey for a research study I’ve been participating in for nearly three years.  My first thought was, “WAH-AT? There’s no way I’ve been in a study that long… Have I even had this disease that long?”

Clearly, I have.

It’s not a fluke.  It’s not going to spontaneously going away.  I have rheumatoid arthritis.

Thirty months is a long time.  And in that time, the disease has pretty much been tamed by the battery of meds the doc has me on.  But it’s kind of crazy to think how much time has passed since I’ve been diagnosed, since I first got involved in the study.

Since then, I’ve moved three different times; I’ve been the maid of honor in two weddings; I’ve been through two break-ups (one more significant than the other); and I’ve changed careers.

Being the twenty-something that I am, I tend to like to think I can push through just about anything.  Teach five heated classes in a day?  No problem.  Cram a full day’s worth of work into a four hour span?  Got it covered.

Often times, it’s not desire that I lack.  It’s the actual energy.  The yoga makes me feel great; teaching makes me feel great; I even get excited about the consulting work that I do.  But sometimes I just don’t have it in me.

I like to imagine a world where I have the same amount of energy every day, a world where I wake up feel great, work, accomplish and get the rest I need to start the next day the same way.  Back in the real world, I’m fatigued.

It doesn’t always matter how much sleep I’ve gotten, how well I’ve been eating or how much I’ve been exercising.  As a chronic, it’s important to remember that occassionally you’re just tired.  Whether it feels like brain fog, delayed physical response times or more weight on your shoulders, don’t forget that fatigue is real.

When most people think of spring, they think of flowers.  Sometimes people think of allergies.  For a chronic, it’s all about flares.

I don’t know if it’s this way for everyone, but I have to imagine I’m not alone here.  With spring’s sudden shifts of weather — cold days followed by hot, humid days, then more cold — my body gets confused and flares happen.  Often.

Maybe it’s because I do have season allergies too.   Whatever the reason, I’ve been good and swollen for a the past couple days.  Ugh.

The most recent flare seems to be coming to a close.  But at it’s height, my “morning stiffness” was lasting well into the afternoon.  Glad that’s over, for now.

Has anyone else had this experience?  I’d love to know how you can curb the effects of weather on the body!