Chronic Twenties

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!

In yoga, we talk about creating space between breaths.  As a chronic, I’m all about creating space between flare ups.  The space between is the sweet spot.

It’s what I try to remember when I’m uncomfortable in the morning. There’s space between pain and swelling.  There’s space between the meds and relief.  There’s always a space.

Lately, I’ve been fortunate enough to have lots of space between my discomfort.  It’s interesting.  When there’s a good deal of space between the pain, you can almost forget that you’re chronic.

Unfortunately, it doesn’t go away that easily. While we can enjoy the space between, we must be prepared to live through wherever we are, whatever we’re feeling.  You can look to the space between for hope.

I had a unique experience the other day.  I was talking to a yoga student before class, and she was telling me that some days it’s just harder to get there, to practice. Was she hinting at a chronic condition? 

Either way, I empathized with that.  Practicing in the morning, when my RA is flaring up is incredibly challenging.  So to encourage her for coming, and to let her know she could nurture herself as much as she needed to in her practice, I told her about having RA. 

The woman I was speaking to was considerably older than I.  She had kids, a family, and she said to me, “Wow.  You’re my hero, that you could get up and be here with that disease.” 

I was happy that sharing my story did encourage her in her practice.  She then shared that she also has arthritis and it can be hard. 

Now, I’m no hero, but the whole experience got me thinking. 

• For all the people getting up in the morning, and walking to the bathroom, even when it hurts to press down on your feet, you’re my hero. 
• For all the people respecting the fact that Chronic physical abilities change daily (as does everyone else’s) and knowing when to rest, you’re my hero. 
• For all the people playing through pain or fatigue induced brain-fog, you’re my hero.
• For all the people participating in research studies to make this disease less prevalent, painful or for an eventual cure, you’re my hero.

It feels good to be someone’s hero.  Whether or not you completely believe it, try to acknowledge your strength in getting through this experience.  RA is not a human universal, but being chronic another challenge to the randomness of existing.

I write this blog anonymously to avoid mistreatment at the hands of potential employers and clients, or anyone really.  But the truth of the matter is, I live my life very much in public.  The majority of the people who know me, know I have this disease.  The majority of the people I interact with regularly know.

They know because I told them.  And I often worry that when I speak the words, “I have RA,” I’m condemning myself in their own mind.  That I’m altering their opinion of me.  That’s, of course, if the person or people even understands the disease.  Others, just think it’s a play for sympathy, which also alters their opinion of me.

From that perspective, it’s easier to keep secrets.  Guard your public image.

Internally, I find it feels better for the people in your life to know your whole truth.  And if you’re open about it, people can support you when you need it.  Who knows? Maybe you’ll bond with someone over your Chronic status.  I did.

But whether you decide to go public or keep it locked down, it’s your decision.  You can keep you disease between you and your doctor, or you and the world.  Don’t let anyone tell you otherwise!