I Can’t. I’m…Busy.

The second half of this week, my body decided to completely rebel against the travel, wedding planning, and general, joyful craziness that has consumed the summer.  I crashed.  Hard.  For the last two days, I’ve barely been able to crawl out of bed.  The energy required for me to type these words is monumental.  But in the moments when I can, it got me thinking.

As usual, the thoughts start with my list.  All the things I need to get done.  How I can’t afford to be sick.  Usually, that leads “Type A” me to a spiral of frustration and emotional distress. I end up canceling plans, apologizing to my family, and feeling generally guilty because I “couldn’t do anything”.

I took a different approach yesterday.  Instead, I looked up the definition of busy.  Here’s what Merriam Webster had to say:

busy   adj \ˈbi-zē\

busi·er busi·est

Definition of BUSY

1a: engaged in action : occupied b: being in use <found the telephone busy>

2: full of activity : bustling <a busy seaport>

3: foolishly or intrusively active : meddling

4: full of distracting detail <a busy design>

Hmm.  Engaged in action.  Yep, my body sure is, housing my out-of-control immune system.  Full of activity? Pre-diagnosis, I did two half-marathons, and had far more energy after each one than I have now.  Intrusively active is my favorite, because duh. Nothing about auto-immune diseases is non-intrusive.  And let’s see.  Full of distracting detail, as in a busy design.  Like the worst floral, plaid, stripe combination in HISTORY, done on VELOUR.

These four definitions reminded me that I am also busy, even when I cannot move an inch.  And I realized that it’s my job to remember all my body is dealing with, even when I feel to myself like I’m doing nothing.  So the next time I don’t get to something, my reason should reflect that instead of unnecessary guilt or shame.  I indeed got busy – just in my own way.

Now if you’ll excuse me…my tea, heating pads, and I are very busy this afternoon.

The Spoon Theory

Ever wonder what it feels like to be sick every day?  The spoon theory explains it brilliantly.  I don’t know Christine Miserandino, but I thank her tremendously for explaining the effects of chronic illness on our daily lives.  Thanks also to Niki at RA Chicks for sharing the link!

I wish you all lots of spoons today and everyday!

The RA Rollercoaster

I’m a huge fan of rollercoasters.  My first “big” one was the Gemini at Cedar Point, which I tackled at age 8.  I was immediately addicted to the whole experience: pre-ride anticipation and fear of the unknown, alternating sensations of queasiness and exhilaration while on the track, and afterward, the pure adrenaline rush and that “veni ,vidi, vici” feeling.

Life with RA feels a lot like that.  Last Wednesday, I got my infusion after a two-week delay (a story for another post).  Finally, on Thursday morning, there was a sliver of light at the end of my flare tunnel.  After living with so much pain, I was ecstatic just to engage more fully in everyday life.  I was finally stepping out of the fear and queasiness of the ride, and into the exhilaration.

With tolerable pain levels and a bolstered mood, I spent the weekend enjoying both my productivity and downtime.  I grocery shopped, cooked, did laundry, shuttled Bear to practices, baked a birthday cake, spent a few hours at Disney, and enjoyed a meal with wonderful friends from Michigan.  Nothing too taxing or crazy – just a lovely and normal weekend.  (Okay, I know Disney isn’t “normal” for most, but I’m blessed to be an annual passholder that lives an hour away.) Overall, I suspect these activities sound similar to those that filled your weekend.

Last night, the RA rollercoaster track took an unwelcome turn, as my pain returned.  Over the last few days, I consciously tried to balance my activity with rest, but it wasn’t enough.  The physical pain is tough, but the emotional pain can be even tougher.  This morning, I find myself sad and frustrated that my body responded to “everyday life” as it did, and afraid that I may never break the cycle.

Since this disease is chronic, it’s easy (yet dangerous) to think of RA as a neverending rollercoaster.  If we do, we miss out on the end — the adrenaline rush of life.  Instead, I’m choosing to treat each day as a new ride, balancing my constant fear of the unknown with things I can cheer and conquer.  When I was in high school, my friend Paula and I rode the Gemini 23 times in a row.  Thirteen months past diagnosis, I’ve shattered my own consecutive ride record. I’m competitive, to be sure, but RA is one rollercoaster I’d much rather get off for good.

Lessons from Rocky Balboa

“It ain’t about how hard you can hit. It’s about how hard you can GET hit and keep moving forward. How much you can take, and keep – moving – forward.”
Rocky Balboa

 

I’ve seen this quote, and its General Custer and Vince Lombardi variations, many times, but it really speaks to me now.  You see, I’ve been a hard hitter most of my life (metaphorically speaking, of course).  Proactive, type-a, always pushing myself to be and do more.  This aggressive approach has served me well, and I’m proud of my accomplishments.  I’ve had some adversity, like everyone, but I’ve rarely felt a situation was out of my control.

 

Since developing RA, and especially over the last 6 weeks, the tables have turned.  I’m taking right hooks and haymakers every minute…

 

In late December, I began having a major “flare”, which is RA-speak for increased levels of swelling and pain.  This one, the worst I’ve had in the year since my diagnosis, has affected every joint in my body.  Even with my usual RA drug cocktail, strong pain meds, lots of rest, and Ironman Muscle Spray, I cannot escape the pain, even for a minute.  

 

The flare has caused me to miss some work, though my ability to work virtually much of the time has limited that (BIG thanks to my company and my great team!!!).  It also landed me in a wheelchair during a family outing, and even forced me to reschedule a planned weekend in Las Vegas.

 

As I fight, Rocky’s quote is helping me refocus my energy, strengthening me.  Instead of hitting first, I’m learning to absorb punches, so I can avoid a knockout.  I keep thinking of the scene in Rocky IV, when Rocky encourages Drago to keep hitting him, gaining inner strength from the onslaught.

 

 

I don’t think my victory will end a Cold War :), but I’m borrowing this approach in my battle with RA.  I feel stronger emotionally every day, and am making forward process (like starting this blog), despite getting punched daily by the disease.  Hopefully, the 12th round bell will ring soon on this flare, but I know there will be another in the near future, and I’ll again call on the Italian Stallion for inspiration. 

RA and the “Red Car Syndrome”

I’m generally amazed at the phenomenon known informally as “red car syndrome”.  The concept goes that you buy a new car, and suddenly, you start seeing that same car everywhere you go.  The others were always on the road, but they didn’t have specific meaning to you, so you didn’t notice them before.  Because we have so many messages coming at us every second, we must filter based on what’s important to us, and we do it in every aspect of our lives.

In business, sales/marketing professionals like me spend lots of time working to reach prospects with “active pain” – in other words, when the prospect has full awareness of a problem for which we have a potential solution.  This gives us the best chance of getting past the prospect’s filter and getting a response.

For the last year, RA has been my “red car”.  Sure, it’s not as glamorous as the shiny Corvette my son wants in 10 years :), but now that I am painfully aware (literally) of the disease, I see information about it everywhere.  Until I started having suspicious symptoms in late 2009, I had no idea what RA really was, and I missed the signals in my everyday life.  These days, I see RA references peppered throughout my regular activities:

  • I’ve subscribed to Cooking Light for 10 years, but never noticed the monthly Enbrel ads, which I now review regularly.
  • I’m hugely addicted to Law & Order: SVU, and no, I’m not ashamed to admit it.  When I work from home, I often have it on in the background to keep me company.  Almost every episode contains an ad for one of the biologic treatments, usually Enbrel or Simponi.  Of course, these ads now get my full attention.
  • Last night, I was playing the CSI: Deadly Intent Xbox 360 game (notice a theme in my interests?), and had to research a pill found at the crime scene.  When I looked it up in the medical database, I was shocked to see that it was Methotrexate.   The game explained that it is a drug commonly used in treating certain cancers and autoimmune diseases, and that it’s available in pill and injectable form.  Of course, I knew that, because I’ve been injecting myself with it every Monday evening since March 2010.

I’m not self-centered enough to believe that these messages have just started appearing since I was diagnosed, but wow.  I went from blissfully unaware of the red car to being run over by it daily.  It’s truly shocking to realize how much information is available to us, once we have the capacity to see it.

Where Did This Blog Title Come From?

Why “Rude Awakenings”?  Well, as anyone with RA can tell you, mornings are notoriously tough.  We wake up stiff, swollen, and sometimes, completely unable to move.  It generally takes me 3 hours to feel as limber as I will for the day.  

Since I have a six year old son, a full-time job, and an active dog, it’s not realistic for me to lie in bed until 9 or 10 (though believe me, I take advantage of that opportunity whenever it arises).   So, I’ve found another way to start my mornings.  I often set my alarm hours before I need to start my day.  Trust me, this is a big deal given that I’m the farthest thing from a “morning person”.  While I wait for my body to catch up to me, I meditate.  I spend the time breathing deeply and focusing on three blessings in my life.  It’s turned the rudeness my body delivers in the morning into a daily renewal of my spirit.

Meditation is certainly known to be a beneficial exercise, and is something that many people engage in, so it’s funny that I found my way into a regular practice through illness.  I guess discovery often works that way, so I’m trying to keep the lesson to apply elsewhere.  Positive things can arise from any situation – sometimes we just have to look a bit deeper to find them.