“But you were able to do that…why can’t you do this?”

I’ve been posting a lot about lately about dealing with doctors – time to switch it up a little! 🙂

In the summer of 2012 my husband, kids and I went on a vacation to Florida.  After visiting with my grandpa and aunt for a night, we went to Cocoa Beach for a day and played on the beach (my parents actually used to live there…although I love having them close now, I do miss my free vacation spot that I used to have access to…it definitely beat staying in a hotel!)

The next day we went to Kennedy Space Center.  If you’ve never been, it’s a phenomenally cool place (although it is rather pricey!)  My son was 9 and was a great age to visit there.  We spent the day and had a great time.  On our way back in-land we stopped for dinner.  While at dinner my son convinced me to go back out to the beach for just a little bit before heading to central Florida for the night (we had plans to go to Sea World and Aquatica for the next two days).  I’m completely convinced that I’m made to live on a beach…so it doesn’t take a whole lot of effort to get me to go back for a bit.

As we were leaving the restaurant, I was walking and rolled my ankle.  Not just a little roll.  A “I heard a very loud pop-pop and now I can’t get up” roll!  And I even had tennis shoes on (I usually live in flip flops, but I’d worn tennis shoes for the walking at Kennedy that day)!  And I was literally just walking!  I’ve danced for 20+ years of my life (and in fact was taking contemporary/lyrical class that summer as I do off-and-on over the years) and yet I roll my ankle simply walking to the car from the restaurant.

My husband drove us across the street to the drug store and went in and got me some instant ice packs.  I couldn’t stand to disappoint my kiddos that were planning on time at the beach, so we went ahead and headed to the beach – me with an ice pack on my ankle and barely able to walk.  Just in case you think I might be exaggerating it just a smidge, here’s what it looked like the morning after it happened.

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The next day we went to Sea World and I took one for the team and walked all over Sea World.  The day after that, we went to Aquatica (Sea World’s water park) and yep, I sucked it up through that, too.  It was a really good thing that we did Sea World first because after walking around Sea World for the day I couldn’t get tennis shoes on the day we went to Aquatica…which worked well because we all just went barefoot! 🙂 The following day we traveled back home – airports and airplanes (wearing flip flops – couldn’t get that tennis shoe back on!).  Not comfortable at all!

So what does this story have to do with my blog on autoimmune disease, chronic pain & chronic fatigue?  Because I spent those two days at amusement parks and a third day going through a major airport and when I got home that night and the next day, all I wanted to do was sit on the couch and do nothing.  I didn’t want to go up and down stairs.  I didn’t want to run around and find whatever it is my kids were looking for.  I didn’t want to stand and cook.  I didn’t want to do anything that required me to move or put weight on that ankle.  But the problem was that I had spent 3 days walking around on it – my family got used to me being able to walk around and do it.  And they didn’t really understand why I couldn’t continue to do that once we’d gotten home.

Chronic pain and fatigue is often the same.  People see you suck it up and function for events or periods of time and then get frustrated when you can’t do it afterwards.  Just because I managed to limp through Florida in order to not be stuck sitting in a hotel room while my family enjoyed their vacation didn’t mean that my pain and injury was any less severe.  In fact, I more than likely did more damage to my ankle and increased the time it took to heal by doing that – short term gain (fun with my family) for long term loss (longer healing time).

In my head, I knew what my plan was – suck it up and get through the vacation and then sit with it up and rest it until it healed when I got home.  The problem was that everyone else saw the first part of that plan in action and assumed I therefore didn’t need the second part!  And that was with a very visible (bruised, swollen, nasty looking ankle sitting up on the ottoman) injury…it’s even more frustrating when the recovery period is for invisible struggles because those around me can look at me and visibly see why I need to recover!

When I make choices about what I’m going to spend energy on, when I’m going to suck it up and put my happy face on, it sometimes backfires on me because then I frustrate those around me when I can’t maintain it.  “Well if you could do it for that [day, event, person, group] then why can’t you do it now?”  Everyone makes choices in what they spend their time and energy on in life, but those of us with chronic pain and chronic fatigue have less energy to start with – our choices must be that much more selective.

And our recovery time is much longer than other people experience.  Just like I had to wait longer for my ankle to heal because I’d walked on it for those three days, each time I wear myself out I have to wait longer to bounce back.  I led a workshop for teachers at a local university last Friday.  I was so physically worn-out from that experience that it took me a full 2 days to recover from it.  I actively taught a group for 6 hours and it took me 2 days to recover.  And those two days were not much of a picnic for those around me as I exhibited my cranky self during that recovery time.

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