Sunday, July 14, 2013

Living with invisible diseases

You are sitting there, reading a book and drinking a cup of coffee.  You take the last sip, and think about getting up to get a refill.  Most people either jump right up with no thought except extending the caffeine pleasure.  Some will linger feeling lazy and wishing they didn't have to move.  But then there is a group of us who look like the latter on the outside.  We look like we are lazy and just not wanting to move.  If you could peek inside our brain you would see a very different scene.  Inside we are thinking, "I just got comfortable, my hips have settled and are not hurting anymore."  "How much do I really want another cup of it worth it?"  Then we take the plunge and get up.  The first pain starts in our feet.  We feel every joint in our feet creak and hurt as we plant them on the floor.  Next it is the knees.  Trying to straighten up hurts in the hips and lower back.  We know we look silly, afterall, we are only 20, 30, 40 years old and we look like our grandmother.  Once we get going, we are usually only aware of the stiffness, not the pain.  Then we get to the coffee pot and we have to extend our arms, the shoulders creak and cramp, the elbow hurts, the fingers take a minute to relax enough to grasp the handle on the pot.  We get our coffee and start the whole process over.  For just that short amount of time that we were still, the joints have stiffened again.  This whole process feels like we have run a marathon.  We are usually winded by the time we sit back down.  Our thoughts have now gone all over the place.  It is difficult to sometimes remember what we were doing before the coffee urge took over.  This difficulty to remember is not the typical, "I walked into a room and forgot what I came in for."  It is sometimes a pure panic because we were so wrapped up in our bodies just trying to cross the floor for the coffee that all else was lost.

Usually as the day progresses, movement becomes easier, but it is never so easy that it is not in our thoughts.  Every time we rise, we are aware of the effort.  But now a new issue arises, the lack of energy.  It is not a lack of motivation.  It is not a lack of initiative.  It is not a lack of desire.  It is quite simply an empty tank.  So much energy is used in doing the simple daily things, that often by mid afternoon, we are exhausted.  We need a nap to continue our day.  Plus, as the day turns into the night, the joints begin to stiffen once more.  So more energy is needed for the simple movements.

Yes, this is a normal day for many of us.  This is not a busy day with lots of appointments, or the cleaning the house day, or the running errands day.  This is the simple day where you stay at home.  So imagine adding all these other activities to our day.

Sometimes we snap at people or are not the most pleasant. Some days we appear to be impatient or maybe even irrational.  Sometimes we are teary for no apparent reason.  Some days we just seem to be depressed.  Well, think about it.  Wouldn't you?  Most days, you aren't even aware of anything going on with us.  We have become great actors.  Most of us have found that given the choice to be negative or positive, we choose positive.  We paste smiles on our faces, we look on the bright side and realize we are alive and things could be so much worse.  We search for people who help us get outside our own bodies and think about the world and other people.  We look for ways we can be useful and productive. 

We are your sons, daughters, spouses, partners, neighbors, co-workers and friends.  We are the ones with invisible diseases.  Don't pity us.  Just stand beside us as we stand beside you.  And?  If you happen to notice our coffee cup is empty and you are getting up anyway?  Would you offer to refill it for us?  Thanks, and we will reciprocate later in the day when we aren't so stiff!

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