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!

Friday, July 5, 2013

Empty Nest...Fear or Joy?

Last week I had both my children in my home.  This is an experience which is starting to become special.  Especially since my daughter will be leaving for Africa in 46 days.  We were all in the car and I uttered this statement, "I am no longer responsible for anyone."  A moment passed as I really digested that.  It is strictly true.  Allie is 18 and Stephen will be 21 in September.  Then Stephen piped up, "And how are you feeling about that?"  At the moment I was able to answer honestly that I was actually looking forward to being only responsible for myself.  Of course I have not gotten to this point easily.  Many of you with children still in your home are probably surprised by this statement.  Sure there are days you yearn for the day that no one is relying on you or you wish this teenager would get out of your house, but deep down you can't imagine having an empty nest.

I have been lucky in that Jack has never let me lose sight of him or our marriage.  We have nurtured our marriage and taken time away from being mommy and daddy from the very beginning to be man and wife.  He has encouraged my individual pursuits.  Many women and men lose themselves in parenting.  Their whole persona becomes Mommy or Daddy.  Then when the kids leave, they are truly at a loss of who they are/were/want to be.  So I am blessed that Jack has helped prepare me for this day.

All of this is not to say that I am not nor will I be sad.  I am 48 years old and my parents are still sad when I leave after visiting them.  I will miss all the things that being a Mommy to Allie and Stephen entailed.  I will miss hearing about their daily joys and struggles.  I will miss the times we talked in the den or at the dinner table.  I will miss the smiles, hugs and kisses.  Yes, I will miss them.

But, I look forward to watching the fruit of our labor grow and ripen.  I love the man that Stephen is becoming.  He came back from Chili looking just a little bit more mature.  He is facing adult situations and sometimes succeeding and sometimes not.  I hurt for him, but am fascinated by the process of him coming into himself.  He is a good person with a great, sincere heart.  I am anxious to see what he will do next.

Allie is an incredible young woman.  She is embarking on a journey that few adults would take on.  Her bravery from a wee little thing has always astounded me.  She is going to grow and change in ways that I cannot even imagine.  And for the first time, I will not have a front row seat to experience this with her.  I will have to wait to hear about it.  That is going to be hard.  I will miss that.  But I know that the woman who comes home next April from Senegal is a woman I will be thrilled to know and love.  Her huge heart, her caring spirit, and her fabulous sense of humor will still be just may be even more.  Just like Allie.  She is and always has been more.

This week I have had a taste of the empty nest.  Allie has been at camp where no contact was allowed, and Stephen has moved back to Boone.  I have enjoyed the freedom of jumping in the car to go shopping with my friends without a thought to who needed dinner when.  I have enjoyed the afternoons when Jack got off early to spend knitting and listening to him read to me.  I have enjoyed the collaboration on dinners and grocery shopping.  Yes, there are many things I look forward to this upcoming year. 

As Stephen and Allie go out into this world, they go with my heart.  I will always be near and ready for a call.  But I will also be going out into this world.  I will be pursuing new interests and enjoying old interests.  And when we are all under the same roof again, I look forward to sharing with them as well as listening to them. 

Yes, this year brings lots of new adventures.  I will not let fear hold me hostage.  I will live this next stage in life to the fullest!