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The Daily Battle

Posted Oct 09 2012 8:56pm
I was thinking (again) today about how every single thing I do every single day is such a struggle and requires such a huge effort of will.  No one else - not even the people closest to us - could possibly understand what it is like for us, how every moment of every day is such a battle and requires so much effort.

Getting up in the morning is a battle.  I actually sleep quite well, thanks to medications to correct my sleep dysfunction , but I am still never ready to get up in the morning.  I force myself up out of bed, thinking of all the things I need to get done.

Getting up from my nap each afternoon is an even bigger battle.  By the time I lie down after lunch, I am usually completely exhausted, even if I slept a solid ten hours the night before and wasn't very active in the morning.  I need that nap; it would be physically impossible for me to keep going.  And it does help.  But getting out of bed after I wake up is excruciating painful.  Only the thought of needing to pick up my son or whatever else I need to do that afternoon finally propels me up.  Some days, like today, I feel as if my entire body has been filled with wet cement while I slept, as if my limbs literally weigh too much to lift them up off the bed.

Getting up off the couch to make dinner every evening is a huge battle.  By late afternoon/early evening, I am completely worn out, in spite of the nap (it's even worse without the nap), but I know I need to feed my family, so I force myself to get up and get moving.

Getting up from the table after dinner to help clean the kitchen is a battle, but I know my husband hates doing dishes, so I try to help as much as I can.

And every single step in between, all day, every day, is a battle, a struggle.  Just trying to find the energy to keep going each day, to do the minimum of what needs to be done, is exhausting in itself.  And I'm one of the lucky ones!  I'm fairly well off (in CFS terms), thanks to 10 years of tirelessly searching for effective treatments (and finding some!)  I know there are plenty of people with ME/CFS who are much worse off, who literally can't get out of bed or off the couch, who couldn't even dream of making dinner for their family.

And yet, the Social Security Administration thinks I could work full-time.  That is so crazy, it is laughable!  I saw that one of the early reviewers of my SS disability application misunderstood all the diary pages I included, with ratings of how I felt each day.  On average, I am somewhere around 2.5 on my scale of 1 to 5 (one being good; 5 being badly crashed), so they concluded I feel good most of the time.  So, I compared my own scale to the one that Dr. Bell developed for measuring disability .  My 1 (i.e. very good) is about a 55 on Dr. Bell's scale - that roughly compares to being able to do 55% of what I could do before I got sick...and that's on my best days (which are rare)!  I often think that if a normal, healthy person woke up feeling the way I feel on a good day, he or she would decide to spend the day in bed.  There's no way for a normal person to understand our daily struggle.

But life goes on...and so do we, struggling and battling every hour of every day just to do the minimal basic things we need to do to get by.  There is no energy left for cleaning or lawn work or organizing closets or painting a room or any kind of home improvement (or most other activities) whatsoever. 

Most days, I am grateful for the limited energy I have, and I face each day feeling positive and ready to do what I can.  But some days, like today, it all just feels like too much effort, and I wonder how I can possibly go on and face another day of constant battles.  I just want to crawl into bed with a stack of books and take care of myself.

But, as I often repeat to myself (as many times as necessary) at the end of rough days like today: Tomorrow is another day.  And I will start again and somehow find the will to pull myself out of bed and do it all again...somehow.

One of my favorite quotes (no idea what the source is - I saw it on a plaque in a catalog years ago)
Courage doesn't always roar.
Sometimes courage is the quiet voice 
at the end of the day saying,
"I will try again tomorrow."
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