Saturday, February 9, 2013

Making New Memories

Did you ever just...kinda...miss your spouse?  I mean, sure we live in the same house. We raise the same incredible kids.  We sit next to one another in church. I cut his hair and nag him about trimming his goatee.  He rightly looks away from me when I put color on my hair and walk around the house, looking a complete mess. We know what each other drives.  Hey, that's important.  One should never drive past their spouse and not recognize them.  But something gets lost in the long work weeks.  The events.  The conflicting schedules.

I miss him.

And I just found out tonight, after we resolved to spend a solid hour in the company of one another...that he misses me, too.

We realized that it's been about 13yrs since we had a nice, overnight date with one another.  I specify 'nice', because I had been mistaken in believing that we had other nice, overnight dates in between.  I was reminded (thanks, honey) that they were not. At all:

There was that time we went out to the Cleveland Clinic for my 2nd opinion.  After approximately 2 seconds of neuro exam and MRI review, the verdict was - I seriously did have MS.  What a beautiful setting it was, looking out over Lake Erie, his arms wrapped around me.  And me, inviting him to throw me in the lake and walk away.  If that isn't romance, I don't know what is.

And the time, many years ago, that we went to the mountains.  It was all fun and games 'til I discovered that ms and hot tubs don't mix.  Nothing says 'I love you' like hoisting your wife up and out of a swirling steam bath, because she lost her legs.  I could write a book entitled, "Things My Neurologist Told Me...Later".

Or how about our exotic time spent at a University, where I underwent a study reminiscent of a Bionic Woman tryout.  I was so frustrated with that stupid game where you have to put the pegs into the wooden block as fast as you can that I nearly threw it against the wall.  But I'm a lady and I keep it classy.  Especially when I'm 'on a date' with my husband, who was anxiously watching me from afar. To this day, I will not play the peg game at Cracker Barrel.  Not unless I can throw it in the fireplace when more pegs end up on the table than in their respective holes.  My husband will not allow that.

What. Ever.

That said, we've decided that we need to make some new memories.  Ones that don't include diagnoses, or loss of function, or even a series of neurological exercises...exciting as those may be.  This is a Christ-centered marriage, not ms-centered.  MS is not who we are.

This is who we are:

Parents who embarrass their teenaged children by taking 'self-shots', complete with strange faces and gestures.  Yes.  This is who we are.

(Note to self:  Leave above pictured MS Challenge Walk windbreaker at home while away with husband, or new memories will look a little like old ones.)

Saturday, February 2, 2013

Fatigue...and Coffee.

Oooooh what a week (or 2ish) it's been.

Just as my bologna had a first name back in those fantastic 70s commercials, my 'oooooh' has a first name...and it's spelled F-A-T-I-G-U-E.  Apparently, my 'oooooh' has a last name...and it's spelled L-A-S-S-I-T-U-D-E.

For those who don't know, because lots of us do:

LASSITUDE—unique to people with MS. 

  • Generally occurs on a daily basis  *uh huh...
  • May occur early in the morning, even after a restful night’s sleep *check!
  • Tends to worsen as the day progresses  *UH HUH...
  • Tends to be aggravated by heat and humidity  *or forced hot air heat...
  • Comes on easily and suddenly  *right...right...
  • Is generally more severe than normal fatigue   *you ain't kiddin'!
  • Is more likely to interfere with daily responsibilities  *heck. yes.
MS-related fatigue does not appear to be directly correlated with either depression or the degree of physical impairment.

The cause of MS fatigue is currently unknown. Some people with MS say that family members, friends, co-workers, or employers sometimes misinterpret their fatigue and think the person is depressed or just not trying hard enough. 

Mmm hm.  I can see how they'd think that.

Because let me tell you, I became SO tired.............. 

:::scratch that::: 

...............fuhhhh teeeeged at the end of my work day, that I found myself foggy brained and barely able to keep my eyes open.  Earlier this week, I asked my co-workers if they were suddenly exhausted.  I literally contemplated whether or not there was truck exhaust coming through our heat vents in the office.  But, because I had no headache or other general feelings of ick, it finally sunk in.  Fatigue.  Of the ms-variety.  Most likely the result of fighting an illness a few weeks ago and becoming severely dehydrated.  MS, for me, comes on full force after I've healed from a random sickness.  I'm always left to wonder what it will bring.  This time?  Visual disturbance and a nasty case of the sleepies.

MS fatigue, in my humble opinion, is the suckiest of all invisible symptoms.

I battled it many years ago.  How?  By sleeping.  Much of my day.  I don't have that option now, because I'm working FT.  I need to.  And my workplace is awesome.  But what must they think when I suddenly do my work while standing up in my cube?  Or, if I forget to occasionally stand or walk away from my desk, what must they think when I'm apparently asleep with my eyes open???

Yesterday, I was working on a project that involved reading a report of company listings (small font, lightly colored), punching the company's name into the computer, and seeing if there was activity.  Four hours and approximately 560 companies later, I was asleep.  With my eyes open.  It took every ounce of effort I had to break stride and complete a different task.  Every key stroke was painstakingly carried out.  I found that I missed an entire step in my task.  Well, I didn't find boss did.  I gladly welcomed my new task, which was to be completed out in the chilly warehouse!  I was doing all I could think of to rouse myself from my state of asleep/awake, inclusive of going into the restroom to jump/jog in place.  Got a visual?  I could barely communicate, much less intelligibly.  My poor boss.  That's all I can say to summarize. poor boss.

About an hour later, my shift was over and I was finally 'awake', ready to drive home.  I did what I always my mother.  I told her what happened and how upset it was making me.  Her suggestion?

"You need to start drinking coffee again or something."

This is me - ending the 17 day streak sans coffee - hoping to successfully drag myself through this gorgeous day...

:::c'mon, coffee...we got this!:::