Fatigue and Its Relationship With My MS

Fatigue is one of those concepts I find myself constantly breaking up into a few types .
 
1st) This is the one everybody relates to whether they have MS or not.  This is the I just completed a marathon tired.  We can all imagine pushing ourselves further and harder in some physical activity.  For some, climbing a set of stairs would qualify, and for others it might be a triathlon before this fatigue hits.  I think of this as the tired which makes me think, “Crap.  I still need some clothes from the drier and a shower before bed.  The clothes are in the basement, and my shower and bed are upstairs.  Crap.  This is not going to happen tonight.”
 
2nd) This is the intellectually beat down tired.  I know if I was the only one to ever feel this way, the programs on TV at night would be far different.  After a day planning, talking, pretending to be an interesting adult doing adult things like logistics planning for a family or managing a project at work, my mind shuts down.  It starts demanding overtime.  I develop this exhaustion from forcing my mind to be attentive all day.  I start making mistakes, and comprehending new subjects is more difficult.  My memory fades like a chalk drawing in the street during a thunderstorm.
 
3rd) Emotionally drained. I suspect every parent knows this one.  After hours of kids beating on us, whining their milk is the wrong color, asking to play X while simultaneously screaming at their sibling because they don’t want to do the same thing the same way…  Even without kids, just caring about anyone or anything takes an energy which goes beyond the energy needed to placate the physical needs.  Just caring is tiring.  It’s also why the most valuable thing any of us ever give is our love (meant in a more encompassing, classical Greek way). 
 
I think of these three as representing types of fatigue resulting from the draining of three different pools of energy.  For me, I need there to be something left in all three.  If not I start having to dip into my reserves because if any of the pools completely drain I feel damage to the walls of the pools.  If that happens, either it will take me longer to patch and refill the pools or the pools will never again hold as much as they once could.  Of course long before that point, one can see the effects of fatigue.  Whether it’s a slip and a fall or an inability to have a engaging conversation, one can see the impact of fatigue.  I can honestly state MS has limited my ability to take from one pool to fill another.  For an example of what I mean, think of a sports player in the 4th quarter.  Often the yelling increases and frequently we try to use emotion to give us a needed last physical burst.  We all readily drain one pool for another.  Some days I just feel like MS has cracked the pipes between the pools for me.
 
On a related note, I sometimes use the term “soul tired” for those days when I’ve exhausted one or more of the pools, and my reserves have hit critical.  I think of it as soul tired, because I assume there is something inside which allows us to push beyond our comfort, to expand upon that which we can accomplish with ease.  I don’t know of a better way to describe what it is in us which allows us to push harder and further than any thought possible, to keep going long past saving energy for anything, much less a do over…and then start again because the goal is just that important.  Soul tired is when whatever it was, is too tired to be called forth once more.  On those days when I have pushed until at the end there is truly nothing left in any tank to refill a pool, on those days, I know what it means to be soul tired.   
 
Before MS and my kids, I don’t think I ever knew what it was to feel soul tired.  I certainly didn’t know the feeling.  Before anyone feels bad or thinks I feel bad seeing MS and kids sometimes leaving me soul tired, consider what I said above about what allows us to push so hard.  “A goal which is just that important” isn’t something we get to consciously pick, but we’re lucky to have one when we do.   
Share

Stress?

I am having a week which is pushing me to my limits.  I am finding limits like a blind man finding walls without a cane in a building set to be demolished at any moment.  I am running smack into them, shaking off the “ouch” and hurrying onward…but I am tired.  The pain accompanying the stress isn’t helping much either.  I feel like back during my initial flare when I had horrible headaches which woke me up, and the only cure for the headaches was sleep.  I sometimes want to tell my nerves, “You do know you aren’t helping, right?”

With the one kid in the hospital for a 3rd week having set backs, I’ve been forced to provide more for our kids than normal.  They of course feel the pressure of having a little girl in our care in the hospital.  To their credit it means far more than mom is in the hospital with her instead of at home.  They ask every night if she is coming home tomorrow.  They worry for her which shows in more extreme loss of personal controls.  There has a been a teary moment every night for a week, but it’s been needed as the only way to stop the hyper activity.  My voice is very soft by the time the last goes to bed.  I just have nothing left…and then I get up and go to work for the few hours I can.  I am treading water here.

I have let more things slip by me this week than I care to think about.  I sit here writing this stream of consciousness in part to vent because I know I have to let some out and relax before O has surgery next week to remove his tonsils.  I know I have to be stronger because next week will be harder…which means even more pressure to live and do NOW.  Heck, even checking on rates to Disney World at the end of the month for us and the kids is hard (and for this all I am doing is trying to beat an already acceptable deal).   The knowledge most people would kill to have this particular stress doesn’t help one bit. 

There are days I just want the world to shut up  for a minute and let me catch my breath.  Though maybe this is like treading water in the ocean hoping for the waves to stop.  I know the key is to just float and kick…I’m just having trouble finding the relax button on my personal remote to allow me to stop trying so hard to tread water and swim.  Just float…And then

 
 last night happens, a wave to leave this attempted floater sputtering.   After a car ride home from dinner consisting of 2 kids screaming, crying, and hitting all the way home, the kids continue the melt down at home.  As mentioned above, these fits of misguided hyper activity have been happening this week.  Still, as one kid carries soiled clothes to the wash while the other is in time out followed by a switch where the other child scrubs the area with Clorox wipes, I thought I had done well to get kids changed, medicated and in bed on time.  I was completely unprepared to be broadsided by the “if you were calmer and more positive when you felt bad, the kids would behave better for you” assault.  Never mind the same thing happening at the same time when I wasn’t taking care of them.  The follow up was killer, “If taking care of another kid is what is causing this, then we should stop fostering kids.”  Why did I ever bother mentioning I felt bad during the day?
 

Our fight last night was the first time I have ever felt why dogs wander away from their pack to die.  It was the first time I ever considered leaving because of my MS, and I’m still not sure I won’t when it gets to the point where my care prevents other kids from having needed care.  Why should my well being be worth the well being of multiple children?  No, I am not talking suicide, just hermitage.  At least then the world would shut up.

Still, as with most things, time heals.  It’s a new day, and a day without heartburn, so I am left with the attitude of a sport player, “Bring it on.  Let’s go.”  Have I mentioned I don’t float yet?  My legs, long accustomed to running and kicking, sink with inactivity.

Share

Our Family's Stories of Growing Up

%d bloggers like this: