Category Archives: fatigue

Family, family impact of MS or other trauma, family life, family time, fatigue, happy life, raising kids, Uncategorized, worries

The Universally Ordinary Existence

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As my wife and I bought a house, or rather a spot of earth and a promise to build our house, I could not help thinking how ordinary our life is.  We have children who have gone through so much, but still much of their childhood is the same as every other kids.  We may not do everything on the same time line as other families, but I believe we have as much joy and love.  In the end, when I think about what my wife and I do for our children, I think maybe that is what it’s all about, giving them a chance for a life of chances to learn, feel and fail like everyone else.

With all the trials of healthcare our family deals, most of living is still dealing with the mundane.  Taxes are done, the house is chosen, and we can continue the everyday task of learning a little more than we knew yesterday.  The chess peaces are in place, and now we can continue to learn the beautiful game of chess as I try to teach my kids the way my grandpa taught me.  It is just like life.  We start by learning how the little things work, learning the strength of the pawns.  There is plenty of time to learn the importance of moving the less ordinary peaces so they can take advantage of opportunity and protect all the smaller parts of our lives.

Backyard Swings 2014
Backyard Swings 2014

Our kids have the same fears of moving so many other kids have.  It will mean a new school and some new neighbors.  It will mean leaving the backyard they love with a swing set they have played on for hours at a time.  Fears and anxieties of moving abound, and unfortunately they will remain until after our move, hopefully in September.  I hope that they will realize many of their pawns are the same pawns, and the new ones move just like the old.

K seems to have taken the whole moving idea to heart. She is even into rearranging doctor's offices while she waits.
K seems to have taken the whole moving idea to heart. She is even into rearranging doctor’s offices while she waits.

Some days and weeks are just ordinary from the anxiety of doing the taxes to the frustrations of trying to get children to sleep through the night.  I am told there are children who sleep, and it is the midnight wakeful moments that are the exceptions for them.  Still, as we struggle through deprived weeks, I tell myself each bleary-eyed morning, “There are millions of families who wish they got your sleep or could stop their morning for a second coffee to keep them alert.  This tired feeling is normal, even down right ‘ordinary.’“  So what if coffee and soda are more than mere pawns in my defense? 

Some times, I have to remind myself, the strongest part of the family life is not built upon dealing with the extraordinary.  Life is made up of the everyday doings from walking the dogs to reading with our kids.  Every now and then, somebody asks me, “Isn’t it hard to take care of medically fragile children?”  When they do, I tell the truth.  The hardest parts of raising our kids have nothing to do with their medical issues.  The hardest parts are the same for every parent to whom I have talked.   Much like in chess a good defense is made mostly from the pawns, the good family life seems to be made with the every day deeds, overcoming the every day, ordinary challenges…like learning how to change a diaper.

Every kid needs to feel like those whom they are close to go through the same things they do. What is more ordinary than a kid trying to take care of their friends for whom they are responsible?
Every kid needs to feel like those whom they are close to go through the same things they do. What is more ordinary than a kid trying to take care of their friends for whom they are responsible?
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fatigue, MS fatigue, soul tired

Fatigue and Its Relationship With My MS

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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.   
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