breaking through

I’m tired all the time.

Not occasionally, or if I have less sleep than normal.

Constantly, unrelentingly.  Always.

This is one of the most joyous parts of having M.S. (To be fair,  I felt constantly tired before the diagnosis, I just didn’t have an explanation then).

Fatigue is a funny thing.  I stumbled through yesterday morning, as if in a dream.  I had two chai teas (in an attempt to be more ‘with’ it — and was then sugar-high and jittery all day).  I struggled mightily to remember the end of Sunday night.  Not because I’d had too much wine, but because by the time Sunday began to wind down, I had crossed over from ‘normal’ fatigue to overwhelming, bodily-function-shutting-down fatigue.

Every day is a learning experience.  I think it probably is for everyone, but I’m much more tuned-in to it now.  I have to figure out the pieces of this puzzle in order to live as normal a life as possible.  And the fuzzy vision and tingling legs are significant M.S. factors, but really, the thing that has taken over my life is the fatigue.

In the most basic understanding that I have, multiple sclerosis is my body’s immune system mistakenly attacking my nervous system.  Probably because it’s so tired, it has no idea what is going on.  Being familiar with that feeling, it makes total sense.  But jokes aside, energy is constantly being used to fuel this mistaken battle in my body, leaving much less for other (also important) things.  So when you first get diagnosed, and doctors tell you to just keep living a normal life ~ that’s not the best advice.  Sadly.

What I’ve found is that the healthier I am, the less pressure I put on my body (to digest food, to be hydrated, to have enough rest, etc) the better I feel.  Now, my meds are a huge factor as well.  My meds shut down my crazily active immune system when it seemed to be wrecking my body every four to six weeks.  But keeping that calm consistent is two parts meds, and one part smart living.

Sometimes, I don’t realize that I’m maxing out my body’s capabilities and i have a morning like yesterday.  Sunday didn’t seem bad while I was living it.  But waking up with no memory of my evening and feeling as though I was walking through water the whole day … not the best.  Sometimes I feel tired and I get on my bike anyway, and I actually feel better (weirdly counter-intuitive and I’m still figuring it out).  I know routine is my friend.  I know water is my friend.  I know vegetables are my friends.  Alcohol is not.  Meat is not.  Staying up past 10pm is not.  But I haven’t really hit on a consistently winning formula yet. Sometimes we have a nice steak dinner and a bottle of wine, and I feel exactly the same as I do when I eat zucchini spirals and drink 90 ounces of water.  Other times…. not so much.

And managing the vision and the numbness is much easier than managing the fatigue.  I can’t seem to figure out what works.  Some nights I sleep for eight hours.  Other nights I get up every two hours to use the bathroom.  Some nights I am out like shout.  Other nights I lie awake trying to calm my mind.  Sometimes I am burning up and sweating through my pajamas and sheets.  Other nights I pile on blankets in an attempt to get warm.  Nothing ever feels consistent.

Sometimes I worry about how my work schedule with the pressure and stress affect my body. Whether it’s a major factor when I get cotton brain.  I wonder if that’s why the bike helps even when I feel tired — it alleviates the tension gripping my body.

Mostly I just push through.  Having M.S. means learning to live with the fatigue.  It means participating in events or attending parties even if sleeping seems vastly preferable.  Because the sleep never alleviates the overwhelming tiredness.  The tiredness is a constant companion.  You have to break through to the other side; learn how to live with it.  How to function within it’s limitations.  It’s about both learning how to say no and learning how to say yes.  Learning how to prioritize.  Recognizing the signals your body sends you.  (I am not very good at this yet, but I’m getting better).

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