Men weary as much of not doing the things they want to do as of doing the things they do not want to do. ~Eric Hoffer
Is it just me, or do you ever find yourself wondering: “Why am I so tired?”
Sometimes, believe it or not, that is exactly what I find myself asking. “Why am I so tired?” “Why can’t I focus?” “Why am I having so much trouble thinking?” “Why can’t I remember things?”
Then I remember. “Oh, yeah – I have multiple sclerosis…that’s why.”
As many of my friends, family, and followers know – I like being active (mentally and physically). It is hard to hold me still, especially if I am passionate about something. I work full-time (and I am an A-type high achiever); I swim competitively; I do yoga regularly; I volunteer my time in various efforts; I take care of my family; I help out friends wherever I can.
So when I have days that I simply cannot think, or pain flares big-time, or I am so fatigued that I literally sleep for 20 hours in a row or more…it still stupidly surprises me. I actually ask myself “why?” Then remember – “Oh yeah – I have MS.”
My capacity for forgetting seems to be limitless!
Yes, I work full-time – but from home, as a result of an accommodation agreement with my managers. Yes, I volunteer – but in a capacity where I offer my time, and it is not physical and I can do it from home or face-face. Yes I am very physically active – but in a self-regulated and methodical way, and because it is a management tool that helps reduce my pain, which in turns helps reduce the fatigue. In other words – I have MS, and my life and how I cope is directly affected by that fact.
Now I consider myself very lucky because I am abe to be so physically active, and the docs say my MS soes not seem to be taking me down a path where that would change anytime soon. (Cognitively however…that is a different story for another day…) The very fact that I am so physically active, and often more physically active than my “healthier” friends, is the very reason that sometimes I can find myself wondering WHY I am so exhausted or in such pain, or so mentally fogged. I mean, I “look good for being so sick”, as some people would say. (That phrase irritates so many of us…)
And the one thing I do know, and never forget, is that being physically active is good for ALL of us, MS or no MS. The more active I am, the more active I am able to remain. (Though there is a critical tipping point one must be aware of for maximum benefit.)
And yet -The more active, engaged, and passionate I am in my life, the more often I find myself “surprised” by being taken down by my MS at various points. You see, the more I do, the more I feel i can do and am able to do with ease. I will be trucking along at what I think is a fine speed, then WHAM – all of a suden I can barely think, speak, move or keep my eyes open, and my pain is high, and brain fog thickens. And I still ask myself “Why am I feeling like this?”
Oh yeah – I have MS. That’s why.
At those points, I basically have no choice but to let go, and do what I must : sleep and recover. (The latest episode had me sleeping almost 30 of 36 hours. Whoa.) But giving in to the body signals for sleep is a good thing, even though today’s society can often infer a stigma of “laziness” on it. You hear it in comments like “Lucky you – you got to sleep the day away!” It is really not such a lucky thing…it is a matter of sheer necessity. And that is OK.
‘Tis healthy to be sick sometimes. ~ Henry David Thoreau