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Avert Your Eyes. 5/04/13

posted May 4, 2013, 5:17 PM by Kathryn Simpson   [ updated May 4, 2013, 9:45 PM ]
I am one of between 250,000 and 350,000 people in the United States living with Multiple Sclerosis. It's hard to say specifically how many people have MS because it is often misdiagnosed as something else, and many other diseases have similar symptoms that lead to inaccurate diagnosis of MS. I'm not going on today about that part of the disease. I'm just feeling frustrated and discouraged and have decided my best tactic for self-healing this afternoon is to vent. 

Here's the deal as I see it: Multiple Sclerosis is a soul-sucking succubus that drains my energy, my vitality, my sex drive, my coordination, my self-esteem and my wallet. All in no particular order. 

Now, MS presents in many different ways and follows many different paths for those of us afflicted. I have been fortunate to maintain a good amount of my mobility and independence since it urped its way into my life. I personally know many others who would love to walk freely, as I currently do, without assistance from a cane, a chair or walker. I know how lucky I am in that respect. But regardless how ambulatory we are, we all have to face a major adjustment in the form of MS Fatigue. This is the thing that has me so pissed and bitter today.

First of all, please understand that fatigue is not the same as being tired. It's not the same as being out of shape or lazy. It is something totally different. I didn't understand that before all this happened to me, but let me tell you.... Fatigue sucks. I liken it to Scarlett O'Hara pulling that horse and wagon through the mud while it carried Miss Melly and Prissy and Pork and whoever else. Only pulling it up hill. On a road made of fresh salt water taffy. Towing a disgruntled rhinoceros. This is hyperbole only in the most tame of definitions.

When fatigued, the littlest most innocuous tasks become exhausting. A "good night's sleep" does not preclude me from needing a solid two hour nap about an hour after I arrive at work. Or, while I'm on the train heading in to work. Or while I'm at work doing a task of great importance. Or, you know, talking to a colleague. Or my husband. Or while, in last night's exciting example, seated in front of a live band playing REALLY LOUD AWESOME MUSIC. They were truly great, and I hope they didn't notice my cartoonishly repressed yawns. I just couldn't stop trying to figure a nonchalant way to slide under the table and stretch out between the feet of the others in the live audience. This is how I felt:




I did get home without humiliating myself. This timeBut next time you see me, if you catch me in the world's biggest yawn like this guy at at :47just avert your eyes. It's only my MS. 

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