In the category of “always learning the hard way…”

I offer this quick update.

As evidenced by my schlumping, stomping, dragging, bobbing and weaving all over downtown Pittsburgh today, I can confirm that it is not actually a good idea to take one dose of Ampyra on one day, and then no Ampyra at all a second day and still hope that it works. BAD IDEA. Color me informed.

Oh. I also didn’t take my modafinil yesterday in order to give my obsessive broken brain a little break and subsequently slept until 3:30PM. It’s also two days before infusion and I generally feel like shit.

So, experiment over.

I go through phases where I openly resent needing expensive daily meds in order to operate at levels anywhere close to what used to be considered normal for me. I talk myself into the fallacy that if I only tried harder, I too, could be one of those energetic, strong, MS-Cross-fit ladies who looks this disease in the eye and triumphantly yells, “HA!” in it’s face…While lifting heavy weights and running frequent 5Ks. I am all-powerful and will not let my MS get the best of me!

Yeah. So much for that exercise in self-delusion.

I’ve already called my specialty pharmacy today (please call back later, closer to end of day, we should know more then, they tell me). I made it to my office well enough today but my foray into the streets to procure something to eat for lunch was more than a little bit wonky. My muscles are aching like I did a very strenuous workout yesterday (I didn’t). Eyes are blurry as if I’m suffering from lack of sleep (I’m not). I could literally lay down on the floor of my office and go to sleep right this very second.

The see-saw of positive/negative feelings from day-to-day, minute-to-minute, sometimes gets me down. I tell myself I’m doing great. I’m still at the beginning. My life has yet to level out to achieve any kind of new normal. It all just takes time. You can’t rush multiple sclerosis. You can’t ignore multiple sclerosis. You can’t outsmart it either. I’ve personally tried all of those things and failed miserably. Time after time.

I’m going back to focusing on getting my thinking right. It’s a much more productive pursuit where chances of success are much, much higher.

Playing games with drugs is dumb and demoralizing, said the girl with a firm command over the obvious. Bring on infusion day!




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