After the shingles, I was told to delay my Tysabri infusion for 2 weeks due to an increased risk of infection. Because of scheduling difficulty, it will be 47 days between infusions before I get my next infusion. As I sit here at day 43 with heat and humidity rather extreme, I am reminded of the professor making his point about how even little annoyances can become big issues:
As he approaches a kid in the front row he asks, “Please hold this cup for me. I have a hard time walking around with it.”
Of course the student reaches up and takes the cup of water. The professor then asks, “That cup of water isn’t heavy is it? OH WAIT DON”T PUT IT DOWN! The bottom is loose and may come off. The cup means a lot to me, and the juice in it was made by my late grandmother. You don’t mind holding for just a little while longer do you? It’s not heavy or anything is it?”
The professor continues on his lecture and about 5 minutes later he asks how the cup holding is going, and he is told all is well. The professor notes a couple of times when he sees the cup has switched hands, and praises the resourcefulness. After about 45 min he asks,”Since you’ve held this cup so well, would you mind holding it till our next class? It turns out I don’t need a drink as much as I thought. Oops, this is our last class before break so it may be a bit of an imposition, but you’re doing fine. Right? The cup isn’t a big cup is it? I mean it can’t hold my pint of beer…no, I’m not serious, and now I’d really like my drink back. Does everyone understand how a small thing, even a cup too small to hold a pint of beer can be a huge imposition under the right or wrong circumstances?”
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I think about this story as the list of minor symptoms including pains seem to add faster while I am off Tysabri. Seeing how quickly my energy with other people runs low, makes me for the first time question whether I really will make it another 25 years working. Facing that sucks every bit as much as the accumulation of frustrations which come with dealing with more symptoms. I wake just about every day saying “Yup, I’m still tougher than life for one more day.” I never want to say the pain in my arms or head or… is too much. I never want to say something as small and mundane as standing for an hour or worse talking with a rapid speech kid is too much for my brain, but on day 43, I begin to feel like I’m holding that cup without the ability to switch hands or ask somebody else to hold it. The juice seems ever heavier… and heck if it doesn’t feel like it’s getting hotter to boot. If it boils, can I put it down? I try not to let myself think along these lines, but some days are just harder than others. Welcome to my MS.
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