reality… or negativity?

17Sep15

I try not to be negative about my MS, whether here or in real life.

But sometimes, I think it misleads people to believe that everything is all unicorns and rainbows. Which it isn’t, right? I have been tired. I have lost strength, and I’ve had moments of blurred vision–not to mention paranoia about losing my night vision.

A few weeks ago, I taught a spin class at the gym (the only format I feel I can teach with strength… somehow, I have the endurance for it! Other class formats, I can’t demonstrate well enough) and I was chatting afterward with a woman I’ve known for years–told her about my MS, since I’m “coming out” a bit more. I said that I was frustrated with myself, having not done any strength work for the month that I was gone, and that I lose strength so quickly, and physiologically, it’s challenging to recover.

Her response was upbeat: “knowing you, it’ll come back in no time at all!”

But I was a bit… let’s say realistic, here, and told her that with MS, there’s a good chance it probably won’t entirely return, even with my hardest efforts. And then, explained the physiology of it all.

So… was I being too negative about it? Sometimes, we just want people to know the realities of hidden illnesses, right? Even people like me, who aren’t “gloom’n’doom” types. I want people to know that I work my butt off for the pseudo-results that I see. Ha!

(putting in a plug) Which makes it even more important–if you know anyone in the Seattle area, or would just like to contribute, I have my fundraiser coming up in a few weeks… I hope to be able to skim 10% off of ticket sales to donate directly to the Neurology dept at UC San Francisco (where I went to graduate school! not neurology, but pharmaceutical chemistry). This department is doing groundbreaking research on myelin repair, and I really want to support them in any way. Heck, if I could, I’d work my teaching job up here half the week and in their research labs half the week… Whatever it takes! Don’t we all want to see a cure??!?!?

In any case, I’ll post my flyer again–and if you have any questions you’d like to send backchannel: brooke at dancems dot org. Thank you from the bottom of my demyelinated nerves!

Lots of great music! Come join us!

Lots of great music! Come join us!

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2 Responses to “reality… or negativity?”

  1. 1 Johan

    Hey Teach, if I lived in the West the thought of attending would be much greater butt alas, I am in West Michigan,. Dealing with 2ndryMS since 2012. And I don’t think you were too negative. I pick and choose my battles. Most people I give more of a brush off, but, once in a while I let em have it, even people I barely know. Be well and enjoy.

    JE

    • Hey Johan,
      Thanks for the support, and I wish you luck with the spms. I wasn’t “letting her have it” by any means–we weren’t being adversarial–I was still friendly, I just wanted to let her know that my life wasn’t all unicorns and rainbows, despite the fact that she usually sees me on my stronger days. I don’t think a single day goes by when I don’t notice a symptom (a lot of days are minor, but still there) but most people see me as strong and always able to overcome.


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