Saturday, July 9, 2016

This Week in My Life: Week 27 of 2016

This week sure went by fast. Recovering from an exhausting week is tough for anyone, but add in MS and the crushing fatigue that goes with it, and it feels like an impossible hill to climb. That said, borrowing some of this week's spoons to supplement last week's supply was absolutely worth it. So I'll keep trudging up the hill.
This week also went by slowly, with the endless nightmare that is the news. My heart/soul/mind is feeling broken and defeated and scared, and I say this knowing full well the place of privilege I speak from, and that there are many for whom the broken hearts and fear and distrust and hopelessness are millions of times worse. How do we cope and move forward with hope and make positive change? It can certainly feel overwhelming and impossible. One thing I've been doing this week (that I know full well isn't the big, magical answer or solution to the huge systemic problems and injustices) is focusing on the little ways I can be the change I want to see. For me, these actions are:

  • being KIND always and to everyone
  • noticing and celebrating beauty in nature and in humanity and creating some myself (I like the origami tradition of folding peace/hope/etc. "into" the cranes and elephants I fold)
  • sharing/liking/signing things in the social media and online spheres that celebrate/promote/maybe-possibly-even-if-in-a-super-tiny-way-help-create-change
  • having conversations with people in my life about these issues (a few race-related topics came up naturally last week with my niece and we had a few good little chats)

Will all of these things, even added together, make any difference at all in the big picture? No. But will they make tiny little differences in a few lives? Maybe. And will they maybe, possibly, when combined with all of the other people taking similar steps make lots of little differences that will add up to make a bigger difference? Yes, I have to believe that they will.

The view from here:

Ducks > Geese. By a lot.

What I read this week:

Everyone Brave is Forgiven by Chris Cleave. Another winner from one of my favorite authors.

Coming up:

Last night in bed, I came up with an idea for a new series on the blog. Leading up to my 10 year MS-versary in a few months, I'm going to do a My MS Symptoms 10 "Greatest" Hits countdown. I've had over 10 symptoms over the years, so I'll either try to limit it to the biggest ones for me or I'll combine a few on the list like numbness+tingling. 

I thought this would be a good idea because it would give a more clear picture to those people in my life who have never seen me with any of the visible symptoms, and who even if they are aware of the invisible ones, might not fully get it. This will educate those who want to better understand what I've gone through and continue to go through. I know many of the people in my life want to know more and want to understand, but some of them might not know how to ask about it, or they've tried and I just haven't really shared much.

But this is also the kind of thing I was looking for in the early days of my diagnosis. I wanted to read stories from a real person about what the experience could really be like, as opposed to a cold and clinical paragraph from a book or WebMD. So this will be me pulling back the curtain in a hopefully somewhat helpful and somewhat educational kind of way. And this is also the kind of thing I "enjoy" reading about from others in the MS blogosphere. It helps to make me feel less alone in this MS mess.

I've put this out there, so now I'm forced to follow through. First installment will be coming at you some time this week. I just have to decide what order to go in - chronologically in the order I experienced them or along a scale of severity/impact or some other way?

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