Saturday, June 29, 2013

MS Lingo: "MS Hug" to "Hallway Pinball"

Remember my telling y'all about the MS lingo decoder over at Healthline? With the help of the MS community, they made this interactive word cloud of common MS terms and symptoms. You can find the word visualization below (click on the image for the interactive part). Enjoy!

MS Hug

Thursday, June 27, 2013

Cotton brain, cog fog or a lesion hangover?

In scanning through the archives of the Lesion Journals, I came across a brief post I wrote over three years ago. It was about my first experience with the symptom I dubbed “a lesion hangover” and I wrote it during the weeks leading into my official MS diagnosis [read more]

Since then I’ve learned that this “lesion hangover” is more commonly referred to as MS brain, cotton brain, cog fog or brain fog. For me, it really does feel like a hangover, less the over abundance of alcohol, and sometimes lasts a couple of days. I have this feeling periodically and it can feel slightly different each time.

Sometimes it feels like a massive number of cotton balls have been jammed into my head and the pressure is intense (hence cotton brain). Sometimes it feels like someone else is at the controls of my brain, slowing things down and making it difficult to process signals, information and/or perform basic calcs (hence cog fog).

Cotton Brain
In their web post, “MS: The Words You Should Know”, our friends over at Healthline describe MS brain as “…when thoughts are cloudy and you can’t think clearly. Everything seems surreal and fuzzy.” Good description.

I find that taking naps helps, a lot. How about you? If you live with MS, is this symptom common for you? And, how do you deal with it? Any tips for the rest of us?

Best always,

P.S. be sure to check out the MS lingo decoder over at Healthline. Great way to learn all about symptoms that MSers live with.

Friday, June 21, 2013

Dealing with my MS, Shame Part 1.

I’ve done a lot of traveling lately and have become UBER aware of what flying and exploring is like with disability. Yet I remain “in the closet” with my MS when faced with options to make travel easier, less stressful, less tolling. I had three opportunities recently to ask for help, to ask for that pre-boarding card before jetting off to Boise, Las Vegas and Phoenix, and I denied myself each time.
Contemplating why
Now that I’m home from these journeys, I’ve begun contemplating the whys. My first instinct is always an attempt to answer the simple question, “have you come to terms with your MS diagnosis, Christie?” I’d like to think the answer is a resounding “YES, of course! All of my friends, family and loved ones know I live with MS, I’ve got nothing to hide. “

So, what’s the problem?

Well, I’m not sure. But, lots of emotions come up when I’m faced with the decision to ask for help or not. As I think about it, the four questions below are typical for me when I sit in the boarding area near the gate. I’ve also made an attempt to identify the emotions that come up for me.

What’s the problem? Why don’t I ask for help?
  1. If I ask for a pre-boarding pass, am I taking away the opportunity from someone else? From someone who needs it more? Emotion = Guilt.
  2. If I join the others with pass in hand, will all the other passengers stare and glare? And, why do I care so much about what complete strangers think?  Emotion = feeling labeled, misunderstood.
  3. Am I really having such a bad day that I need to pre-board? Emotion = Denial.
  4. If I take the pre-boarding card, what if someone who doesn’t know I live with MS sees me? That someone being a work colleague. Emotion = Fear.

Or, gasp! Is this really all about shame?

Shame is a tough one, isn’t it? And, when it applies to having a chronic illness it can be difficult to overcome. I grew up in an environment where being “ill” was a sign of weakness. I saw examples of my loved ones, teachers, and others who, when they were “ill”, toughened it out, never slowing down. Did I grow up in a culture that despised the “ill”? Yeah, I think so. It was how it was growing up in the 70’s and 80’s, at least for me. When someone in our circle became “ill” the message came in a whisper, to hide the reality that someone was just diagnosed with something quite serious.

So now what?

Dealing with shame is a monster for me as it’s not limited to just my MS diagnosis. As a starting point, though, I’ve begun reading I Thought It Was Just Me (But It Isn’t) by Brene Brown. What an incredible book! I’m not even halfway through it and I’ve gotten so much out of it. First, I learned that shame doesn’t go away (UNFAIR!), just like MS, and yet that makes sense to me as I also read that it’s about how we identify and deal with the shame that makes the biggest impact.

Dr. Brown defines shame as “…the intensely painful feeling or experience of believing we are flawed and therefore unworthy of acceptance and belonging.” This certainly gives me something to noodle over, for sure. Hence, once I finish the book, I will post an update dubbed “Dealing with my MS, Shame Part 2.” Until then.

In the meanwhile, I’d love to hear from you. Does shame come up for you, in your life with MS? And, if so, how do you deal with it?

Take care,

P.S. to read more about traveling with MS, check out my contribution on My journey of pre-boarding with MS=, or not

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