Monday, June 27, 2011

How do you cope with fatigue?

I am not even sure how I deal with fatigue. At times, I don’t think I deal with it all except to lie down and rest. You know the feeling, right? It can feel as though we got knocked out from having walked into a brick wall. Sans bruises. No amount of caffeine in the world is enough to perk us up although I do try with triple skinny lattes.

I live with the added benefit of stressing that my fatigue is truly a time waster. My mind spins around and around, ultimately helping me reach the decision that fatigue = doing nothing…I feel lazy…I want to get out…do some gardening… I want to ride my bicycle… walk along the ocean…take some pictures…maybe make a painting…fat chance…too fatigued…I feel like an MS blob. Argh.

When I slow down to think about it, I know what is best. “Listen to your body”, my good friend Mel always reminds me. So I try to relax, grab my book and listen to the sound machine soothing me with ocean waves but the squawking seagulls I hear just brings me back to my circling neurosis, reminding me that I would much rather make a walk along the ocean. To hear the waves in person, live from beaches of sunny San Diego. I remind myself to work a little harder, continue reading and before I know it, I fall asleep.

So, my friends. How do you cope with fatigue? I would love to hear about your experiences and tips too!

Sunday, June 12, 2011

Walking the Uneven Streets of Buenos Aires

I recently vacationed in Buenos Aires, my first trip abroad since my MS diagnosis! I had good days and bad days during our two-week stay and sometimes found myself getting stressed and anxious just simply walking down the streets of Buenos Aires since they are uneven with cobblestones and very crowded.  Allow me to share the state of my psyche one morning as we walked from our apartment to the subway station:

The uneven streets of Buenos Aires lurk below

[Christie] Another beautiful and sunny morning in Buenos Aires!  My legs feel wonky this morning, burning and unsteady with every step, so I feel like a drunk and it is not left over from the Malbec we drank last night.  These cobblestones will be tricky.  It’s a good thing I don’t wear high heals because I would fall constantly.  Instead I wear Keens, the most stable and comfortable shoes in the world.  They really handle the cobblestones and make me steady and ready to walk these uneven streets of Buenos Aires.  I like that I have two pairs.  One brown. One black. Squish!  What am I stepping in?  It’s just a little poo, which seems to be everywhere.  There are a lot of dogs in the uneven streets of Buenos Aires usually accompanied by a dog walker and leashed with thirteen other dogs. That’s potentially a lot of poo and this makes me wonder why I haven’t stepped in more. My sweetie tells me, reading from the guidebook, ‘it’s against the law in Buenos Aires if you walk more than sixteen dogs at a time.’ Hearing this makes me ponder how something like this would be regulated.  Maybe Buenos Aires has a special Dog Walkers Unit, DWU, counting the number of dogs per walker.  I imagine the DWU officer asking a dog walker ‘is that little terrier with you, the one peeing on the tree?’  It’s time to cross the street and we wait for the green figure to appear and tell us when it is it safe to go.  In the meanwhile, I notice the enormous piles of trash on the street corner.  And I ask, ‘don’t they have trash collectors in this city?’ I am suddenly reminded that the garbage workers are on strike.  No wonder there is so much trash on every street corner of Buenos Aires. It smells and I stress and I realize that I have more obstacles to maneuver: cobblestones, poo and now piles of garbage and my legs still feel wonky, burning and unsteady with every step. Green light!  We cross.  Oh god.  I freak, ‘why are there so many Argentines coming at me?’  My left eye is whacked, compromised, de-saturated and blurry, and I cannot rely on it to keep me on the straight and narrow. These Argentines are really moving fast! Suddenly, I am forced to use only my left eye since my right eye is now blocked by the figure of an Argentine as we cross the street together. My heart beats harder and my pace quickens. Shadows appear on the cross walk, from the nearby buildings and trees, and the anxiety builds up as I continue walking, in the dark now, refusing to take off my sunglasses because they’re prescription and I am near sighted. As I walk in the dark with these fast moving Argentines I try to figure out, ‘is that one person or three people coming towards me right now?’  Once across the street, I throw out my right hand, drag it along the graffiti stoned walls of Buenos Aires, to keep me steady and ready on these uneven streets. I really don’t want to fall down.  It’ll hurt. I remember what my good friend Mel always says when walking, ‘look ahead. Plan.’ I now look ahead.  Construction coming up! Big Hole! I walk around, quickly and carefully as I try not to fall in.  That would be embarrassing if I actually fell in.  I imagine my loved ones asking me as I recover in the hospital, ‘Christie, how did you manage to fall into the underground of Buenos Aires?’  And I think about how many bruises I’d likely get!  I have enough bruises from all the things I’ve already bumped into:  subway doors and turnstiles, café chairs, and the door handles of the apartment.  I do not need more. It’s not pretty. So in order to avoid more I focus and I plan.  I look ahead for the dangers that lurk on the uneven streets of Buenos Aires.  Cobbestones, poo, garbage and big holes in the streets.  We head to the subway (Subte) and the entrance is wicked intimidating: steep, very steep steps leading into a dark hole. I put my hand out, on the railing and start walking down the stairs. I tell myself, ‘don’t think about the germs and toxins that are caked on the railing.  Just focus and plan on getting down these steps safely’. My hand glides along the railing. Eww!  Germs and toxins.  Good grief.  But, I make it!  We are in the Subte station yet the train we want disappears into the dark tunnels of Buenos Aires. Shit. So we wait on the platform for the next.  I look around and notice that there are a lot of people down and around here.  A lot of Argentines take the Subte.  I begin to niggle.  I hope this crowd doesn’t knock me down.  I am not stable today.  Next train arrives.  Holy Crap!  It’s jammed pack.  How are we going to squeeze on board?  I watch the young man in front of us try first but he gets cut off by three other Argentines the last of whom gets his butt cheeks caught in-between the closing Subte doors as he tries to squeeze onto the already over crowded train.  He gets in, cheeks and all, yet the coat tails of his jacket stick out in-between the Subte doors as the train pulls away into the dark tunnels of Buenos Aires. Decidedly, I’m not squeezing these cheeks on a crowded Subte train.  That’ll feel weird.  Besides, my butt is much larger than his and I’m likely to cause an uproar if the doors try to close which will likely lead to a protest in the streets of Buenos Aires as these Argentines like to protest.  We board the next train which is just as crowded as the other and I smoosh in-between swarms of Argentines who hold me up with their arms, legs, bellies, butts and shoulders and I ask myself, ‘am I even touching the ground?’  All I can do is giggle.  Really giggle. I am the only one giggling on this train, aside from my sweetie, and this makes me giggle more.  The Argentines are not finding this the least bit funny. Suddenly I have to pee.  I hope there is a bathroom at the Evita museum.  Instead.I. Just. Hold. It and silently thank the Argentines who do not laugh for holding up today because I needed some support.  
After walking the uneven streets of Buenos Aries, we squeeze onto the crowded Subte
Despite all this niggling, it has not tainted my wanderlust and I can't wait to see more of this world! How about you? What have your travel experiences been like since your diagnosis (or for your MSer)? I'd love to hear from you!

Best always,

Wednesday, June 1, 2011

The Day I Met Phil of the “Amazing Race”

That's me with Phil of "The Amazing Race"!!!

April 25, 2011.

It was a great day, that 25th day in April, the day I met Phil Keoghan of the “Amazing Race”. He is seriously such a cool guy and a huge MS hero!

I got this chance to meet Phil (yeah, we’re on a first name basis, he’s my new MS BFF) with my good friend Sandy J at the screening of his movie “The Ride”. This movie was incredible. It documented Phil’s journey across the US of A on his bike and he raised over $500,000 for MS!

Me with "The Goths" of the Amazing Race
When we entered the movie theatre lobby, we were greeted by two “Amazing Race” contestants, Vixen and Kent (aka “The Goths”). What a great surprise! They were really nice and even gave me a hug! Phil was in the theatre before the movie started, snapping pictures with VIP audience members. Initially I was bummed because we were not VIP audience members and I wanted nothing more than to meet Phil in person and give him a present. No. One. Else. Was. Allowed. To. Enter. The. VIP. Area. Shit – now what? Sandy J stepped up and led me straight over there. We marched past the moviegoers, ducked the photography light boxes, walked past the photographer and stood in line to meet Phil. No one resisted. MSers are so nice.

Chatting with Phil Keoghan
Within moments I was standing next to Phil. Cool! We chatted about my diagnosis and a bit about the gift I made for him – a T Shirt with a simple message: 2.5 million people in the world live with MS. Phil seemed really bummed. Not about the gift but its message, “I thought it was only 2 million”, he said. Nonetheless, he told me that I had a “great attitude and that you seem to be handling things quite well”. I gave him my card and, upon looking at my profile picture printed on it, the one of me screaming my head off, he said, “that’s a great picture. I love it. It just about says it all, doesn’t it?”

We weren’t allowed to use our own cameras to take photos but someone in charge grabbed mine to snap some anyway. And, I also got a professional shot with Phil. “Make sure you show the T-Shirt”, he said.
Phil checking out my present!

I was thrilled. When he later addressed the audience, moments before the movie started, he gave me a shout out. He told the audience that he didn’t realize 2.5 million people live with MS and that a young woman gave him a T-Shirt with this message. His assistant held it up for all to see. How cool is that? Again, I was thrilled. 

Best always,

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