Archive for June, 2012

Keep it Cool

Written by on June 28th, 2012 – No Comments

Summer is coming folks! With summer comes beautiful weather, parties with friends, beach time and heat. The four letter word many of us with MS struggle with come summer time. It is definitely this crusaders weakness. I remember being a child and loving the heat and somewhere in my teens I began to fear it. It made my legs feel like leaden blocks. I would always feel like I was over-heating. I didn’t know how to fix it. It would take me being diagnosed with MS and recognizing that I am heat intolerant to start to be able to fix things. I simply cannot regulate my body temperature properly. Now I want to pass on the things that have helped me deal with heat.

Besides hiding inside with a fan on, there are a few things that I have come across over the years that can help keep a person cool. While not everyone can do it, when I bought my most recent vehicle, I had two must haves. 1. It had to be reliable and 2. It absolutely had to have air conditioning. AC becomes my best friend during the summer months. I also have a little portable unit for when I am at home because it’s a hard job keeping the heat out of the home. It was an expense to obtain but it has more than paid for itself with my being able to function during the summer. (more…)

Go with the flow

Written by on June 26th, 2012 – No Comments

2012 has been a bit of a challenge for myself so far. On Feb 2nd I had open heart surgery. In the beginning I felt pretty good.  As the experience dragged on I began to feel some of the same things I did when I was first told I have MS. “Why me?” was the biggest one.  I then went through about a month of feeling really down. I guess I was letting the “what ifs” really get in the way of my healing.  What if I can’t play drums this summer with my band was my biggest fear. I ended up using that fear to get me up and out of bed faster then normal. About 8 weeks after surgery, I was “lightly” playing the drums. About 3 months after surgery, I was killing the drums.

Don’t let fear get in the way of anything.

Is this normal?

Written by on June 19th, 2012 – No Comments

Sometimes I don’t know if something that I’m feeling or is happening to my body is “normal” or is a symptom of MS.  Not the loss of function or outright things my doctor has told me are due to MS, but the little everyday things I might experience that don’t seem worthy of making a doctor’s appointment for. I feel like I’ve developed a tendency to blame things on MS even: I’m tired today– it must be MS. I have a headache– it must be MS, My arm feels weak, my vision is blurry, I feel like crap, it must be my MS acting up. This becomes a problem because sometimes the people who love and care about me will say something like “ oh yeah I’m tired too”, or “ my toes get tingly sometimes for no reason too”, and I reflexively get angry and snap something about how what I’m dealing with is because of MS and is likely 10x worse then what they’re feeling or will ever feel.

One of my goals this New Year is to do a better job of tip-toeing the line between defending my personal experience and accepting the subjectivity of experience. It’s true that my loved ones may never know what I feel but I’ll never know what the experiences on the extreme ends of their spectrum feel like either. (more…)

The Challenge: Get out there and do it!

Written by on June 12th, 2012 – No Comments

One of my proudest moments last year was completeing a 30 day hot yoga challenge. It was hard at first–I’m an ice cream kinda girl living in a coffee shop world but it was something I had wanted to do for myself for the longest time. Finally, I decided that there was no time like the present. Doing the challenge and devoting a part of my day to me really made me see how much of our day we spend doing things for reasons other then our own personal happiness, as well as the things we may do or don’t do based on how MS impacts our lives. Impacts like invasive daily medications, frequent clinic visits, or even the physical and emotional symptoms that we let hold us back in a way from really living and experiencing this life.

For me it was the fatigue. Like many other people with MS, I deal with immense tiredness and weakness. This “invisible” symptom has played a huge part in how much I have partaken in “me” activities since being diagnosed. Activities as routine as going to hang out with my friends, or as spontaneous as just trying something new– fatigue has been my excuse for holding back. Challenging myself really helped me gain a sense of control over how this symptom has held me back in the past. (more…)

The Rick Hansen 25th Anniversary Relay

Written by on June 5th, 2012 – No Comments

RickI’ve been really lucky to have been given some amazing opportunities in my life. On Friday, May 18th, I had the pleasure of being a Difference Maker medal bearer for the Rick Hansen 25th Anniversary Relay, in Coquitlam, BC on day 269 of the relay.

I got up super early to be at the rendezvous point for 7 am, so I could change into my relay uniform, meet the other medal bearers in my group and then board the shuttle to be taken to where my leg of the relay started. Before I knew it, Bob, a middle school teacher had arrived and was passing the medal to me. The official medal was made by the Royal Canadian Mint and was created from almost a pound of silver, so it was heavy, but really, really beautiful. On one side there was the imprint of the glove Rick Hansen wore when wheeling around the world in his original Man In Motion Tour. (more…)