Tuesday, 29 June 2010

Uphill battles

This one's a little more personal...

I went for a hike last weekend. 8km on a nice, sunny Sunday. It was a day of mixed emotion.

I'm only now, in my thirties, really finding a love for being an active person. At the same time, I'm only now being faced with the realities of having MS.
I love being outdoors. I can't begin to capture the feeling in words, but I'm happiest on trails and beaches. Content. If I have to stop to shake sand out of my shoes or pluck a leaf from my hair, it's a good day.

Sunday was a day of butterflies, dragonflies, and woodpeckers. Dappled sunlight falling between the leaves. I was excited to spend the afternoon outside, challenging myself. Content to be with someone who knows when I want to be left alone with my thoughts and when I need a goofy distraction from my steady stream of internal dialogue.

The first kilometre of the hike was fairly steep. My lungs were burning early on. I don't mind that. Actually, I welcome it. I love being in decent enough shape to know I’ll survive a few hours of burning lungs and challenged quads. After that steep climb, the hike evened out into on a fairly comfortable uphill walk for a while. It was a hot day. Well, hot for me. My internal heating and cooling systems have some wiring issues at times - a problem for many people with MS - so it often feels like a hot day to me if it's over 20 degrees.

After about a kilometre on the easier section of the hike, I started feeling tanked. Out of fuel. Done. My lungs were fine. My legs were fine. But I suddenly felt like I was underwater. Each step took more and more effort. The exhaustion associated with MS is hard to describe. I didn't feel it for my first few years with MS and, to be honest, I wondered if it was real or a pseudo-symptom. I brushed it off as something that other people complained about, but thought surely it couldn't be that bad. Fatigue is difficult to understand if you're not experiencing it. You're not really tired. You're not sleepy. Your legs don't feel weak; they just don't want to work. Nothing does.

There I was, in my perfect scenario - with the birds singing and the sun shining - starting to realize that this damn disease was having an effect on my activity level. It hit me like a ton of bricks. I've walked two half-marathons, but this simple hike felt like I had been walking for days. I'm not exaggerating when I say it felt like I was underwater. My legs felt like they had drag. I stopped often. The trail ahead of me looked like it stretched on forever, especially when it became steep again. I felt defeated.

You have to understand, it's not like I don't have heat-related issues - from the very beginning, I've had Uhthoff's phenomenon - a temporary worsening of vision with exercise (in people with MS who have any level of optic neuritis), linked to increased heat production. I first noticed it when lifting weights four years ago. The carpet appeared to lose its texture in part of my vision. It usually only lasts 8-10 seconds. I also periodically experience Lhermitte's sign, an electrical sensation that runs down the back and legs when bending the neck forwards. These are things that come and go for me. Part of life. Familiar annoyances. If I work out, I know my vision will get screwy if I overheat. Fatigue, however, is a new and difficult beast for me to tackle.

I felt like my mind and my body - my legs, heart, and lungs - were into the hike and enjoying the day. Something else inside of me was not on board though. I tried counting the steps I took to distract me from the rushing worries. I put my head down and only looked at the few feet of ground ahead of me. Nothing helped. I couldn't get my body to cooperate and got lost in a storm of concerns.

I drank some water and that helped a bit. Cleared the fog from my brain temporarily. But as soon as I started going again, it returned. Finally, I stopped trying to fight the emotion and flood of doubts and let myself cry. Not just cry - sob.

Every now and then I need to stop trying to hold onto this strong “MS is just a small facet of my life” persona and feel the bigness of having a body that betrays me sometimes. So, I did. I stopped, faced downhill so I’d stop seeing the vastness of the trail ahead of me, and I let the emotion wash over me. I had my two minute “pity party,” and then turned back to face the trail and started walking again.

I'm determined. For some reason, people think that my quietness means I’m timid, but I have a stubborn streak 3 miles wide. Thanks, mom and dad! So, I kept going. After we stopped for a bit to find a geocache (that we didn't locate, dammit), my fatigue released its grip. I could feel it happening. There was a great cool breeze blowing. The day felt bright again. My body felt like my own and responded as it should have for the rest of the hike. I even ran a little on the way down.

These realities are bitter for me. For everyone learning to live with MS, I imagine. And it’s a constant learning process. New obstacles to work around. New doubts to process. I still feel safe when walking, running, or hiking. I feel like I am 100% responsible for my actions and can do all of these things without fear of hurting myself or putting others at risk, but the fatigue is an uncomfortable reminder that I may not always feel this way.

Happily, life's not one big uphill war. I just encounter little battles now and then.

Friday, 25 June 2010


The video is worth a watch, regardless of whether you believe the CCSVI "Liberation procedure" works or not.

Even if you don't read the text (hard to read white text against the video in the background), just watch these people.
Warning: may cause eye leakage.

Monday, 14 June 2010


There's a "Take Note" debate this evening (8:15 AST) in the House of Commons on CCSVI in MS. It's available on CPAC.

Can't wait to see what comes of it.

Even when I look at the html for this post, I can't figure out the screwy spacing. Oh well.

Thursday, 10 June 2010

Things are looking up Down Under

Again with the CCSVI...

Encouraging news out of Australia

From the New South Wales Department of Health website:

On 20 May, a revised position in relation to CCSVI was advised by Bill Younger, CEO of MS Australia - it includes the observation that MS Australia ACT/NSW/VIC intends to work with leading expert neurologists, vascular surgeons, radiologists, other medical professionals, MS Research Australia and the CCSVI community group to find out more and communicate findings about CCSVI. While it does not recommend that people living with MS seek CCSVI treatment outside controlled tests it acknowledges that this is a matter to be discussed on an individual basis between the pwMS and their specialist healthcare professional - read more. In this regard a growing number of pwMS in Australia are being tested and treated, many with encouraging results.
Nice to see a government body get on board.

Wednesday, 2 June 2010

Take it to the Hill!

Another CCSVI post...

"A group of patients with multiple sclerosis gathered on Parliament Hill Tuesday [June 1st, 2010] to testify how a controversial new treatment has changed their lives, as two Liberal MPs reiterated their call for more research."


In terms of CCSVI, these people are the ones to watch in Canada right now - the two Liberal MPs (Dr. Carolyn Bennett and Dr. Kirsty Duncan) and Dr. Sandy MacDonald (mentioned in an earlier post about CCSVI). Canadians are traveling to Poland, Kuwait, India, and other countries to seek out a treatment that isn't uncommon or any more dangerous than other surgeries. Some of these people are using every cent they have for a procedure they could be having here at home. Dr. MacDonald, a cardiovascular surgeon has been using his own funds to research CCSVI and receive training on Dr. Zamboni's diagnosis protocol. Here's hoping the rest of Canada - a country known for having one of the highest prevalence rates of multiple sclerosis in the world - follows suit.

Following with great interest...