Survey Says! 86% of MSers Deal With Fatigue

Hello Friends,

Recently, over 10,000 MSers completed the MS in Focus online fatigue survey. The combined results are in and it turns out, 86% of us say that fatigue is one of our three main symptoms. That is a lot.

We all know fatigue is a big deal and it seems fairly obvious that a very high number of us claim this is a main symptom. Yet compiling stats like this is important and I, for one, am hopeful that it will fuel the need for more research. More research may lead to better treatment and improved management of this overwhelming symptom. Better treatment and management of MS fatigue will make us feel better. I like the sound of that. 

I encourage you to peruse the full survey by clicking this link: MS in Focus: online fatigue survey.

Be well,

Christie

Tour de Christie

I love to ride my bicycle. This one morning in late October was no exception. And I could not have asked for better weather. The sun was shining, the temperature was warm and there were no head winds. Perfect biking conditions.  I strapped on my helmet, hopped in the saddle, clipped into my pedals and took off, eager to ride as quickly as possible because ultimately that is what I love the most about riding.  

As I rode, I noticed there were more cyclists around than I normally encounter on this quiet path. There seemed to be organized groups with some wearing matching colored jerseys. They appeared to be part of some kind of cycling event and huddled together in groups. I remembered that the MS ride was this weekend yet thought I read that the finishing line was in Encinitas.  I paid little attention and continued my cadence. Tick, tick, tick. I gained speed and rode on, wondering all the while if it was possible that the Bike MS cyclists would end up on this quiet path 30 miles away. Hmpfh I rode on.

I only rode for two more minutes before approaching one of these groups. All members of this club wore orange jerseys, MS orange I might add. The group was resting on the sideline, seemingly finished for the day, so I stopped. I asked if they were riding for the MS ride. Yes, they were. I told them that I live with MS and one rider asked some questions about my diagnosis. We talked about what type of MS I live with, for how I’ve had MS and a little about my cycling. I was touched and I thanked them for riding that day. I clipped back into my pedals and continued riding with a new motivation. Riding for a cure. I am, I can, I will.

I clipped away and I slipped behind the stream of another cyclist. It was just the two of us for a moment or two, yet he, being a more experienced rider, took off, leaving me to ride alone.  The chain, crank, cog and pedals ticked away, kept me company as I cycled along the path. I took on a small incline and as I climbed towards the top, pop! A flash bulb went off.  To my right. Flash! To my left. Another pop! Directly in front of me. Flashes went off as my picture was taken. “Oh dear,” I thought, “I am no longer riding a quiet path.” I felt famous and gave a thumbs up to the camera as the last flash went off. Pop! In the distance, I heard a crowd begin to roar.

Thumbs up to the camera!

It was at this point that I realized this IS the Bike MS event and thought I should get off the path, not wanting to get in trouble. Yet I felt forced to follow the route that was now outlined with orange ribbon. MS orange. There was no escape. The path had narrowed and had no exit point. Besides……my fans showed up so I couldn’t leave.

It was like riding the Tour de France and racing towards a stage finish, or the big finish, in my case, of Le Tour de Christie. The crowd escalated. The cheers roared louder and propelled me to ride faster and faster. Yet I rode with a slight pang of doubt because I wasn’t supposed to be there. I didn’t have an event number on my back. I reasoned with myself, “It’s okay. You can ride, you have MS.” The crowd grew denser and louder as I continued on, motivated by their support. Whistling fans waved flags of orange from behind the route markers and I heard the race announcer’s voice piping through speakers in the background, congratulating the riders. As I approached the finish line banner, I was out of the saddle with a huge smile on my face. “Oh yeah. I am doing this. I am taking the yellow jersey.”

I crossed the finish line, with my hand proudly held high in the air. “I have MS and I just won the Bike MS ride!” Well, not really. But it sure seemed like it. It wasn’t even a race.  But I won my own tour. Tour de Christie. I proved something to myself that day. I am. I can. I will. 

Omhu. This is a totally rad walking stick!

I feel compelled to let you know about this great deal on a really groovy walking stick made by Omhu (Danish for “with great care”).

First, let me describe it a bit. This is not your ordinary cane. When I look at this walking stick, I see bicycles and Scandinavian furniture. And this is intentional. Omhu brings style and a bit of happiness to the walking stick, a nice departure from the usual medicinal looking ones. Rad, right? The wood is all natural and toxic free. The shaft is painted with American bicycle paint and there are six colors available. Mine is turquoise. And, when you lean it against the wall it doesn’t slip because of the grip strips in the handle. The tip has great traction because Omhu uses the same material used in high performance athletic shoes. It is simply really, really cool.

Non slip grip strips!

6 awesome colors available!

Great traction!

I got my Omhu walking stick at fab.com at $50 off! What a smokin’ deal. This is a great purchase for any MSer who wants to walk around with a bit of style. And, they have MS orange!

Now if only I can avoid getting my Omhu walking stick tangled in the legs of my loved ones as they walk beside me!

To buy your Omhu walking stick, go to fab.com. 45 days left for the sale and there are only 9 left!

For more information on Omhu, check out their website.

Be well everyone.

Christie

Hup ECTRIMS!

Hup Holland! I just had to throw that out there as a daughter of Dutch parents. I also threw it out there because in Amsterdam, the ECTRMIS has started! This is the biggest MS research conference ever with 7,000 people in attendance. Our friends Julie Stachowiak and Kate Milliken are there and will be providing updates as the conference happens.  

I love this quote from Timothy Coetzee, PhD when Kate Milliken spoke with him the day before the conference. It sums up perfectly why it is so important that this event is happening:

“We know more now about MS than ever before and we can actually become more precise about how we treat MS so that we can specifically target the immune system, or perhaps think about repairing the nervous system and even take it to the next generation of stopping the disease forever”.  

Be sure to check the National MS Society blog page where the updates will be posted...[read more here].

Live Wednesday Night! "Humor Me" on mslolradio

Friends,

Be sure to check out tomorrow's blogtalkradio program "Humor Me: Finding the funny while living with MS" on mslolradio hosted by our friend Amy Gurowitz. I am not sure about you, but I definitely use humor as a coping mechanism for living with MS. Amy's guests do too so be sure to listen in for a few chuckles. Oh! One more thing. I'll be on the show too!

Please follow this link for more information MSLOLRADIO "Humor Me: Finding the funny while living with MS. You are invited to call into the show to share your funny stories and laughs.

See you there!

Be well,
Christie

When is it Time to Get the Blue Placard?

I knew it was only a matter of time before I made a very important decision. To do the handicap placard or to not do the handicap placard. That is the question. I have been wrangling with this one for some time, always coming up with reasons as to why my perfectly (dis)abled body does not need to be rescued by a privileged parking space. That’s how I see it.  Here’s why.

First, my symptoms are never that bad. At least that’s what I’ve always told myself. I can park in any spot in the parking lot of Bed, Bath and Beyond and capably walk to the front door. This always leads me to my second point, which is that I really do not want to take a handicapped spot away from someone who needs it more than me. How on earth would I be able to live with myself if I drove my car atop the asphalt spot painted with the universal disabled symbol and actually took it from someone else? I am not sure I could live with the guilt of stealing a spot when I feel perfectly fine. This line of thinking always ends with the forever silent, unmentionable realization that I am a disabled person who might need assistance one day too. 

Nope. Not this MSer. My third point I always think is a strong one. I need the exercise. Walking. Walking is good exercise. The farther out I park the car, the more exercise I will get. I often reason with myself. I do not need to shrink my already limited exercise routine by decreasing the steps per minute that would come from parking so close to the entrance of the mall. Ha, ha! Good one.

Lastly, the place where I need assistance the most is at work yet I adamantly tell myself that I am not ready to come out with my diagnosis to my office mates. Parking in the handicapped area will clearly force me out of the MS closet. I know what you’re thinking, ‘o readers of mine. How much of a secret could it really be if I write publicly on this blog? Minor detail. I remain inflexible. I cannot get a handicapped placard. Everyone will notice me stepping out of my car parked in the blue zone right in front of the office building entrance. It will be so immediately obvious. There is no way to avoid it. Everyone knows what kind of car I drive and they do not have a clue that I live with MS. I always ask myself questions. How is this going to work? Am I ready for this or should I dream up a story that I am recovering from a very serious bike accident? People will believe me, right? Yes I realize that keeping up with a story like this will be difficult and has the potential of getting completely out of hand as I will be forced to describe every elaborate detail of my crash. Besides, I can’t wear a fake cast forever. On the other hand, parking is so limited at my office that many of us are forced to park on a dauntingly steep hill that is an exercise routine all in itself. 300+ steps from the office front door to the top. I counted one day. I still conclude and tell myself: more points to add to my third reason above if I don’t get the placard, right?

This all changed with my recent relapse. Just last week my MS took me by surprise and rewarded me with new numbness, from my waist down. Not full numbness but enough to give the impression that I should probably stop drinking at noon. This is when I decided it was time. I wrote it down on my task list: fill out DMV form for disability placard.  I will let you know how my first parking experience goes when my pretty blue placard arrives in the mail. Stay tuned.

In the meanwhile, I am sure many of you have had similar experiences. I would love to hear from you, to hear your story. How was your experience in getting the disability placard?

P.S. If you live in California, you can fill out the “Application for Disabled Person Placard or Plates” through this link:  Application for Placard.

Best always,

Christie

Don’t Miss the Party!

I recently read an article about chronic pain and social isolation and was reminded that living with chronic pain, while it does stink, should not have to interfere with having fun. For me personally, I get my energy from being around my peeps so I don’t like to miss out on the festivities just because I don’t feel good. Sure, I have good days and bad days and I am aware of my limitations but mustering up some energy to spend time with my loved ones always makes me feel a wee bit better.  And, besides, the party is a great distraction from my chronic pain. Jeanne Faulkner of Quality Health put together some good tips on staying socially connected while living with chronic pain [read more here].

Be well and don’t miss the party!

Best always,

Christie