Genes and MS – 57 Puzzle Pieces!

This is so cool! Scientists with the Human Genome Project have identified 57 genes linked to MS! You can read the full article by clicking the link below:

CLICK HERE TO SEE WHAT CLINICAL IMMUNOLOGIST GRAEME STEWART HAS TO SAY

Yay for Science!

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TMS & Insomnia: The World Just Got Interesting-er

I firmly believe that it’s important to participate in medical trials if you have the option, just remember they exist to find the good AND the bad. And if you can push through the bad, maybe you’ll be stronger at the other end.

MS Adventures – How Do You Pace Yourself If You Don’t Know Your Limits?

Today I’m having one of those days. The ones where you wake up cranky and sore and you don’t want to be nice to anyone. I kinda feel like I’ve been hit all over the head with a frying pan – puffy in some places and flat in others. I just tried to be “normal” yesterday! Why do I feel like this today???

I volunteered to be on a friends’ team for a competition called “Winterfest.” It’s put on by the town, and has different types of competitions that all need to be completed as a team. Friday night was fun, there was a karaoke air-band “Mystery Event,” a “run and grab the paper bag and do what the note on it says” relay, and another I don’t remember. I felt fine when I got home afterwards, so I was hopeful for Saturday.

Saturday was a LOT more physical – we had to build a “Truely Canadian” ice sculpture, (actually, carve it out of a large hill of hard-packed snow,) start a fire from a log we had to cut and split ourselves, (I didn’t do that one – too many pointy objects!) a “do the stuff on the list and take pictures” scavenger hunt, and a crock-pot competition that I helped with by eating the results.

Winterfest 2013 Snow Sculpture - Front

Winterfest 2013 Snow Sculpture – Front. Yes, it’s a beer can with a tab on top. It’s Truely Canadian! You can’t tell, but it’s a 4 foot tall can poking out of a 4 foot tall maple leaf shaped ice bucket. With Moose. Mooses? Meese?

Winterfest 2013 Snow Sculpture - side

Winterfest 2013 Snow Sculpture – side. We wrote our names in yellow snow. Because if you’ve grown up in a small Northern Canadian town, you’ve tried it for real.

Other than the ice sculpture, I really didn’t do much, but with the -20 degree Celsius weather, even the sculpture was too much! I kept thinking “No one who isn’t dealing with this can possibly understand how much effort it takes to pretend to be normal.” I was feeling a bit sorry for myself, when I realized that EVERYONE on the team was dealing with something! Heck, we lost 3 out of 9 people overnight due to illness, and another friend had to leave at lunch on Saturday because his Krohn’s Disease was acting up. I tell you, we’d have WON that competition if we could have added points for every diagnosed condition our various team members were dealing with!

As it was, we didn’t exactly win. We actually got the “If You’re Not First, You’re Last” Booby Prize. I personally considered it a win just for being there, and staying for the entire competition! I think I convinced the rest of the team to look at it that way, and we may even make ourselves a trophy anyway.

But that was then, and this is now, and it’s easy to be all cranky and irritable when everything is sore and you can’t figure out exactly when you should have stopped yesterday. I could get all dejected and say “If this is the price for “acting normal,” I don’t want to do it anymore!”

But then what? I’m not going to hole up in a cave and NOT spend time with my friends. I mean, we’re ALL dealing with repercussions of some sort today. Do I just stop trying? That’s not me. Even a Booby Prize outranks everyone else who didn’t compete! But my limits have changed, my “normal” has changed, and I’m still not sure what it’s changed to. How do I find my new limits if I don’t push at them? Unfortunately, so far every time I’ve pushed, I’ve pushed too far. I’ve never been good at restraint! I’m really struggling with an “all or nothing” mindset. I mean, I feel fine when I do NOTHING, but I get bored and feel guilty for doing nothing, and I have to do SOMETHING. So I do SOMETHING and overextend. I’m just not sure how to find smaller SOMETHINGS to practice on.

So, any thoughts or advice from anyone out there? Have you found your new line, your new boundaries, your new limits? Are you still pushing? What small “somethings” do you strive for? How do you pace yourself in your new world? I’d love to hear some ideas! Just click the “Comment” button below and share some of your hard-earned knowledge!

Hobbies, Compromise, and MS

I LOVE to sing! I’ve always wanted to take voice lessons, but growing up in a small town meant that opportunity didn’t exist. So now that I live in a city, I’m taking advantage of some of the opportunities here!

I’ve been taking private classical voice lessons for almost two years now, which means I started as an adult after I was diagnosed. I’ve seen too many people say they’re too old or they can’t start something new because they’re sick, but if you don’t start now then when will you? All we have is now!

Anyway, my teacher is amazing and she lets me occasionally take a break from classical to get into pop or random karaoke, which is perfect for keeping me interested and engaged. So far I have 3 songs prepared at roughly performance level, and I’m learning another one right now called “Apres Un Reve” by Gabriel Faure, who I think is one of the most brilliant composers of all time. He’s not very well known, apparently because he wrote “art songs’ (single stand-alone compositions) rather than operas. Here’s an instrumental version of Apres Un Reve performed on violin by Joshua Bell:

 

I just want to point out that you don’t need to be exceedingly mobile to sing. MS doesn’t mean you can’t have hobbies, and it certainly doesn’t mean you should give up the things you love! It just means you’ll get really good at compromise. One of my compromises is that a lot of my voice training involves learning to sound like “healthy me” even when I’m fatigued or battling cold and flu-type symptoms, which I am half the time. I don’t need to sound better than anyone else, I just want to do justice to the songs that I’m singing. I want to be able to sing in a way people can hear the beauty of the song itself, the brilliance of the composition. And maybe one of these days I’ll post video of me singing, and you can let me know if I’ve succeeded!

Live Life, Don’t Just Deal With It!

You may have noticed that I haven’t been very active here lately. For a few months, actually. I’ve been doing a lot of thinking and I finally feel like I have an explanation that makes sense.

It’s important to me to be authentic, to allow myself to feel whatever I’m feeling and not to attempt to sugarcoat everything. I believe energy moves in cycles and it’s important to value and respect both the up cycles and the down ones.

I’ve been in a down cycle for a while. I actually had a relapse and I’ve been off work for a month, but I’m getting better and I’ll be back to my normal 13-hours-with-commute job next week.

When I say “down cycle” I don’t mean depression, I literally mean my energy is down. Fatigue and an inability to concentrate have been really debilitating issues for a few months.

I haven’t posted because (1) I didn’t feel like I had anything positive to say and there’s more than enough negative out there already, and (2) posting non-positive stuff about MS depresses me, and I didn’t want to go there.

I’ve been thinking about how to write for this site in a way that’s fun instead of boring or depressing. I’ve come to the conclusion that I should just write about me, about my whole life and the lessons I’ve learned overall, not just about MS. I mean, my life is about living, not just about dealing, right?

So please allow me to introduce myself, I’m a woman of wealth and taste! Well, not so much wealth, but definitely expensive taste lol! I’m a dreamer who loves to sing, draw, rearrange furniture, play in the stock market, and putter around the kitchen. Having MS has taught me a lot about compromise, but it does NOT mean I have to give up doing what I love. That’s what “Be Unhasty” is all about – learning to make time for what’s really important. Maybe I lost sight of that for a while, but now I’m back and I’ll be talking about living a full life, not just dealing day to day with a disease condition!

Thanks for your support! You *are* awesome!

 

Low Sunlight Exposure + Mononucleosis = Greater Risk for MS?

Okay, this is a bit creepy, because not only did I grow up in Northern Alberta (that would perhaps be the low sunlight exposure, although I’m pretty sure it was sunnier there than it is in Vancouver) I also, in grade 10, came down with Mononucleosis. I remember because I got teased a long time for getting “the kissing disease”… why the heck is it called that anyway?

This is a post from a very interesting blog about all kinds of health stuff; please CLICK HERE to go to the original blog! It’s called “A Health Blog” and it’s pretty great.

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Low Sunlight Exposure Plus Common Virus May Raise Multiple Sclerosis Risk

 

Tuesday, April 19, 2011

New research suggests that people who are exposed to low levels of sunlight coupled with a history of having a common virus known as mononucleosis may be at greater odds of developing multiple sclerosis (MS) than those without the virus.

“Multiple sclerosis is more common at higher latitudes, farther away from the equator,” said study author George C. Ebers. “Since the disease has been linked to environmental factors such as low levels of sun exposure and a history of infectious mononucleosis, we wanted to see whether the two together would help explain the variance in the disease across the United Kingdom.”

Infectious mononucleosis is a disease caused by the Epstein-Barr virus, which is a Herpes virus that is extremely common but causes no symptoms in most people. However, when a person contracts the virus as a teenager or adult, it often leads to infectious mononucleosis. The body makes vitamin D when exposed to ultraviolet B (UVB) light.

For the study, researchers looked at all hospital admissions to National Health Service hospitals in England over seven years. Specifically, they identified 56,681 cases of multiple sclerosis and 14,621 cases of infectious mononucleosis. Scientists also looked at NASA data on ultraviolet intensity in England.

The study found that adding the effects of sunlight exposure and mononucleosis together explained 72 percent of the variance in the occurrence of multiple sclerosis across the United Kingdom. Sunlight exposure alone accounted for 61 percent of the variance.

“It’s possible that vitamin D deficiency may lead to an abnormal response to the Epstein-Barr virus,” Ebers said.

He noted that low sunlight exposure in the spring was most strongly associated with multiple sclerosis risk. “Lower levels of UVB in the spring season correspond with peak risk of multiple sclerosis by birth month. More research should be done on whether increasing UVB exposure or using vitamin D supplements and possible treatments or vaccines for the Epstein-Barr virus could lead to fewer cases of multiple sclerosis.”

References:
1. Ramagopalan, et al. Relationship of UV exposure to prevalence of multiple sclerosis in England. Neurology, April 19, 2011; Pages: 1410-1414
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Coping with Multiple Sclerosis

I’ve been looking around for posts or articles or videos that are more positive about MS, and they can be a little tricky to find! There are hundreds of posts out there about how horrible it is, but I want to find different ways of looking at it and dealing or coping with it. Here’s a great article listing five ways to cope with MS. Let me know what you think by commenting below!

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5 Ways to Cope With Multiple Sclerosis

I will never forget June 5, 2008. That is the day I heard the words “You have Multiple Sclerosis” from my doctor. When I got the diagnosis I didn’t cry. I think I didn’t cry because I wasn’t really sure what Multiple Sclerosis was. Unfortunately it didn’t take me long to learn. Shortly after my diagnosis, I had a relapse which prevented me from walking, dressing myself, feeding myself, and from doing a lot of other daily routines. Fortunately, my relapse ended, but unfortunately, I had a few more. The following is 5 ways I found to cope with Multiple Sclerosis

1. Get a copy of the ‘Voices of MS’ Documentary DVD. I had been diagnosed a little over a year before picking up a copy of this DVD. It was recommended to me by an acquaintance who has MS. This documentary features others who have Multiple sclerosis (including David Lander who played “Squiggy” from the television show Laverne and Shirley). The people in the documentary talk about what brought them to their diagnosis and how they live day by day with it. This is not only a great DVD to watch to help you cope, it is also great for your friends and family to watch as well.

2. Understand this diagnosis is also hard for your loved ones. If you have just been diagnosed or have had MS for a while, I am sure you have a lot of unanswered questions. Sometimes, especially when having a relapse, it is easy to feel all alone and feel that no one understands what you are going through. While those close to you may try to understand, they may have a hard time because they do not fully understand what the disease is or are in denial about it. It is very important that you sit down with them and answer any questions they may have and explain how it affects you.

3. Make sure your Medication is right for you. When you are diagnosed, the doctor will usually prescribe medication that he or she feels will help you the best. Unfortunately, the medication initially prescribed may not be the right one for you. Always make sure you are fully aware of any side effects it may have. Always let your Neurologist know if you are experiencing any of these side effects so he or she can put you on something else. The only way to really know what medication is best for your situation is by trial and error.

4.Join an online or offline support group. I feel this is one of the best ways to cope with MS. Why? While friends and family may try to understand the situation and help you, they may not fully understand what you are going through. Do a Google search to see if there are support groups close by. If not (or if you do not wish to go to meetings) do a search for online groups. Not only will it help to connect with people who have MS, you can also get updates on new medications and guidance from others who have gotten disability.

5.Watch for the warning signs of depression. At some point, a large percentage of people with MS get depression. This is either caused by the disease itself, the stress of dealing with the disease, or from the medication. If you have sadness that lasts for a long period of time, it is imperative that you talk to your doctor as they can look into treatments that will help you. If you are suffering even with treatment and feel like you don’t have anyone to talk to, please visit call 1-800-SUICIDE. You can also visit http://suicidehotlines.com for specific state and international suicide hotline numbers.

The above are just 5 of the many ways to cope with MS. In addition to the 5 tips above, the best way to cope with Multiple Sclerosis is to remember that it is not a death sentence and it is possible to live a normal happy life.

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