The MS Adventures of Ms. Adventure!

I’m so tired of being boring!

Perhaps I’m actually tired of being bored. My last holiday was… 3 or 4 years ago? I’ve certainly had my share of random happenings over the last few years, but I haven’t looked at them as adventures. Being diagnosed with MS really shook up my life, much more so than I could admit at the time, and (despite being a “health advocate” for a few years) I’m only just really coming to terms with it now.

After going on long-term disability (hopefully temporarily!) I moved back to my hometown. Proving my independence has become less important than being in a place of healing, mentally and physically. I feel safe here, in small town Northern Alberta, where I didn’t in Vancouver. Vancouver can be a very exciting, beautiful place to live, but I didn’t ever feel connected to the city. I made some amazing friends there, but I’m much happier living here where it’s five minutes to anywhere in town! Yay no commute! Plus, I know everybody here, my parents are here, and my friends here are really supportive.

Anyway, the reason for this post: I’m taking my blog in a new direction. It’s depressing talking about MS all the time! Thinking about MS all the time! Plus I want to take my LIFE in a new direction, seeing as I have the time now, and I’d rather write about THAT than MS. MS should be incidental, something we deal with on a daily basis, but not the ONLY thing we deal with. So I want to see my life as a series of adventures, and write about that, instead of a series of challenges that all revolve around MS. I’ll obviously still post interesting information about MS. But I’m tired of being the sick girl in the corner who has nothing else to talk about! That is SO not me, even if that’s what I’ve been acting out for the last year or two. I feel much more like myself now, and the side effect of moving back here is that everyone remembers who I USED to be, and not the person I became after my diagnosis. I like the old me better, and they remind me of who I was, and who I can be. Awesome! And they’re not even trying!

So! Guess what I’ve been doing! My Dad and I are renovating a house! It’s old. And it needs a LOT of work. And we work on it an hour or two a day, whatever I feel up to doing. It’s on my own time, and I can nap whenever I want. Most of what my life is now is finding my new limits, learning what I can expect from myself, pushing until I can’t go anymore, and then I need to sleep for a few days. I can’t base my activity on what I used to be able to do, so every day is a learning experience. An Adventure!

So, I have christened myself Ms. Adventure! Or Misadventure. Or MS Adventures? Most days it’s a combination of all three. And THAT is who I want to be, since I’m not the old me anymore, and I’m tired of being bored and boring! I pledge to make an effort every single day to see the adventures around me, to look for beauty and opportunity, and to come up with something interesting to do since I won’t be on disability forever. Heh. The worst has already happened! When I was working I was TERRIFIED that I’d have to go on disability, and now I’m just grateful that I have the time to figure out who I am now, and what I’ll do next.

Next blog I’ll post pictures of the house so far. It’s cool to see things change, especially when you have some CONTROL over that change! Woot!

Migrations!

Hello! I’ve been completely out of the loop for a while, and for that I apologize. I’ve moved (not once but TWICE, 2400 kilometers and into a new province!) I’ve gone on Long Term Disability, and right now I’m in the process of migrating my blog to a new site. Hopefully I won’t lose any information, but since I have to cut-and-paste everything into the new blog I’m just going to apologize now for missing stuff. Eventually I’ll redirect http://www.unhasty.com to point here, but until that time I’m just … well, cutting-and-pasting the old stuff into the new blog. It’s giving me a great opportunity to see the information I posted here ages ago, and haven’t looked at in a while. It’s good stuff! In the meantime, I’ll turn off the “publish to Facebook and Twitter” so you won’t be inundated with new notifications for old information. Sorry about that.

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.

Article Source: http://EzineArticles.com/?expert=Madison_Gregory

MS and Caregivers

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Multiple Sclerosis and Caregivers from Michael Yonchenko on Vimeo.

“Multiple Sclerosis and Caregivers” is a look at the challenges of surviving in a relationship that includes giving care.

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Wow, maybe I’ve been a little selfish and a little ignorant, but because I’m not dealing with a Caregiver myself, I forgot what an important part of the equation they are. Kudos to this amazing video for pointing it out!

Information on the Multiple Sclerosis Association of America – A Vimeo Video Series

Aaah crap and again the video’s not there… the links below should all work though, and all the MS Associations have amazing programs and information.

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I found these amazing videos on Vimeo, which means they’re publicly available and totally legal for me to post here on my blog (for as long as they’re up, anyway lol!)

This seems to be the last video of the series, and it’s got contact info for the Multiple Sclerosis Association of America and some other interesting links. I’ve posted the click-able links as well as info on contacting the MS Society of Canada below the video.

Please watch, enjoy, and comment!

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6. Where To Find More Information About MS from Michael Yonchenko on Vimeo.

This is final part in the series, “An Introduction To Multiple Sclerosis”.

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Here are the links, they’ll open in new windows for you – watch the video for the blurbs on what they all are, or just click and explore!

The Multiple Sclerosis Association of America

The National Multiple Sclerosis Society (United States)

http://www.heuga.org turns into this site (it’s a redirect): Can Do Multiple Sclerosis

MS Friends Peer Telephone Support

The Multiple Sclerosis Foundation

National Family Caregivers Association

The Well Spouse Foundation

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The Multiple Sclerosis Society of Canada

Managing Multiple Sclerosis – A Vimeo Video Series

I found these amazing videos on Vimeo, which means they’re publicly available and totally legal for me to post here on my blog (for as long as they’re up, anyway lol!)

Please watch, enjoy, and comment!

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5. Learning To Manage MS from Michael Yonchenko on Vimeo.

This is part 5 in the series, “Introduction to Multiple Sclerosis”.

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Multiple Sclerosis Treatment – A Vimeo Video Series

I found these amazing videos on Vimeo, which means they’re publicly available and totally legal for me to post here on my blog (for as long as they’re up, anyway lol!)

Please watch, enjoy, and comment!

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4. Treatment of Multiple Sclerosis from Michael Yonchenko on Vimeo.

This is Part 4 in the series, “An Introduction To Multiple Sclerosis”.

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