MS Adventures – Modafinil, Day Two – Holy Dry-Mouth, Batman!

Modafinil. Mo. Da. Fi. Nil. My new drug of choice.

Modafinil is a powerful stimulant, and since I’ve had dry-mouth since my first pill yesterday, I’m attempting a caffeine-free day, and just hoping the Modafinil will take it’s place. I’ll let you know how that goes.

I was concerned that the drug may interfere with my sleep patterns, especially since I took it after lunch when I had the prescription filled, but I slept just fine last night. I woke up at a normal time this morning, with no headaches, dizziness or agitation. I’ve been keeping a close eye out for the listed negative side effects, but so far (other than the dry-mouth) there’s been nothing.

One other side effect I’ve noticed is that it’s acting as an appetite suppressant. Unfortunately, I’m hypoglycemic. That means I have low blood sugar naturally, and I really do need to eat every couple of hours. So I need to pay MORE attention to food, since regulating my blood sugar levels will be VERY important if I’m not getting as many hunger signals.

I foresee a possible issue here. Not because the drug doesn’t work, but BECAUSE it works really well so far, with liveable side-effects. I know that doesn’t really make sense. I think maybe it’s my control issues coming up again – I really dislike the thought of HAVING to take something every day.

Actually, I really dislike the thought of WANTING to take something every day.

This is ridiculous. When I get a sinus infection, I take antibiotics, I don’t complain that I have to take pills for that. When I’m really congested, I take a decongestant and an antihistamine, and I’m happy when they work. I don’t complain about taking them. Maybe it’s because I know the antibiotics are short term, and I only take the antihistamines when I feel like need them. So what’s the difference?

I’m willing to bet it’s another control issue. Heh. One of these days, I’ll have to see someone about that!

I’m not sure that anyone who hasn’t experienced a loss of control over their bodies and minds can understand how SEDUCTIVE the thought of “feeling normal” is. I’ve spent the last couple of years redefining my “normal” and so far, it’s not a destination, it’s a process. An alternately lovely-and-fulfilling versus horrible-and-frustrating process.

I guess the trick is to really savor the lovely-and-fulfilling parts, while passing by the frustrating parts, taking in the lessons as you go. I mean, that’s the whole point of the Edison Tally, right? To concentrate on the lessons instead of the outcome.

So. This drug. Maybe it’s a lesson in itself. Certainly, it’ll be a constant reminder that I still have some work to do around control! It’s funny how this one little pill brought up SO MUCH STUFF for me! I actually like it when that happens, because I really believe you have to understand what’s going on in your head, behind the scenes, before you can make changes. And I’m all about making the changes.

Is anyone else out there on Modafinil, or anything else for specific symptom relief? What’s your experience with your medication? Has any of your medication brought up unexpected challenges for you? I’d love to hear from you, just “Comment” below!

MS Adventures – Modafinil, Day One

Today I went to my Doctor and talked to her about going on Modafinil. For those of you who’ve never heard of it, Modafinil is an alertness drug that was originally marketed as a treatment for narcolepsy and other sleep disorders. It’s also marketed as Provigil in the US and Alertec in Canada. Ages ago, my Neurologist suggested I try it, since my major MS complaints are fatigue (Hah! Total exhaustion more like! I wish there were more descriptive words for it!) and cognitive dysfunction, more colloquially known as “brain fog.”

CLICK HERE TO LEARN MORE ABOUT BRAIN FOG

At the time, I said no, because 1. I dislike taking pills and 2. I was in the middle of learning about behavioral- and diet-modification to try to control my symptoms. Now, I feel like I’ve taken those as far as I can, with some success (I’ll write about my diet discoveries soon) and I was ready for the next step. Pharmacology. In other words, pills. I’ve got a few articles below if you’re curious about it, or just do an internet search – there’s quite a bit of information about Modafinil, since it’s been out since 1994 or so, and used to treat several different ailments.

CLICK HERE FOR THE WIKIPEDIA ENTRY

CLICK HERE FOR INFORMATION ON MODAFINIL AND MS

CLICK HERE FOR SOME HISTORY ON MODAFINIL

So! I’ve taken my first pill. Once dose, once a day, in the morning. It’ll be up to me to discover if I need to take it with food or not. I just took it, so I’m not sure exactly how my system is going to react to it, but I’ll let you know tomorrow. I’m both scared that it won’t do anything and excited that it might!

PS I just noticed I used the word “colloquially” in the first paragraph. I feel smarter already!

The Edison Tally – Do Something New Every Day, Even If you Fail

I’ve decided that part of living life as an Adventure is doing something new, or something you don’t want to do, every day. Especially if it’s something that scares you. So, this morning, I finally took the plunge and did something I’ve been putting off for about 3 years, due to fear.

I opened a trading account with an online brokerage. And I funded it. (The fear is still making me a little nauseous right now, and I think I’m still in shock!)

A little history: When I started my blog, I was dabbling at learning about online options trading. I’ve been ghosting the classroom site for YEARS! I’ve been virtual trading (with fake money) on and off, sometimes successfully, sometimes not. Mostly not – I really didn’t take it seriously since it wasn’t real money.

The ironic thing is, I’d started taking classes in the first place because I was afraid of what would happen if I lost my job or became unable to work. I didn’t trust the government to take care of me. But guess what?

IT HAPPENED!

The worst thing I could think of (in my privileged Canadian life) already happened. I could no longer continue working. And I still didn’t open an account. I was too busy. (Yeah, busy feeling sorry for myself!) I didn’t want the responsibility. I didn’t want to take anything else on. And then I moved. And then I moved again. And then I moved again within the town I moved to. But you know what? I got tired of the excuses! I came to realize that the only reason I hadn’t jumped in was FEAR. What if…? What if I haven’t learned enough yet? What if I don’t remember how to apply the principles? What if my brain discombobulates (again) and I can’t focus enough to do it? What if I’m too tired to concentrate? All these reasonable things covering up the real fear: What if I’m no good at it? WHAT IF I FAIL???

Today I found my answer in another question: What if, in a year from now, I look back and STILL haven’t even tried? What would THAT do to my self esteem, to my confidence, to my current idea of self-worth and ability? That’s where most of my fear comes from – not recognizing my current self in the memory of my abilities. I don’t know what I can or can’t do.

So what if I fail? Then I fail – but I don’t think I will. The other day on Twitter somebody posted one of my favorite quotes, by Thomas Edison: “I have not failed. I’ve just found 10,000 ways that won’t work.” So I posted back “Dear Mr. Edison: I haven’t found 10,000 ways that won’t work yet, but I’m working on it!” I thought I was being tongue-in-cheek, but I was actually telling the total truth!

We can only succeed if we give ourselves the chance to fail.

Holy Crap!

That was a real “A-ha!” moment for me. Sounds so simple, right? But it totally shook my world.

Then I decided it would be a fantastic idea to keep track of my “ways that don’t work” as if they were successes, with a list I’m calling The Edison Tally! I mean, in the end, the only real failure is not trying. How can you succeed if you don’t even try?

So I’ve created another page on this blog, called THE EDISON TALLY.

It’s a list of “lessons learned” and I’m hoping to add to it every day, since I’m committed to doing something new every day, and it won’t all work perfectly right away.

I’m hoping you, my lovely friends and readers, will help me add to it too! Just leave a comment at the bottom of this post, or on the Tally page itself, and I’ll copy it in. It’ll take me a long time to get to 10,000 “ways that don’t work” without you!

I’ll Have a Plate of MS With a Side of Crazy, Please!

Have I mentioned I’m a bit of a control freak? Not OCD or anything, but it makes me feel safer to feel like I have control. And we all know that MS is not a condition that is easily predicted, manipulated or controlled!

So I laugh at myself when I notice how strictly I’m attempting to control certain other things in an effort to make up for it. Like the people around me. Or, you know, fundamental rules of physics. Like gravity.

Unsupported Range Hood

Unsupported Range Hood

I partially modelled the reno house using the free version of TRIMBLE SKETCH UP.

I could NOT figure out how to support that range hood. If you look at the picture you’ll notice the only thing holding it up at the front is sheer force of will! Did you know that if you only support an object on one side, the other side simply won’t stay up? Wishing will not make it so. Gravity trumps wishing, at least in this particular case. And it took me an hour, and quite the little temper tantrum, to come to terms with that yesterday.

Sometimes I feel like I’m divided into several people. One of me is my body, my actual physical form. I have a lot of conversations with that one, mostly along the lines of “Thank you, Body, for dealing with everything that’s been thrown at you. I really do appreciate it.”

Another is the five-year-old me, who comes out WAY more than I’d like. She throws temper tantrums when confronted with things like gravity, or the need to explain things when my train of thought is going somewhere I can’t get to. I can only watch myself being that one until she subsides, since everyone knows it’s IMPOSSIBLE to reason with a five-year-old in a temper!

And then there’s me, the one who is always present (at some level) and just kind of observing what’s going on. That one feels like the real me, the reasonable one, but it can be hard to introduce her to someone who has just witnessed the five-year-old. So I just apologize. A lot. Eventually I’ll get tired of apologizing, so I really want to learn to work with that five-year-old! Hahaha now THAT will be quite the adventure!

So! Does anyone else feel like they’re experiencing an MS- (or any other condition-) induced multiple personality? Anyone else having some kind of strange personality crisis, induced by life changes you’re not exactly sure how to deal with? And does anyone have any advice on dealing with the five-year-old inside hahaha?

I’d really love to hear from you! Comment below!

Who Gave My Brain the Laser Pointer?

Do you ever feel like your brain is somehow smarter than you? Like it’s been toying with you, the way you play with a cat using a laser pointer? The cat chases that red dot wherever you point it, but can never chase it down.

Yesterday, that red dot was my train of thought. I could see it, I could tell it was going somewhere… but I couldn’t chase it down. I’d start with a thought, actually talking out loud to my Dad (trying to figure out how to build a wall with a big window through it that can still support a range hood – see the pictures on my Feb 23 blog post.) Then the thought would just… take off on it’s own, and trying to hold onto it long enough to finish a sentence was like trying to catch the wind. And the worst thing was that, on some level, I could see my self being stupid. Unable to communicate.

I used to be such a brainiac! As an architectural drafter, my whole job was about communication. I was the link between the architects (who had all the ideas) and the construction guys who actually put it together. That’s what I DID and I was really good at it. Now it’s easier to pull nails and screw 2x4s together than it is to visualize the result of my efforts. So frustrating, especially since my physical energy doesn’t last all that long either!

So I keep reminding myself “this too shall pass, it’ll get better and/or I’ll learn a cool work-around.” Either way, I’ll learn to deal with it. It’s just one more lesson in a very long list of lessons learned. I heard somewhere that any day you’re not learning you’re dying, so in that case I’m going to live FOREVER!!!

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!

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!

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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