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!

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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!

Happiness is Tut’s Notes From the Universe!

I can’t believe I forgot about these!

I know I said I’d post pictures about the house reno, and I will this weekend, but I just had to drop a note about this crazy amazing service. Mike Dooley, in his “Notes From the Universe” emails (which are very short, very inspirational, and you can pick how many you want to receive in your inbox) are personalized messages that The Universe sends to you whenever you want them. They’re all about loving where you are right now, and having hope for your goals and dreams and future.

So many of us with a medical condition we get to confront daily FORGET that the most important thing is to feel good about ourselves, no matter what our struggles are. We can’t heal if we spend every moment feeling horrible.

So here’s The Universe with a “pick-me-up” for you all!

CLICK HERE TO CHAT WITH THE UNIVERSE

Check out the site, subscribe to the Notes, and have a fabulous day!

PS Last blog I christened myself “Ms. Adventure” and today I noticed my first email was from “Tut’s Adventurers Club.” Coincidence? I think not!

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!

MS and Quality of Life

MS and Quality of Life from Tanya Asbreuk on Vimeo.

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I suppose there’s always a compromise between cost and quality of life if you have to pay for treatment. But what’s the cost for your quality of life?

In this video I continue the conversation I was having with Lisa who runs Brass and Ivory, a site chronicling her MS journey with links to a lot of other MS blogs, and Amy who runs MS Softserve, a soon-to-be-available NPO site offering customized learning about MS.

My MS Treatment

My MS Treatment from Tanya Asbreuk on Vimeo.
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It’s important to be able to make informed decisions on the treatments you going to undergo, especially if they’re drugs that you’re going to be on for a long time. Here I discuss the options that worked for me.

The two ladies I’m talking about or to are Lisa who runs Brass and Ivory, a site chronicling her MS journey with links to a lot of other MS blogs, and Amy who runs MS Softserve, a soon-to-be-available NPO site offering customized learning about MS. Both are amazing resources, so I encourage you to check them out!