Tag Archives: positive attitude

MS Adventures – Modafinil, Day Three – Coming to Terms With It

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Three little pills, spaced over three days. I’m super jittery but I feel AWAKE! Alive for the first time in forever. Looking forward to testing my limits all over again!

And a little afraid of the crash. But only a little.

Yesterday I didn’t have my normal morning coffee, because I hoped Modafinil would do enough to keep me awake. What I FORGOT was that there’s no actual caffeine in Modafinil – it works on a totally different part of the brain. So by about 2pm I had the (by-now-familiar) withdrawal headache. I have a love-hate relationship with caffeine – we break up occasionally, but I always go back. Anyway, I don’t like drinking coffee after noon or so, because it can interfere with my sleep, so I just waited it out. I kept telling myself “You’ll go to sleep tonight, and in the morning you’ll get up and have your coffee, and it’ll be AMAZING.”

So I just went about my day, doing housework and stuff (MUCH more housework, and more quickly than usual, by the way!) and it was fine, my energy levels were still pretty good, even with the low-grade headache. Right up until about 7pm when the Modafinil, rather abruptly, stopped working. Left my system. Done.

I was at a Weight Watchers meeting. (I’ve discovered that the new system is PERFECT for me, in combination with the Wahls Protocol, to help me make sure I’m getting the nutrients I need.) Anyway, I got hit suddenly with a dizzy spell hard enough to stagger me. I was standing in front of a table, and I’m really glad the table was there, because I’m pretty sure I would have hit the floor otherwise. One of the ladies asked if I was alright, and I said “It’s fine, my new alertness drug just wore off.” But inside my head I was frantic: “How the hell am I gonna get home? I can’t drive like this!” Thankfully, I quickly realized two things: 1. I moved back home so I had LOTS of people I could call if I really needed help, and 2. the dizziness was already wearing off, even if the brain fog wasn’t.

And I honestly think the brain fog wasn’t that bad, it was just that the CONTRAST between the alertness I had felt and then the exhaustion when it wore off was so sudden and pronounced. I had just moved from what felt like my “old, pre-MS normal” to my “MS normal.”

And it scared me. And then I started to over-think the situation (as usual) and freaked myself out even more.

Modafinil isn’t a physically addictive drug. That means my body apparently won’t develop a tolerance, so once my Doctor and I find a working dosage, I won’t have to increase it over time to keep the same effect.

But psychologically? Whoa Momma! I’m incredibly grateful right now that I don’t have an addictive personality. The only addiction I’ve ever dealt with is caffeine, and I’ve weaned myself off it several times, just to make sure I still could. Heh. Another control issue?

But Modafinil? The thought of feeling normal, and all I have to do is take this little pill? One teeny tiny pill, to make such a difference…

That terrifies me. Because I want it so very, very badly.

But that means giving control to this little white pill, doesn’t it? And I know I’m going to do it anyway. The thought is accompanied by both exhilaration and fear.

So yesterday, as I said, I told myself “You’ll go to sleep tonight, and in the morning you’ll get up and have your coffee, and it’ll be AMAZING.” And it was! I actually sat and REVELLED in the coffee, quietly of course. Too early for loud revelling, and besides I hadn’t had my Modafinil yet, so I wasn’t feeling particularly bouncy.

But I was waiting for it, looking forward to it. Craving the thought of feeling normal, if only for half a day. And I understand now, in a way I never have before, how insidious addiction could be. How somebody (with fewer control issues maybe?) could be completely overtaken, suffocated by it. But welcome it anyway.

Holy crap that scared me.

And then I realized that, once again, I was over-thinking. Maybe, just maybe, I should look at Modafinil differently. I mean, if I learned that a friend was on antidepressants, I’d applaud them for reaching out and talking to someone, and taking control of their situation. Too many people, I think, still assume that therapy exists for the weak. I think it exists for those strong enough to talk to someone about their lives, people who are proactive and want to change things about their thoughts and situations. (Ahem. I finally made contact with a therapist, to discuss my control issues and learn to deal with “my new normal.” I’m now on a waiting list. But I’m still happy I finally reached out to someone about it!)

Anyway, maybe I should think about Modafinil the way I think about antidepressants: it’s a way to help regain control, not a way to give control away to a drug. So I asked myself a few questions:

Q: Is it a necessary drug for me to take? Will my condition get worse without it?

A: Well, no. Most likely not. There have been some studies indicating that Modafinil may slow MS progression, but not enough to make it “a necessary drug.”

Q: Will my experience of life be enhanced by this drug? Will it help me participate more fully in my own life?

A: Yes, I believe it will.

Those simple questions, that stated belief, has leached away most of my fear regarding any loss of control. In any case, it’s only day three, and I may have a lot more to learn about this lol!

So my lesson for today is this:

BE AWARE OF THE CHOICES YOU MAKE, AND WHY YOU MAKE THEM.

That’s it, that’s all. There are always consequences, so when you’re making what you feel is a major decision, think about it. Be aware enough that you can feel good about what you decide. Write down your reasons, because it’ll help to remind you later WHY it was a good decision for you at the time. Is the end result worth what you feel you’ll have to give up? If your answer is yes, then just do it!

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

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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!

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

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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?

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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?

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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!

Happiness is Tut’s Notes From the Universe!

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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!

The MS Adventures of Ms. Adventure!

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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!