Back next week. Hopefully. 😦
Back next week. Hopefully. 😦
A few posts ago I mentioned that I had joined Weight Watchers and it, along with the Wahls Protocol, was ensuring I got the nutrition I need in my diet. I’d been experimenting with diets and diet modification for years, talking to doctors and nurses and registered holistic nutritionists… and usually came out with more questions than answers. Questions like:
– If I’m eating right, why do I need all these supplements?
– If YOU AGREE I’m eating right, why are you recommending more supplements?
– What do I ACTUALLY need to take, and in what dosage?
– What do I need to eat, and in what amounts, to get the nutrition I need to cut back or eliminate the supplements?
I discovered that if someone is making a living (or part of their living) selling supplements, they will always have a supplement to recommend, no matter what you’re already taking. I also discovered that medical opinions on supplements for MS vary widely. Everyone agrees that I should be taking Vitamin D, but I’ve been told anywhere from 2000 to 5000 IU’s a day, and somewhere I even read up to 8000 or 10000 IU’s. At one point, I was taking something like 14 pills at once, with all the different supplements.
I hate taking pills. I’ve mentioned that before. That was what inspired me to start looking for food-as-medicine type information. There’s nothing extra for these people to sell, no supplements or whatever, although they may push the occasional book. That’s okay, I’m fine with buying a book or two. It’s certainly cheaper than 14 supplements a month.
I was chatting with a Registered Holistic Nutritionist, who mentioned her Mom had been diagnosed with MS, and she’d found this amazing Ted Talk from a woman who had used diet modification to control her symptoms. This woman was Dr. Terry Wahls, and she went from a tilt-recline wheelchair and secondary-progressive MS to horseback and remission in something like a year, purely through diet.
Here was something I could get behind. I was totally willing to change my diet and my eating habits, because I believed from the beginning that the answer to most of my problems was in what I was eating. I just didn’t know what to change. So I toyed with the Wahls diet. I bought her book, “Minding My Mitochondria,” and read it. Not cover to cover, since some of it was a little too scientific for me, but enough to see what she was talking about. And I slowly started eating less processed foods. And more vegetables. And less grains. Then I took the plunge and went gluten-free, which is one of the most painful things I’ve ever done – my Mom’s Italian, Dad’s Dutch, and we survived on pasta and bread. But suddenly, one day it just stopped being so awful. My biggest discovery is that I can’t use substitutes. Gluten free bread is inedible, so I just don’t eat bread anymore. Cookies and muffins, sure, because they’re supposed to be dense and heavy. I can’t do substitutions because I have a very firm opinion on what food SHOULD taste like, and what the texture should be. So I just cut most grains out altogether, and I don’t even miss them. I’m reintroducing some into my diet, on advice from a Registered Dietitian, but it’s quinoa, rice and oats, mostly, and for now only once a week. I really try to eat more nutrient-dense foods, and starches just don’t have as many nutrients.
HERE IS A LINK TO A REALLY GOOD REVIEW OF DR. WAHLS’ BOOK “MINDING MY MITOCHONDRIA”
I also toyed with Dr. John McDougall’s diet, and I tried a Paleo diet, but if something doesn’t make sense to me, or (more importantly) doesn’t FEEL right to me, I won’t embrace it wholeheartedly. No one source of information, or one type of diet, ever felt completely right to me. Until I joined Weight Watchers.
I know, I know, I sound like a recruitment poster or something. But seriously, the new system doesn’t contradict any of the dietary recommendations that I decided to follow over the last few years, and it actually makes it a lot of things easier for me. I use their system to keep track of all the fruits and veggies and animal proteins and other good things I’m SUPPOSED to be eating, and it’s actually LESS restrictive than what I’ve been doing by myself for the last while. I’m eating a lot more now, and a wider variety of food, than I was allowing myself before I had these guidelines.
This is what I’ve done to combine the Weight Watcher tracking with what I got out of Dr. Wahls’ book, and I ran it by a Registered Dietician to make sure that my new planned diet was healthy and safe – she gave me two thumbs up!
– I aim for 9 cups of water. This may sound like a lot, but I make a lot of smoothies and soups, and I count the water I use in those as well. Plus, since starting Modafinil, the persistent dry-mouth makes me WANT even more water!
– I aim for 5 to 9 servings of fruits and vegetables a day, which is easy if you like making soups and smoothies. I assume 100 grams is a serving, and I label each serving check-box with a colour: red, orange, yellow, 4 greens, blue, and white. White is NOT starch, it’s the sulfurous veggies like cauliflower and mushrooms and onions. According to Dr. Wahls, keeping track of colours helps to ensure you get a good balance of all the different micro-nutrients you need, maybe not every day, but over the course of the week.
– I aim for two servings of healthy oil; one could be a teaspoon of olive oil or 1/8 avocado.
– I aim for 6 ounces of protein in a day, at least half of which will be animal protein. (If it had a face, it’s animal protein.)
– I aim for three servings of dairy – I react funny to cow milk and cream, so I stick to yogurt and cheese, and I use a LOT of almond milk, which also counts as dairy. Not sure why, but I’ll take it!
– I aim for at least one serving of fish a week, and one serving of a non-gluten grain. I’ll increase those as I learn to cook more with them.
– Last but not least, I aim for 2000 IU’s of Vitamin D, a Calcium-Magnesium supplement, and a multivitamin. That’s it.
THIS HAS MADE MY LIFE SO MUCH EASIER! I just have a little list with check boxes, and I try to check my list off every day. No more fretting about what I can and can’t eat. No more going hungry because I can’t figure out what I should eat, or going crazy and eating EVERYTHING IN THE PANTRY. And believe me, with a fruit and veggie heavy diet, I have more problems eating ENOUGH points worth of food than I do going over my daily allowance. Also, Weight Watchers encourages writing down every little bit of food you put in your mouth, and I’ve expanded that to include EVERYTHING, meds and supplements too, and since I’m writing all that down it’s easy to keep track of energy levels and hunger levels as well.
So there’s my take on food, nutrition and diet. Just remember, what works for me may not work for you, and it took a few years of trial and error to come up with a way of eating that’s healthy and comfortable for me. I hope this inspires you to find a healthy and comfortable way for you – it’s completely worth whatever time you spend on it, in the end!
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!
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!
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!
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?
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.
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!
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.
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!
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!!!
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.
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 effects of Multiple Sclerosis touch daily activities, care givers and intimacy with spouse from Brokers Alliance on Vimeo.
The first signs of Multiple Sclerosis: dizziness, blurred or double vision –No family history-MS is not a death sentence.
This is a video of a radio interview with Susan Kelly, an RN who has MS and volunteers with the National MS Society, with some great stuff coming out. They talk about how a diagnosis of MS is definitely preferable to a brain tumor, how to “manage your energy bank,” and how she and her family manages her MS. She keeps a very positive and humorous attitude and it’s really awesome to hear!