Attitude Adjustment

Source: via Pamela on Pinterest



In my last post, I mentioned that I’ve been having a bit of a regression of sorts. The term I used was a “sickly, sleepy, slob” to be exact. I’ve been in a better place compared to where I’m at now. I’ve felt better. As frustrating as it is, I know I’ve been at fault for this change. As such, I’ve been doing some introspection. What have I changed that could possibly cause my symptoms to come back in almost full force as if I’m not taking any medications? What can I do differently to get back on the right track? And then it occurred to me that there are a lot of people with narcolepsy that don’t follow this same approach. They pick up the phone and call their doctors. I’m not saying that is right or wrong; it depends largely on how severe your symptoms are at any given time and what other options you feel your doctor may have for you. Since I’m already on Xyrem and Ritalin and he has told me there aren’t a lot of other options, it would be a waste of my time. Besides, I’m getting tired of relying on pills when I’ve seen others benefit greatly from changing the way they eat. Now, with the Narcolepsy Network Conference having sessions regarding food sensitivities and how they affect people with narcolepsy, it seems like there is positive movement towards acceptance in the larger community that maybe, just maybe, people really CAN get relief with diet changes. Sadly, I didn’t see these sessions in person since I couldn’t make it this year, but the reactions I’ve seen in the blogosphere thus far have been positive. Fist pump! But I digress…

So yes, I started a quest of introspection. First, I started to think about my state of mind over the last month or two. I have been in a bit of a funk, people. Honestly and truly, I have not been pleased with the world. I hit a snag in my plans and darn near lost all motivation to achieve goals I’d set. Dare I say I was close to depression? Instead of my usual “I can still do anything I put my mind to” approach, I started letting narcolepsy be my excuse to stop doing things. I took a break from school. This was actually a good decision because I was nearing burn-out, but I’ve extended it beyond the timeframe I needed. Realizing it will be another three to four years at the pace I can manage without crashing has taken an emotional toll and has thrashed my motivation.

I stopped running because I just kept feeling “too tired”. Occasionally, I’ll get a wild hair and go for a quick run, but I have not run consistently since January/February. I’ve also been slowly wrecking good eating habits I worked really hard on establishing. I’ve been reaching for those convenient gluten free substitutes and eating sandwiches, pastas, and rice because I’m just too tired to plan and to cook meals that I spent all that time planning. That’s a lot of sleepy carbs weighing me down. Not to mention I most likely consumed gluten while eating out during vacation.

I stopped writing. WHAT?! I cannot believe I just admitted that. But I have. I have been denying myself of my creative outlet and my outlet for expressing myself. My private journal has suffered, but my blog has suffered the most. Part of the reason is that I enjoy being positive and motivating. I didn’t want to start gunking up my blog with “woe is me” posts. I realize now that I wasn’t doing myself or my readers any favors because it would have illustrated natural fluctuations that can occur (less daylight seems to have an effect on lots of PWN) along with the fact that without diligence, the symptoms creep back in until you’re back to finding yourself waking up with drool running down your chin while sitting on the toilet in the middle of the night (true story).

Once I finished with all that introspection, I felt even sleepier. After all, stress and feeling down on oneself exacerbates symptoms, especially cataplexy. I’ve had three knee-buckling-falling-down attacks in the last week alone – more than ever before. Luckily, now that I’ve had the strength to admit to myself that I’ve been sabotaging my efforts to be in control as much as I can when it comes to managing this silly disorder, I’m ready to take care of business. I’m ready to recommit to myself – make myself a priority again. It was time for a little attitude adjustment.

It occurred to me that some of you out there may be sitting in the same spot. Suddenly, you’re asking yourself, “What the heck, Self? We were doing GOOD there for a bit.” Or maybe you’ve not felt what it’s like to be somewhat in control and are wondering how it’s done. It’s at this place that you’ve got two options: stick with the status quo or don’t. Recommit to making yourself the best YOU that you can be or don’t. What’s it gonna be?

There are some of you who will say, “But Heather I want to feel better, but I just don’t know if that’s possible. I mean, my symptoms are so severe. I’ve tried everything.” To you, I give Henry Ford’s most famous quote. “Whether you think you can or think you can’t, you are right.” Have you really tried everything? Of the things you tried, especially natural things like diet change, did you painstakingly make sure you were consistent in your efforts and didn’t “fudge” one bit? Did you give it enough time? I made the mistake in the beginning of my gluten free journey to say I would try it for a month and see how it went. It takes almost that long to even get the gluten out of your system, let alone have enough time to really gauge the impact the diet change has if you don’t inadvertently eat gluten. (Soy sauce, anyone?) When you start a new medication, you can’t take it for a few days and say, “Gosh, this doesn’t work at all.” Of course it isn’t working yet; it’s only been a few days! Also, what was your attitude about the change in the first place? Were you convinced it would work, or were you thinking that it would be a lucky break if it did? The same questions apply to any method of symptom management whether it is a new medication, vitamin/supplement regimen, adapting your sleep schedule, or any number of therapies. Why is attitude so important? Chances are your attitude will match your level of effort. If you believe it will work, you will muster every ounce of effort you have from the deep recesses of your soul. If you do not or aren’t sure, you’re not as likely to try so hard. I’ll quote it again. “Whether you think you can or think you can’t, you are right.”

Well, darn it, I can! I can work harder than ever before to get control over my own life. I WILL work harder than ever before to get control over my own life. You’re going to start seeing a lot more of me around here again. I’ve signed up for a 5K race in January that I’m going to start training for next week. I’ve planned out next week’s meals of clean, low carb, gluten free food to fuel myself properly. I’ve been going to bed on time, but I need to get back to waking up on time and taking my nap on time. And because I’m going to share my successes and my opportunities for further improvement, you know I’ll be writing again. Yeehaw! It feels great to have a plan and to know that it’s going to work!

What I realized through my exercise in self-reflection was that I am ultimately responsible for my own care and my own manageability of this stinking disorder. Not my doctor. Not my family. Me. I’m committed to me. Are you committed to you?


  1. Gina says:

    Oh Heather! You just hit the nail on the head with such power and force of conviction that I’m sitting here stunned and awed at your eloquence. Your blog just pointed out the fact that no matter what, we choose our destiny. We. CHOOSE. That’s right all you narcoleptics out there that say “I didn’t choose to have this disease.” or “I don’t choose to sleep all the time.” You’re right. But DAILY you choose how you deal with this disease. I’m proud to know you Heather. Proud to have connected with someone that CHOOSES to come at this disease with an attitude, daring Narcolepsy to “bring it” because you are ready to fight and fight dirty. I tell you this much, when you blog about this journey, this fight, I’m gonna be right on the front row to watch. Yelling slurs at the narco-beast and holding up a big ole foam finger with your name on it!

    • Heather says:

      Thank you, Gina! I love my family and myself too much to spend my days sleeping and being a complete grump. An occasional slip-up is bound to happen, but when you don’t get yourself right back on track as has been the case with me this round, it’s time for a kick in the pants to get moving again!

      • Wilbert says:

        I started a low-gluten/gluten free diet when I got sioures about my fitness.I feel lighter after meals and more able to exercise. Plus my muscle/fat ratio is continually improving. Many people are intolerant to some extent without realising it and many digestive issues can be solved by butting gluten out of the diet.Plus, while a gluten-restrictive diet is not necessarily calorie restricted, the fact that more of your calories come from protein and the fact many snacks are off-limits often translates to a lower-calorie diet, which has obvious benefits for weight loss.I wouldn’t personally recommend Atkins as a diet plan. I understand using it to lose weight in the short term but I think the macro-nutrient profile of the diet is less than beneficial in the long term. As an alternative I would recommend looking at the Paleo or Primal diet. It’s based around fruits, lean meats, root vegetables and so forth. I’ve been doing that but including dairy products and have seen great results.Stuff that contains gluten includes bread, pasta, rice and most empty/bulk carbs. After a while, you’ll get used to checking food labels to see if stuff is gluten free.Good luck!

        • admin says:

          Thank you for your comment! I’ve been gluten free since April of 2012, so I’m coming up on a year. It does help, but I feel I can improve my diet even more. I’m actually looking into Paleo/Primal. I was diangosed with mild gastroparesis last month, though, and I hear that eating fat is not good for that condition. However, I feel that my gastroparesis may be caused by one of my medications, so I’m starting to come down on the dose to see if things improve. I am definitely interested in trying the Paleo/Primal lifestyle once I get my appetite back.

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