Some More Narcolepsy Thoughts

Friday's snow was cleared from the roads, but still on the trees- such a pretty on the way to the maple festival

As I said Monday, I've been feeling pretty good the last couple weeks.

I've moved up my bedtime to a more manageable time (though I still want to move it up a bit further) and I'm fairly consistently able to wake up at 6:30. It's been quite a while since I've been able to do that. I credit the frankincense for these improvements. I'm sleeping better and not feeling nearly as exhausted when I get up (though that is all relative...).

I have more energy and less mental fog during the day, which is super nice. This is mainly because of the TRS Advanced, but also the other supplements I take.

I'm exercising more regularly because I'm getting up earlier and because I have more energy.

But for all that, I've realized I'm still not as functional as I need to be.

I'm still having a hard time if I'm sitting still and not doing anything else. There's only two times that this usually happens: church and while driving the car.

Hauling Ocean out of the chapel in the middle of sacrament meeting will keep me awake, but he's getting better at sitting and not being so loud, so I don't have to take him out as often. The last couple weeks have made me realize I need to be that person who knits at church. Ok, crochets, because for the life of me I can't remember how to knit from one day to the next. Crocheting is slightly better. I could do cross-stitch, though that's too fiddly for church I think. It's crocheting or playing solitaire on my phone, and I'd rather not do that during sacrament meeting.

I'm ok driving for half an hour or so, but longer distances are harder. I'd hoped that everything I'm doing would help with this, but our 2.5 hour trip to the maple festival showed me I've still got work to do. I drove because Mr M was up late working (he has the rare opportunity to work over time right now, and we're taking advantage of it while we can). It was the longest I've driven since my diagnosis, and while it wasn't as bad as it has been, I still had to work to stay alert and not close my eyes.

We've been too busy for road trips lately, but as the weather warms, we'll be hitting the road more, and this summer I'll be driving the RV from Idaho to Virginia. Now is the time to figure out what I need to do so we can all stay safe.

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If there's one thing I've learned after nearly 20 years of dealing with autoimmune issues, it's that you never know when things will get better or worse. I spent the last half of 2018 progressively feeling worse, but over the last couple weeks have been feeling significantly better I've been able to get up and exercise first thing in the morning again. I haven't been able to do that since last spring. Summer we were busy with camps and trips, and then in August things got worse and it was downhill from there.

I started the keto diet at the beginning of December, but haven't managed to stay strictly keto. I have a long-standing self-medicating-with-chocolate habit that I've mostly kicked, but every once in a while it still rears its head, especially when I'm really stressed. On the plus side, I've realized that candy, even my previous favorites, just don't taste as good anymore. I've had the occasional bites of potatoes or rice, and they don't sit well and make me feel bloated almost immediately. At this point, candy is easier to stay away from than potatoes- those are my current nemesis, despite them not sitting well (I've dealt with food issues for so long that a mildly upset stomach is not enough by itself to keep me away from it).

Reactions like these do make it easier to stay low carb (and eventually make it back to ketosis), but it's a work in progress. I do have to remind myself "remember those just don't taste that good- the carbs aren't worth it". That said, I did eat maple candy when we went to the maple festival last Saturday. Partly to taste something I hadn't had before, but also partly to help me stay awake as I drove. Eating sugar while driving has long been my preferred method of staying alert while driving. No RedBulls or Monster drinks for me, thankyouverymuch. Give me peanut m&ms, peanut butter m&ms, or Jelly Belly jellybeans instead.

This week I've seen the effects of eating that sugar though. Between that and the time change, I haven't been doing as well this week. The EDS (extreme daytime sleepiness) has been raising its head again, even while working on the computer. This has reinforced just why I have to stay away from sugar.

On the docket now: find sugar free, low carb snacks I can eat while driving. and I think it's time to fill that prescription from my sleep doc and see if it helps.

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So why do I bother messing with food issues and supplements? Because I do feel better. My body has a much easier time digesting low carb/low starch foods, which I've known for years, but not had the willpower to stick to. Low carb is one of the few things you can do to treat PCOS, has been shown to help with narcolepsy, and is helping with my celiac and the fuzzy brain I've had for so long.

But for all that I'm feeling better, I know it's not permanent, as this week has shown. Something could change at any time and I could back slide 3, 4, or 5 steps. It could be something I eat, increased stress levels, or something I'm never able to pin down. When, not if, that happens, I'll pick myself back up, find what works then, and start making progress again.