Let’s talk sleep. Actually, more concisely, let’s talk about lack of sleep. I have a rare neurological sleep disorder called Idiopathic Hypersomnia. It is akin to narcolepsy in presentation but has different mechanics behind it. Whereas narcolepsy symptoms are from the brain going into REM out of order thus never really reaching deep sleep, IH is currently undefined, as the name implies, since idiopathic literally means “cause unknown”. Mechanics aside, symptoms of these two rare sleep disorders are almost identical. This is because both stem from a lack of restorative sleep.

So what does this mean? Well for me personally, it means struggles in working memory, adaptive functioning, microsleeps, sleep attacks, and even hallucinations. Sounds like a lot, doesn’t it? Truthfully though, it isn’t quite as daunting as it sounds. I have been dealing with these symptoms since I was about 9, albeit undiagnosed until 2019, and as such I’ve developed pretty good coping skills and self adaptations to combat my lack of sleep and make my daily life easier. The purpose of this particular post is to focus on those adaptations.

Lists

I use lists for everything, I even have lists for my lists. I have lists for groceries, budgeting, scheduling, cleaning, even just putting my thoughts in order. It is also helpful for me to write my lists down on paper. It would seem in today’s digital age it would seem more convenient to put them in my phone, but there’s a couple reasons I don’t do this. The primary is because my working memory and object permanence have become so bad that if I don’t see it regularly, I’ll forget it exists (this is a big reason I have a master list keeping track of all my active lists). I also find that I can remember things better when I sit down and put pen to paper. I was a big note taker in school, so this makes a lot of sense to me.

Planning

Specifically regarding meals. Let’s be real, when you’re chronically exhausted, trying to figure out what to make every single day is tough. And once you’ve decided, you must work up the energy to actually cook it. This is, of course, made more difficult by other constraints you may have (finances, time, etc). And sometimes, when all’s said and done, it’s 8pm and you still haven’t started. At least that’s the case for me. So I plan my meals a week ahead. This takes care of some of my in the moment mental load, as well as helps make things like grocery shopping easier. Not only do I plan dinners as many other folks do, but I also plan breakfasts, come up with snack options, and plan school lunches for the kids, all in fairly significant detail.

Alarms

I have alarms for everything. No really, everything. I have 12 outstanding alarms in my phone to remind myself of everything from getting up to taking my medication to eating lunch. I also set “in the moment” alarms for things as they come up. Have an appointment in an hour? I have an alarm for that. Phone meeting this afternoon? I have an alarm for that. Dinner date with the hubs?…… Well this one doesn’t happen often because we have three high needs children, but if it did you can bet I’d have an alarm for that too!

Honesty

I make a point of vocalizing how I’m feeling, if I’m struggling with micro sleeps or hallucinations, what my moment to moment limitations are. Not only have I been working on being honest with my community, but also myself. This is absolutely the hardest thing I’ve had to learn in dealing with my disabilities but is absolutely the most important in my opinion.

Whether you experience chronic exhaustion, have kids who are keeping you up at night, or just are not getting enough sleep I hope these tips can help you cope a bit better. In a future post, I will outline some things I have found helpful in maximizing the amount of restorative sleep I can squeak out, which includes the use of weighted blankets and practicing good sleep hygiene.

Have a wonderful day and may you get a good night’s sleep

Janine