More-than-tired mama

I don’t typically discuss this via our blog, but I have a sleeping disorder. While sleeping, my brain looks and acts like that of a person with narcolepsy. Essentially, my body doesn’t naturally allow me to stay in deep, restorative sleep, which causes excessive daytime sleepiness as well as body pain. For years, my main method of treatment has been to take twice nightly doses of a highly regulated medication that, if sold on the black market, is used by reprehensible individuals as the date rape drug. This medication basically knocks my body immediately into that deep level of sleep that I need in order to function well during the day.

When baby E was really little and still feeding at night, K and I took shifts that would allow me to continue taking my medicine: K would get up with E in the middle of the night and I would take the very early morning feedings to allow K to sleep in. Now that E more or less sleeps through the night, I go to bed early, take my meds, rise early and take care of E in the morning while K stays in bed a little bit longer.

These strategies seemed to work pretty decently for a while, but I’ve noticed that my consumption of caffeine has dramatically increased over the course of these past few months. By 1 or 2 pm, I feel practically comatose and in desperate need of a nap. I have, at times, inadvertently fallen asleep at my desk while in the middle of a project, and have also felt simultaneous exhaustion while feeling jittery and wired from caffeine. This experience needs to be contrasted a bit with the typical level of mama exhaustion, and there’s an element of that at play here, too. What I mean is that my narcoleptic symptoms are more active than they have been in the past several years.

I was pretty fearful of how the addition of a child would impact my already disordered sleep and knew that I’d likely need to consider adjustments to the management of it. I had a regularly scheduled neurologist appointment yesterday and took the opportunity to address some of these recent developments with my excessive daytime sleepiness (folks, that is an actual diagnosis). The suggested approach is to add a prescribed stimulant during the day to see if that helps me to maintain wakefulness. I’m a little nervous about the new strategy, which basically means I take a drug to sleep and a drug to be awake (better living through chemistry – yeah!), but we are starting off with the mildest stimulant they can prescribe me to see if it helps. If it doesn’t, they’ll likely try increasingly stronger stimulants until we find something that works.

I’m really hopeful that this will work for me because I have felt so damn miserable and exhausted the past couple of months. Feeling like I would do anything for a nap makes me feel guilty and sad to be missing out on time with my beloved child and partner, and trudging through the day this way makes me a less present and enjoyable partner and mother. I’m also hopeful that the new medicine will allow me to gradually taper the caffeine consumption, which I think is making me anxious and agitated at times.

Fingers crossed!

6 thoughts on “More-than-tired mama

  1. Oh my gosh, Tyler has this too, but he doesn’t take any medications for it . Well he does take ADHD meds (which are a stimulant). Tyler always feels most awake and alert at night, and feels very drowsy during the day. He has so much trouble working during the day, and has to take several naps. He never sleeps for more than 2-3 hours at a time. If he sleeps too long, he feels like a zombie and it takes him hours to wake up. It’s very hard on our relationship, and now added in with the baby, he has to be awake certain times in the morning to bring her to his mom’s house, and he has to adjust his schedule, it’s quite tough! And the only treatment are those strong medications, which aren’t so great anyway!
    So sorry you have this!

    • Thanks! It’s really rough, as you know. The meds are also super expensive and not all insurances cover them. The weirdest part is that I have to have the medication shipped to me and I have to sign for them with my ID (because they’re so highly regulated)… well, I’m not home during the day, so I have the date rape drug shipped to me at my DVSA job. So. Bizarre.

  2. Wow, this sounds tough. It’s hard enough to deal with all of the sleep disruption that comes along with being a new parent, but adding these complications sounds really difficult. I hope the new plan results in as sustainable solution.

  3. Just found your blog (via BC CD group) & noticed this post – I have a very similar condition though milder from the sound of it. I found a low dose of Ritalin (much less than my ADD hubby takes) during the day was a great help, just FYI. Best of luck managing, it can be a big problem!!

    • Thanks for the encouragement! I actually just took my little red pill. I’ve found that it has been helping quite a bit. I also have time now to take a short nap in the afternoon and between those two things, I really power through until bedtime. I am able to be a lot more productive, use a lot less caffeine and don’t feel as helpless or miserable most days. I’m so thankful!

  4. Pingback: Mama time | The Falco Project

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