Nothing works

I am still always tired 😭😭. I take the extended release Adderall and it’s only 10:45 am and I’m ready to collapse into sleep. It’s such a strong pull my forehead feels heavy. I’m really over this. I don’t want to do that crazy strong drug, even though all the narcolepsy forums sing it’s praises. I just don’t feel comfortable on it especially with children I’m responsible for. 

Every time I speak to my Dr I feel like she’s thinking, uh here we go again. But if something isn’t working then why keep using it? She is super nice and helpful, I just feel like a failure every time I go back to her with a “nope still not working”. 

Here I am just waiting for lunch time to come so I can take a break. I know some think a lunchtime nap sounds amazing but when you feel like you NEED it every day, sometimes multiple times a day it’s not fun! You feel bad about yourself. You feel lazy and helpless. You feel like a quitter and I am NOT a quitter. 

Uh pray this gets resolved soon. 

Who knows if it’s working… it’s break

Last day of Christmas break. My sleep schedule is so screwed up right now you would never know if the meds are actually working. It’s healthy for everyone to have a sleep routine/schedule. Your body learns what it needs to do and when. The bedtime routine prepares your body that sleep is coming. We sleep train babies, why not us? 

So especially with New Year’s Eve and staying up late I’m all kinds of messed up. So is the Adderall working? No idea. Still needed a nap but I’m not surprised. Today (Jan 2nd) I could not pull myself out of bed before 10 and I honestly could only barely do it, but did it because I knew my husband was downstairs waiting for me to wake up. Buuuttt we also went to bed around 1AM (thanks Yellowstone binge watching). 

So I’ll let ya know later this week. For now I’m fighting the sleep fog. Zzzzzzz

Adderall round 2

So met with my dr yesterday. Honestly I had a really hard time staying awake to wait for the 1:40pm appointment. The hubs would be talking to me and it was painful trying to focus (not because of him, he was talking about getting me a new couch! I’m all in for that!). The pressure above my eyes feeling like my eyebrows are trying to forcefully close my eyes was like the worst sinus pressure you can imagine with out the headache. I just NEEDED to sleep but I couldn’t. Fast forward to 10pm last night. I hadn’t had a nap all day. Was dying for one earlier. Now I CAN’T sleep. I’m ready to stay up all night and binge watch TV. 

We spoke about one drug option that would in theory make me sleep so good and deep that I would finally get quality sleep so I would be awake the next day. BUT that drug is compared to the date rape drug basically. And I have children. I can’t be completely passed out and unresponsive when I have kids. Not to mention the thought of it freaks me out. No thank you. 

So back to the Adderall conversation. It worked pretty good during the day. Until it stopped working at around 4pm. So that was the extended release Adderall. I’m going to take that again. Then when I feel the crash coming I will take an immediate release Adderall to get me through the rest of the night. 

We’ll see. Currently I could take an amazing nap and it’s 12:30 in the afternoon. But I’ve been sitting around doing online shopping most of the morning so that’s definitely a factor. 

Pleasant dreams, I’ll keep you posted. 

Can’t stay awake

I can’t seem to find the energy to stay awake. Yesterday I took a 2 hour nap. The whole last hour of it I was in a fog between asleep and awake. I could hear everything going on around me but I physically could not pull myself out of sleep and make my eyes open. It’s an exhausting state of sleep. Later that night I had no problems going to sleep because after that nap I stayed tired. I think part of the exhaustion was triggered by my sadness. A fox got into my chicken coop and killed all my chickens. It was awful. 

Today I slept until 8am and got up to go watch a Washington Capitals practice. It was amazing. Driving home all I can think about is how I really want a nap but if I take one Chris will be mad and disappointed. That’s pretty much my life all the time, planning when I could possibly schedule a nap in and will I be able to keep up the energy until then. Walking around helps (so car rides suck) but it doesn’t get rid of the brain fog pull to need to sleep. 

Hopefully my dr and I can come up with something better tomorrow since the last 8 or so medications haven’t worked. 

Part 2… now what

That last post took me a few days to write. My focus and energy are shot. 

Took another test in 2021. Yeah I have ADD too. Apparently having narcolepsy and ADD is pretty common. Whatever. Just tell me what I don’t have at this point. 

So now what? Well it’s time for meds. Apparently they don’t just have meds that help you sleep, but also stay awake. Promises promises. 

The first time I took Nuvigil it was life changing. At least until my body got use to it and it stopped working. I was completely taken back with this feeling of wakefulness. I wasn’t wired, I just felt like for the first time in my life I didn’t need a nap. Until I did. So we switched rinsed and repeated. Still are. Still haven’t find that special cocktail yet. 

We’ve tired different stimulants. Some adderall. Now she wants to move onto some heavy stuff. I’m not sure if I’m ready for that. It’s a lot of regulations and restrictions. But I’m also tired of being tired. I’m tired of feeling like I’m sleep walking only to then try to go to sleep at night and insomnia hits along with ten plus awakening periods (on meds). I’ve been crashing hard this last week. Had to stop taking the latest trial because it wasn’t helping and it was making me moody as hell. 

It’s hard. I want to be there for my family in every way possible but I just don’t have the energy. At work if I give a presentation, I’m done for the rest of the day. Simple things take literally all my energy. And knowing that gives me a lot of anxiety this time of year because we all have a week off to spend together and I’m worried I’m going to ruin it all by napping. 

But I still wouldn’t trade this diagnosis for anything. Yeah I would trade having narcolepsy, sure. But since I have it I’m so glad to be diagnosed because this means that I’m not the lazy, forgetful person I use to think I was. 

A fresh start… well fresh is reaching

In October of 2020 I was diagnosed with Narcolepsy. Not something I can say I saw coming but the more I learn about it and think about my past and present the more it makes sense. 

I’ve always been tired. It’s been a joke among my family and friends that I could sleep anywhere at anytime, and it’s true. Going to be in the car for more than 45 minutes? I’m taking a nap. Sitting at school in a class for more than 30 minutes? Gonna take a nap. And when I say I’m just going to close my eyes for a few minutes, I mean I’m going to wake up 30-40 minutes later with drool on my face and a dream to tell you about. 

I have depression. All the women in my moms family have it. Figured most of my issues were do to that. Told so many therapist how tired I was and most could get me on a “good enough” level that I thought I was fine. I mean I’m a teenager and growing, I’m tired. I’m in college and stay up late and party, I’m tired. I have a new grown person job, yes I should take a nap as soon as I get home. I had kids, of course I’m tired. Eventually though I ran out of reasons. My kids sleep through the night. I take a nap every lunch. I go to bed at 9pm!!! And yet I’m still always tired. My tired is a I can’t even imagine switching the laundry, much less trying to be a working mom. 

So at my therapist encouragement I went to a neurologist. We did some at home test. Yep, sleep apnea. Did the CPAP. Technical results came back favorable, but I was still sooo tired. Turns out also, you’re not supposed to wake up 10 times a night. (Apparently according to the data I was waking up 2.0+)  Also dreaming with that many awakes, not normal. I could wake up, go to the bathroom and fall back into the same dream. 

Once we got through all that I had to do an all night and day sleep study. You go to sleep with wires literally everywhere. All over my head, chest, legs, and up my nose. Don’t worry I still slept all night. They wake you up, you stay awake for 2 hours then you can nap. You have 15 minutes to fall asleep. If you do then they let you sleep for 2.0 minutes. Repeat 5 times. Yep. Fell asleep every time. Also hit rem. 

So guess who got diagnosed with Narcolepsy 2. That means I don’t have attacks where I fall into a sleep without warning. That’s type 1. I am just extremely and overly tired all the time. And don’t ever sleep restfully, despite all the lovely dreams. 

Now what? I’ll let you know. 

Being a Mom is overwhelming

No one tells you that there will be days where you sit and cry about everything you have to do. Or perhaps you don't cry, you just sit there staring at the wall or your phone knowing you should be switching the laundry or cleaning the kitchen, yet you can't pull yourself from doing nothing. You are so overwhelmed by the sheer amount of things that need to get done you're paralyzed to do any of them. Sure you would feel better if you just got one thing off your list, but that list would still be full, it will ALWAYS be full.

Yesterday my son was sick, minor sick. Sick enough I had to stay home with him, but not so sick that I was cleaning up vomit. I had to take off from work (add that to the list of things I'm behind on), but figured I could still be productive. I organized my kitchen. I got so sick of seeing just stuff everywhere that I finally organized it. I went through cabinets and threw out expired spices and old Tupperware. I made a pile of donation items, like the 394,291 cups we seem to accumulate. I even wiped off the front of most of the cabinets and cleaned the counter tops. But as a Mom, do you know what I saw? The floors that I didn't touch, the drinks that still have no where to go, the lunch boxes on the counter, and then I turned around and saw the rest of the house. At this point I wanted to sit down and drink wine. But, I didn't, I did laundry! I put away laundry in my kid's rooms. But you know what I saw, two more rooms that are in need of purging, another laundry basket of sheets, despite doing 3 laundry baskets of linens the day before.

I get kids are messy, I get we're a busy family, but why can't I ever have or keep that feeling of accomplishment? I feel like I need to take time away from work to even get close but at the same time I want to give up because I know it will last for a day, MAYBE a week if I'm super lucky.

All the pressure from Facebook and Pintrest doesn't help. Here's a list to help you keep on top of things, yet that list often is for stay at home Moms or for a Mom that isn't super busy, or better yet a Mom who doesn't sleep. I often wonder if I should just forgo sleep to stay on top of things.

I have two happy (most of the time) kids. I feed my family, I take them on fun adventures, I try to make sure they have clean clothes (even if they are digging in the laundry room for that days outfit). I try to keep the dust bunnies and dirty dishes to a minimum. But I feel like a failure. You go to your spouse to vent and they tell you that you're over committed and you need to not do so much. But all you hear (even though they don't mean it this way) is "don't hang out with your friends or don't do anything fun, instead stay home and clean". Yes, there is a bit of adulting to do and you must stay home and clean sometimes, but you know it would have to be all the time in order to stay on top of it.

I can't stay home all the time, I need people, people are my life source. Well them and church. I can't stop bible study, I need those ladies and the clarity they give me through the Word. I can't stop PTA, there's only like 10 of us anyway so if I don't do it who will? I like being connected to the school, since I work full time and can't be more of a presence. I can't stop camping, we're making memories and we spent a lot of money on this camper, we need to get our value!

BUT now I'm failing family. I'm not spending enough time with them. My parents moved up here to be with me, not never see me. My Mother-in-law LIVES to take care of us, not be pushed off until who knows when. It's hard. It's a struggle. It's overwhelming.