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.

Camping Trip #4: My Parents choice

Chris and I wanted to be able to take my parents and his Mom on one of our adventures in our camper so we asked them where they wanted to go. My Mom had heard about Chincoteaque and mentioned that, so we looked into it. Well they swim wild horses from one island to the other once a year, however it's in the middle of the week and we're only doing weekend trips. So, we figured we would just go to the island and see them at least. 

We found a KOA, and since I bought a KOA membership we figured we would let it pay itself off (you get 10% of stay and by our second stay we were saving money!). The KOA was really nice, completely shaded, and 10 minutes from the beach! Score! 

We pulled in, set up, and went straight to the pool. The pool that felt like bath water! Gross! At least it got the sweat off. 

We then changed clothes and decided to explore the town some before our dinner reservations! And look what we found!

Ponies! We were driving and passed the Chincoteaque Pony Centre! The kids absolutely loved it!

While Kinsley was taking her turn Parker turned to me and said "Mom, I'm so excited I get to ride a horse, finally my dreams are coming true!" Ha that kid! 

Here is is living the dream apparently. 

For dinner we had an amazing treat from my parents of a crab feast! We're from Maryland so we eat crabs whenever possible, luckily my kids are getting on board with it!

Don't you love his tshirt? 

This trip was especially epic since this little man learned to ride his bike without training wheels! So proud of him! Haven't been able to get him off since!

The full day that we were there we went to the beach. This little man was determined not to go in the waves, then he saw his big sister enjoying them and I couldn't keep him out of them! Eventually chris and I just brought our chairs out to the surf so we were closer, and my ankle was still recovering, and little man thought sure sounds like a great idea! 

My happy place. 

Goofballs. Why do kids enjoy being covered in sand. It gets In the worst places. 

Out there are the ponies they are going to round up. They round up the wild ponies for the swim, to check them over, give them any medical attention, and to sell some off to keep the population under control. 

After dinner at the camper we took Kinsley to a spot she had been "dying" to go the whole time. Build Your Own Cookie. It's a cute food truck where you pick your cookie, ice cream flavor, and then topping! Kinda amaz-balls. 

These are the wild ponies they rounded up. 

It was a magical trip and I'm so glad my parents got to go with us. Having lived in NC until recently I feel like they missed a lot, so it was nice having them there for this! Especially Parker and his bike!!! 

Camping Trip #3: Mom's Impromptu Trip

I didn't think my trip was going to take place until next year, but thanks to my husband's campsite stalking I didn't have to wait! 

HELLO GETTYSBURG! 

 Our Campsite was one of my favorite parts of this trip! We stayed at the KOA and it was wonderful! We had a site that was close to the action yet felt so private! Look at all the boulders surrounding us!

 The kids loved playing on them and it felt so Gettysburg!

 This KOA was exceptional! The customer service was top notch and it was so clean and well kept! Definitely want to return!

The kids had a run in with their first frog, meaning the first one they actually held.  

Parker was a little skittish! HA, it was comical, he tried again after this leap.  

 So we were here for the reenactment weekend that takes place on July 1-3. It was amazing, for me. For the kids it's still out to be determined. They thought it was interesting but hot, and a lot of learning. We found out that they were having church services in the morning and thought this was a wonderful experience, not to mention we were missing our service.

Kinsley met some important people. She and Mrs. Lee bonded over her dress~

 The next day we went on a tour around Gettysburg that catered a little to the kids. Chris and I enjoyed it, the kinds tolerated it for the most part. They enjoyed parts of it, but I'll make little historians out of them one day.

We got to ride in a 1930s bus and it was an adventure to say the least.  

Kids got to learn about how hard it was to be a soldier, i'll spare you the 3 minute long video. 

Kinsley met more influential people. 

The KOA had a lot of really great features that the kids LOVED. This playground was great and we could see it from our campsite so the kids could go "adventure".

Parker asked about every half hour if he could go to the jumping pad.

We mined for Gems.. enter eye roll, the crap kids want to bring home. Yeah we were all so excited that but the time we got home the kids completely forgot about the Gems, so exciting.

I would say this picture is proof of a good trip. Chris and I learned right away that for us to have a stress free evening we let them fall asleep on the table bed watching a moving and then move them to their beds later. 

Gettysburg was a great trip but next time Chris and I are going to go without the kids. It's still a little too much learning with too much heat for them to be interested. 

Camping Trip #2 Parker's Trip

So, when we first brought our camper home we allowed each child to pick a destination. Parker chose Hershey Park! Whoo hoo only two hours from us!

This was perfect because when we bought our camper the dealer gave us a free year to Thousand Trails Campgrounds. You simply pick your zone and then you can camp for free at any TT campground in that zone. What you don't know is that Thousand Trails is the Southwest of campgrounds. No assigned spots. You either get lucky or you don't. Despite the super packed campground we got lucky with a great spot. The sewer plug didn't work, but our neighbors taught us about spider-dogs! It's a win. 

Thousand Trails Hershey was a really nice campground. It was clean and the spots were a good size. The pool was big and clean and it had a nice playground. We saw ducks and turtles, but let's be honest, this trip wasn't for the camping. BRING ON THE CHOCOLATE! 

But first, mommy juice!

This is my White Sangria Concentrate. 

Here's the low down to help your day go better. 

Fill a mason jar with fruit, I used peaches, strawberries and blueberries. 

Pour in vodka till 1/4 full

Fill the rest of the way with white wine (I had pino on hand)

Let it sit in the fridge (I made it the night before we left) 

Once you are ready to drink it you pour it into a pitcher and mix in a jar or more full of Fresca or sprite, depending on the potency you want. I thought it was weak until I ate the fruit, Hello Spring Break College!

Well as you can see we made it to the park the next day and we're still smiling!

Parker is still not a fan of characters. He doesn't want to karate chop them but he also still won't touch them. 

This was our first time seeing the seal show and it was so cute! 

By the end of the day Parker wouldn't even stand in the same space as the characters. 

So Kinsley did us proud. This was for her Daddy. 

This one was for her Sasha! Sasha loves her Rolos. 

And then some shopping and a free tour. 

We spent a lot of time at the water park, but keep in mind I was still injured. Walking around Hershey Park in a boot #allthehills #sohot #killmenow. But I couldn't wear it at the water park and paid for that later. Uh! 

It was a great trip and left us all with smiles, and a few sugar meltdowns.