Let’s talk about sleep…

One of the hardest aspects of life with Sean is the lack of sleep. I don’t really talk about it unless we are in a place of sleep issues.  I don’t believe in jinxing things, but I swear every single time someone asks me how he sleeps and I say like a champ…we have a rough night. I’m talking about it, so you know what that must mean…UGH!

We went through a terrible spell a few years ago.  He would have 2-3 nights of pretty much no sleep, or at least very little every week. Kelly was still living in Indiana and until Autumn moved here, it was pretty much just me to deal with it. I was obviously still teaching full time being a single parent and it was an extremely difficult time in life. I am very grateful that I no longer have to do this alone, but that post is for another day and another time.

Unfortunately, when the no or little sleep happens, he obviously cannot be left alone. We went through a period of about 4-6 months in which the only way I could get him to chill out a bit and allow his brain to calm down is if I took him for a car ride. Thankfully, we lived with my mom for most of that time and Liam could just stay home with her and sleep. I have been known to swing through the Tim Horton’s drive through at 2 am for a cup of coffee. I guess that’s better than buying something off of every single infomercial watched like my mom used to do when she couldn’t sleep! LOL When Kelly and I were looking for houses, I would take Sean through neighborhoods scoping out for sale signs when it was daybreak and I could see. Today, he wanted me to vacuum at 5am.  This is a very odd request and not like him at all.  We do have a new vacuum cleaner, so perhaps the sound is soothing or something.  At any rate, my main floor is all vacuumed by 5:30am. I guess I can feel good about being a little productive!  I didn’t even wake anyone else in the house up. Perhaps they all find it soothing too.

Sean won’t snuggle.  He won’t chill out on the couch and watch a movie or tv program.  He won’t play on his iPad.  If he’s up he usually wants to eat, go for a car ride, run around the house, jump off anything that he can, go in the backyard, or get into some sort of mischief that often includes soap–usually hand soap, but sometimes dish soap.  So, when you’re up with him, there’s usually no relaxation involved, sadly.   I can’t really complain because at least he lets me sit down.  You might be scratching your head with that one.  Remember that really bad stretch of sleep we had a few years ago before we started treating PANDAS and traveling down the biomedical route? Well, if we weren’t driving in the middle of the night, we were home.  When we were home, Sean refused to let me sit most of the time and he was RELENTLESS about it. I’m sure some people reading this are thinking…refused to let you sit? You’re the parent…why would you allow that?!  Well, let’s just say, it’s REALLY easy to question that or judge that when you are not living it and I’ll leave it at that.

We have come a very long way since then and I am happy to say that he usually sleeps like a champ and at least ten hours a day. Although every once in awhile he reminds me of how hard life was back then by either not falling asleep until the wee hours of the morning, or he waking up way too early–like today.

Sean had his last dosage of abilify on Thursday night. Friday was an amazing day at therapy.  One of the best reports I’ve received in a long time. I was hopeful that the CBD oil was really working some magic. I still have hope for it though because I think his behavior and night waking is because we decided to stop the last half pill of abilify now before I return to work next week.  I am praying he has this hard behavior out of his system before then.  The doctor said cutting abilify shouldn’t affect his sleep, but it has every time we’ve shortened the dosage as we’ve been weaning.  So I guess I shouldn’t be too surprised that we are sitting here in the middle of the night as the rest of the house and I’m pretty sure neighborhood–sleeps!

The older I am, the more difficult it is to bounce back from lack of sleep.  It’s a chelation weekend, so I’ve already been getting up through the last two nights and .  Today, Sean woke up at 3:45am for the day.  That wouldn’t have been so bad if I had been to bed before 1am. I taught four classes last night and then had to give him his chelation cream at midnight. It took me awhile to fall asleep and so it was a 1am bedtime for me. Fortunately, it’s the weekend and I will be able to nap today.  However, like I said, it definitely takes longer to bounce back as I get older.  All of the stuff I had planned to get done or do today will be affected because I’ll nap when I wasn’t planning to and then I will likely feel like junk much of the day.  This will also throw off Kelly’s plans for the day too. Man, I remember in my twenties when 3 hours of sleep would probably be just fine.  If not, I could nap a bit and bounce right back.  Not anymore! Maybe this is God’s way to help me prepare for when I am older and my own body won’t let me sleep anymore.  😉

There is a very good reason that sleep deprivation is a form of punishment.  Everything is harder when you are exhausted. EVERYTHING! I have found that when I have consistent decent sleep I feel like I can conquer the world…or something kinda like that.  However, when I’m desperate for sleep and feel exhausted for long stretches, I kind of want to throw in the towel more easily. Sometimes the littlest hurdle will feel like a mountain. I’m anticipating this to be a short phase related to the weaning of the medicine. I think/hope we’ll be just fine soon.  (Please God– tonight!)

Yesterday was a particularly hard day overall for Sean.  It was rainy which means no pool time.  That’s never good. I was school clothes shopping with Liam so Kelly was left to deal with Sean’s crankiness. He was pretty irritable throughout the day and actually kicked a hole in our drywall going up the stairs. Lovely. I wasn’t home when it happened, but apparently, he wasn’t even angry. It just came out of nowhere. I’d say it’s definitely related to weaning of abilify.  That dang abilify! That’s two holes in our drywall during the weaning of this medicine. We haven’t had holes made in walls since we started treating the PANDAS.  Maybe a few dents, but no holes. I find that depressing as I really try to keep a nice home, but he makes it not so easy sometimes. I’m sure I’ll post more about that in the future.

Thanks for “listening” to me. Let’s hope we are on the upswing of things!

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