Tuesday, April 1, 2014

Cruel Sleep

If any of you have been following Our Life for while, you know that my health isn't exactly the best. It's not because I don't exercise or eat right... definitely not. I don't drink alcohol. I don't smoke. I don't do illegal drugs. I eat well and I eat healthy, pretty much everything I eat is made from scratch or is a whole food. I exercise 5-6 times a week anywhere from 20 - 75 minutes which includes cardio and weights on the longer days. I take my vitamins and other supplements.

But, there are still issues I can't seem to get rid of no matter what I do to stay healthy and happy.

I have to exercise everyday, not only because I want to keep my weight down, but it really helps keep depression away and keeps my back from freezing up in pain. I also have hypothyroidism and that just adds to the issue of maintaining a good weight. So my exercise is therapeutic, not just physical.

I eat well because I grew up on home made food and fresh fruit and veggies in season so that is just what I have grown to enjoy. I've been trying more often to add more veggies to my diet--that's where my fancy blender comes in handy--throwing a couple handfuls of spinach and celery with some oranges and a banana make for a great lunch/snack.

Sleep... I've never been really good at that. Anxiety and depression have always made sleep an issue when I was in my teens and younger. Then I had children with Fragile X Syndrome...


Not all kids with FXS have troubles with sleep, but many do and my 3 are in the category of being able to stay up all night or falling asleep and then waking with night terrors. Thanks to Melatonin and Chlonidine we have had many more normal nights of sleep for the last 6 years.

Now, though, I am just tired ALL THE TIME. No exaggeration, seriously. I could fall asleep anywhere, any time and that has never been me. Ever.

Fighting off sleep all day every day is not easy or fun.

I don't recommend it.

Maybe I don't sleep well because of  the extreme pain I am in 95% of my life because of my back. I can't toss or turn unless I want to wake up to concentrate on how I'm moving or move anyway and be awakened by the pain. I recently had another MRI and some x-rays done revealing that my disc is no longer herniated, (yay) but has degenerated into pretty much nothing (boo) and my spine at L5 and S1 is basically bone rubbing on bone. (Can you say, "owie!")

Or maybe I have sleep apnea like my dad. They say it is hereditary. I guess he has it really bad.

So if I am going to find out more about my back, I guess I should find out why I am so tired. Maybe they are related...

Which brings me to the point of this post:

They have sleep studies to see what your troubles are when you are sleeping. It is quite an amazing thing if you think about it.

Did you know, though,  that sleep studies are cruel and misleading.


You just don't do this to a mother of 3 children with FXS.

Tell them they get to have their own private room away from children and hubby all night long.

Ask them to be there at 8pm, which makes us think we actually get to go to bed early and sleep in the next day because you arranged a babysitter to get the kids off to school after Daddy goes to work.

Lead you in as if you are staying at a hotel and show you to your room which is fully equipped with a beautiful bed, dresser, curtains and even a comfy chair and your own TV with all the remotes to yourself.

Then they invite you to go ahead and get in your pajamas and relax while watching TV or whatever until they can start getting you ready for the test.

All the bliss ends right there.

Just when you get comfortable, in come the nice nurses with the electrodes, cords, glue, scrubbers, and various other attachments.

You think to yourself, "surely they aren't going to attach all of this to me..."

After an hour this is what I looked like:

I don't even want to count all the cords coming out of that box, because they were ALL attached to me! All of them.

But, look, I'm staying positive, I still have a smile on my face. I'm thinking, hey, I look pretty good with all these polka dots on me. I think it's kind of funny so I just have to take a picture and stick it on Instagram.

They said that I couldn't go to sleep until 11 so I tried watching some TV while waiting for my curfew.

We don't have TV service in our home. Just because it's too expensive and just a lot of stuff we don't want to watch. So we do the Netflix thing.

Whoa! TV. How many channels do you think we need? By the time I finally flipped through the 130 available channels to settle down and watch something that didn't include Thomas the Train, Elmo, Pokémon, or the Wizards of Waverly Place.

The nurse came in to get me all set up for bed. 


She added another element not pictured above and that was the oxygen nose tube-type thing that didn't actually send in oxygen but monitored the breaths in and out of my nose.

Finally with electrodes, tubes, wires and a big gray box for all the wires to hook into securely it was then fastened around my neck and shoulders, it was time for bed.'

I laid there, almost laughing.

Then I jumped as a loud voice chimed in above my head into my room. The nurse was now talking to me over a speaker above the bed. I startled a bit because I wasn't ready for the noise. She proceeded to ask me to blink my eyes, look sideways, breath in and out, hold my breath, breath out and in once, wiggle my feet, wiggle my toes and hands.

Finally. Sleep.

Ha! Nope. Not with all this stuff stuck to me.

I don't know if I slept really. I just remember being awake and trying to find a comfortable way to bare all these cords and sticky electrodes while sleeping.

I remember somewhere in the middle of the night I had to pee so bad but just did not want to deal with the nurse having to unhook everything... so I suffered for the rest of the night. I am sure the whites of my eyes had turned yellow.

Then... sleep. Deep sleep. Not even knowing I'm asleep because I am so asleep.

Lights on at 6:00 am.

This was no vacation for mommy!

 Can you see the bloodshot eyes!

And to cap off my one night stay at the Sleep Study Hilton when I was needing to use one of the public bathrooms to relieve my anguish after a full night of holding back I walked in on an old lady pulling up (or down) her pants.


Maybe she got about as much sleep as I did and was too tired to lock the bathroom door...

Oh, side note: The results came in that I have minor sleep apnea but they think it is the episodes of my shallow breathing that come so close to being apnea episodes or it may be from the back pain I am in.


Good night.

No, really. I hope you have a good night.

0 remarks: