Sleep and Rest Sleep and Rest

I am not a writer.  There I admit it.  Also, I am not a college grad either.  I am just this chick tyring to reach out to others in similiar positions.  Not just people with PCS, all different illnesses and disabilities.  Trynig to parent normally is challenging but parenting with an illness or disability is exceptionally challenging.

My thought for today was I will be talking about things I hate about having PCS, being stuck in the  house and raising my son.   Gonna try not to make it a Debbie Downer thing.  This may take more than one post. I am also hoping that people without PCS will be able to relate.  Please let me know if this helping or if you have similar experience, please leave a comment or become  member (if that happens, you have no idea how giddy I will be).

Sleep Pattern

They say the only cure for PCS is rest and sleep, rest and sleep.  I get it.  Before I bashed my head on the door, I was a person who loved to sleep.  I come from a family of sleepers and nappers.  I'm sure my friends find it ironic that I have this thing now and get to do the thing I love most.  I'm sure some of them are saying "Snap out of it" or "take a nap".  It's not that simple.

All I have to say is, too much of a good thing is not what it is cracked up to be. I am missing out on so much stuff.  The medicines I am currently taking make me very sleepy.  Sometimes I find it very hard to hold my head up and my eyes are ready to roll into the back of my head.  So I try to keep it together, especially if I am out somewhere.  I usually don't go out since this happened, but when I HAVE to it sucks.  People are talking and I am just trying to get through and not make an ass out of myself because I can't concentrate on what your saying.  I just smile and nod.

Here is another example.  This weekend we had a scheduled play date with my husband's cousin and his little girl.  I couldn't wait to go, I love visiting with them, they are funny and I usually can have a good laugh.  Well I woke up on Saturday and could not get out of bed.  My husband got me some breakfast and I took my medicine and fell back to sleep. The headache and light sensitivity didn't help either.  So I missed the whole day.   I didn't get out of bed until 9:30 at night.  The only good thing was the house was quiet.  They didn't get home until very late.   But, my son had a ball and I missed it all.

I guess this is that fatigued feeling everyone talks about.   Sunday didn't go much better but at least I got out of bed and was able to hang with my son for a while.  We found fun, educational math games on my Iphone together.  He was drawing pictures of birds, and I have to admit they weren't too bad.

OK the biggest issue I hate about this PCS sleepy stuff is the problem that other people have with my sleep pattern.  People tell me that my sleep schedule needs to change.  I usually start my day at 1:30 PM and I eat my breakfast, shower, pick my son up from school, homework, dinner, some play time, then bath and bed for Bubby.  Then my husband reads him a story and he comes down for a little time for just the two of us and usually goes to bed because of work in the morning.  So here am I sitting on the couch until 3:00 in the morning at least.  Yes, there a reason I do this.  The light sensitivity in my eyes is not a great thing.   I try to shield myself from it as much as possible.  The majority of time that I am awake, it is dark outside.  This schedule also gives me the quiet that I need. 

Most importantly this schedule gives me quality time with my son, he gets the best part of my day when I am able to be the most active.

Family members want me to get back on a normal schedule.  I would like to, but on those days that I have a doctor appointment or a test, it usually is early in the morning and then the rest of my day sucks because my eyes are hurting and eventually the headache comes.  So until things improve I will keep this schedule.   I don't know what the big deal is, it is not affecting their lives so don't worry about. I believe they think if I get on a normal sleep schedule this thing will magically be gone.  I hate to disappoint them yet again.

My one friend always told me I was allergic to the sun, maybe now I am.

Anyone else with a crazy sleep pattern?  It's not that I can't sleep, I take something for that.  It's the schedule I am on, no one likes it.  Any one have problems sleeping??  Feel like you are missing out?   I would love to hear from you!  Begging for comments!!!  I scream like a baby if I actually got a comment!!!

Thanks for reading!