Thursday, March 14, 2013

Late night secrets

No, it’s not what your thinking.  Last night when most of us on this side of the planet were fast asleep, my body was busy torturing me. In case you didn’t know I have a neurological birth defect called Arnold Chiari Malformation.  My rare disease causes a host of problems and symptoms too numerous to mention here.  Last night, my Gloves and Stockings syndrome was being downright mean.  I was extremely tired and ready for sleep when my nervous system decided it was time to party.

I first begin to notice a slight tingling sensation in my lower legs and forearms.  It’s the sensation that causes you to stretch.  After stretching you find that you are more relaxed and that there is less tension in your muscles.  That’s just simply not the case for me. Imagine that you found no relief from stretching.  That slightly uncomfortable sensation was still hanging around just begging for attention. Stretching over and over again would not relieve me of this bothersome symptom. Yep, this is the beginning of a really long night.

Now, I will be the first to admit that I am very blessed that I have the most amazing husband. He tried everything he knew to assist me with this difficult situation that I was cursed with.  He rubbed my legs, he doesn’t mind if I put the vibrating pad on high which shakes the entire bed, he puts up with the fact that I lay upside down with my feet at the head of the bed so that I can bounce against the wall.  Unfortunately, last night all of these things failed me and I was just in a miserable state.

So at 2 in the morning I put on my shoes while still sporting my nightgown and began walking huge circles in the backyard. No, Screenshot_2013-03-14-19-44-43we don’t live in the city; so, yes its very, very dark outside. So I brought my phone with me to use my flashlight app. I knew it was cold out so I had put on a jacket.  Imagine the sight…me walking big circles in my nightgown, jacket and sketchers while carrying my phone as a flashlight! I can only begin to imagine that the neighbors were wondering what sort of bizarre ritual I was performing.  Luckily, Boyet did join me in my circle walking ritual with his cell phone flashlight as well.  So there we were in the dark of the night circling round and round the backyard with our teeth chattering. After about 45 minutes I decided I was sufficiently tired enough to try sleeping. I am not certain if it was the act of walking or the cold temperatures that helped settle the nerves in my legs but one of the two definitely helped. Now, this is the part where I wish I could say that I fell fast asleep and woke slightly tired but refreshed. Sadly, I can say no such thing. I did doze a time or two and finally around 8 in the morning I managed to find a few hours of sleep. I am so blessed that my job allows me the flexibility to change my days at a moments notice.  So luckily I did not have to work today. Thank God for small blessings.
When I have a night such as this and my body is all out of sync, I could usually find myself in the mist of a huge panic attack.  But I am extremely pleased to say that my number of panic attacks as greatly decreased since Boyet’s arrival to America.  I am so fortunate to have a husband who is willing to help me through the difficulties of dealing with a chronic illness.  Even though, I will always have challenges like these to deal with having a supportive family makes it a little easier.  I am blessed!

We’re talking about: the American celebration of St. Patrick’s Day.
We’re praying about: that my health remains stable and my attitude remains positive.
We’re laughing about: what a strange sight it must have been to see two inappropriately dressed people roaming around the backyard with cell phone flashlights at 2 am.