Dinners made...now what?

This week has been a new experience for me.  I have basically been in bed for five days straight now and I am not seeing a change coming anytime soon.  I don't think this has happened since May of 2009 when my Dysautonomia decided to scream "Hey, I am here and you can't ignore me anymore!"

That is the day that I so gracefully passed out in a neighbors front yard while taking a walk with Jedi, my great dane.  Luckily the neighbors called 911, kept Jedi for me when the paramedics took me to the hospital and called Sandy, my daughter, at work to tell her what had happened.  That was the day that changed my life.
 

Syncope, Orthostatic Hypotension, POTS and Dysautonomia were foreign words in my vocabulary.  It had taken years to hear them and right now, along with the words B12 deficiency, they are words that sometimes I wish I had never heard.  But I did, and it's what I have but I have tried so hard to not let any of those words define who I am.  Yes, I faint (syncope) periodically, it started when I was in high school.  I would stand in front of the mirror in the morning curling my hair before school (gotta love the big hair of the 80's) and plop, down I went.

My parents really weren't into going to the doctor so they just told me "Eat something and you'll feel better." and never looked into why I was fainting.

The next time I remember fainting was at my veterinary office.  My dachshund was getting a rabies vaccine and once again, plop, down I went.  That time everyone said, "Are you pregnant?"  I wasn't but I didn't pursue it any further than that.

Then came the heart problems when I was pregnant with my second child.  Every time I stood up my heart rate would jump up to 185-230 beats per minute.  Not good for a developing baby.  That was the first time I heard of POTS (Postural Orthostatic Tacycardia Syndrome). I was told by my doctors to stay in bed til my baby was born, 8 months later, and that it would probably go away after I delivered.....IT DIDN'T.

So the years went by and I pushed POTS to the back burner.  I had kids to raise, learning disabilities to deal with, after school sports to go to, my house to take care of, and then just for the fun of it I decided to throw work into that crazy schedule.  Who had time for POTS????  We found a medication that worked fairly well and I lived with it.  Life was way to busy to deal with illness.

Then in 2009 it all came screeching to a halt that fateful day in May when something called Orthostatic Hypotension reared its ugly head.  I had been warned.  Several of my cardiologists had told me that my POTS could either go away when I reached menopause or go into overload.  It decided on the later choice.  So overload it was.  POTS had suddenly progressed and now included Orthostatic Hypotension (low blood pressure when standing or sitting up that can lead to fainting).  It probably had been there all along with my history of syncope but that we will never know.  No one had caught it til now. 

So that pretty much gets me to where I am today and to the last big word in our vocabulary lesson, Dysautonomia (autonomic dysfunction): A malfunction or several malfunctions of the autonomic nervous system.  You know all those fun little things we take for granted like our heart beating, our blood pressure regulating, the ability to stay warm when cold or cold when warm (temperature regulation), breathing, etc..  Nothing too major just those crazy little things we do to stay alive day in and day out.  Basically my nervous system doesn't work so good anymore and there's not a lot they can do about it.  Apparently the nervous system is a very hard thing to study. 

Since that fateful day in May there have been ups and downs, good days and bad days, more doctor visits and tests then I care to remember but I have always tried to not let this beat me.  Yes it gets me down some days.  Yes it makes me angry that I cannot take my three beautiful granddaughters and walk on the beach with them and teach them the wonder and beauty of tide pools and yes it is hard when Dysautonomia decides to once again scream "Hey, I am here and you can't ignore me!" But Dysautonomia will not win!  We may have to come to some kind of a draw but it won't win.

So today I will stay in bed.  I will consider it a good day, I got dinner made (without passing out, though it was close) and my daughter and her husband will come down and enjoy it with us.  It's not quite as productive as yesterday.  Yesterday I got dinner made and unloaded the dishwasher!  What a feat! But I am still smiling, I am still able to laugh at my crazy giant dogs as they chase each other around the house because we haven't been on our morning walks for almost two weeks (not sure if the house is going to survive 300lbs of giant dogs romping through it much longer but oh well).  Hopefully this isn't a new normal for me.  Hopefully with a little luck and a lot of B12 I will beat this phase of my illness.  If I don't, well then it's just the next phase and we will adjust.  It is amazing the ways that we can find to adjust.  There have been "new normals" at every phase of this and we have adjusted.  In fact there are times I don't even remember all the ways we have had to adjust because it becomes routine.  

So for now I will hang onto my hope that this too shall pass. 

Hang onto my friends because they give me encouragement and something to read and look forward to on Facebook. 

Hang onto my crazy puppies because not only do they give me love and share my days with me they also keep me warm when my body doesn't feel like doing it. 

 But mostly I will hang onto Wil.  He is my Rock, my strength and my life.  He is the

reason that all this craziness is worth it.