Color My World

I have been thinking lately, if I could express dysautonomia as a visual, what would it look like?  Is there an image or a series of images that would convey to any who saw it the awfulness of dysautonomia?

So I started asking myself, what should be conveyed?  The emotions I associate with it are:  anger, depression,sadness, and loneliness.  The physical things for me are extreme fatigue, dizziness, stomach issues, and weakness. 

And what colors would dysautonomia be?  For me, they would be grey, red, and black.  (As an aside, whenever I have a bad day, I try to do some visualization to help me gain strength and for some reason, the colors I imagine for strength are blue and white.)

I wish I were an artist so I could paint something myself.  What comes to mind are mostly either abstract paintings of greys, reds, and blacks, and photos of people. 

I did a little web searching and found plenty of depressing art.  Enough so that I decided to stop looking because it started making me feel more depressed!!  Here is one image below:

Despair by Joyce Ann Burton-Sousa (from the Brooklyn Art Project):



I also sometimes think of the Franz Kafka story "The Metamorphosis" where a man wakes up to find that he has changed into a giant cockroach.  I haven't read that story in a while so my memory is probably suspect but I think the story represents someone who has discovered that he has become a burden.  Sometimes that aspect of dysautonomia makes me sad...that I can't be of much help to others and instead, I sometimes have to rely on others to help me.

Anyhoo...I guess I am feeling both creative and sad tonight and that ended up as this blog posting.  :-) 

I am very interested to hear from anyone who might be willing to share your thoughts on what a good visual would be for dysautonomia.  Or a story or song maybe.  Although we can't move around much, we can still imagine and create. 

Wishing creative thoughts and imaginings to all fellow dysautonomics.

The Dysautonomic's Basic Guide to Grooming

Before I had hPOTS, I used to get up every day at 5:30am, take a shower, and spend another 45 minutes styling my hair, putting on make up, dressing, and doing all of the activities it took to groom myself for going out of the house for work or otherwise.  Some days, after work, I took another shower and went through the whole process again if I was going out that evening.  I loved the relaxing activity of showering and the feeling of being super fresh and clean.  And I'm not young and not naturally beautiful.  I'm not one of those women who can run a brush through her hair, put on some lip gloss and be ready for prime time.  Getting ready for public display took TIME!

Enter hyperadrenergic POTS, and BAM!  Oh how things have changed.  Grooming has now become a dreaded, exhausting, laborious activity that sucks all the energy and life out of me.  My routine now is that I shower in the evenings and not every day.  After I shower, I drink a couple glasses of water and lay down for an hour before I can get up again or sometimes I don't get up until morning.  And instead of the long hot pleasant relaxing and enjoying experience it used to be, the shower is now a frantic race to just get it done so that I can make it without collapsing or having to endure hours of vertigo. 

That is step one of my new grooming routine. 

Here are the other steps I go through when I have to go out.  I call this the "Dysautonomic's Basic Guide to Grooming":
1.  Shower is done in the evening as described. 
2.  Drag self out of bed in the morning, wash face and plug in the curling iron.
3.  Lay back down for a while.
4.  Brush teeth and curl hair.
5.  Lay back down for a while.
6.  Put on make up and get partially dressed.
7.  Lay back down for a while.
8.  Finish dressing.
9.  Lay back down for a while.
10.  Drag self up to leave the house.   Keep fingers crossed that socks match and that make up is actually on and that clothes are zipped and buttoned (sometimes things do get overlooked!). 
11.  Repeat as needed when going out in public.

Sometimes I think that perhaps I should just give up on grooming and not do it at all.  That way, my "look" will match the way I feel AND I will have more energy because I wouldn't have wasted it all on grooming!  I will be more productive at work and be able to attend more social activities.  :-)  Of course, nobody would want me at work or at any social event if I stopped grooming (and my husband probably would not want to bring me to anything) but that's beside the point...

Just in a ranting mood tonight.  Plus I need to take a shower.  Sigh...

Wishing all of you living with dysautonomia, the strength and energy to get through the normal things!