Courage and dysautonomia

To paraphrase Mark Twain, "Courage is not the absence of fear but the ability to act in spite of it."

When you have dysautonomia, having courage is a given because it can bring much fear into your life.  When you don't know how your body is going to behave, it can be a terrifying and anxiety ridden experience to go anywhere in public.  My own personal outings have included collapsing alone in a Walmart, sitting almost prone in work meetings because I was so dizzy I could hardly sit upright or stay conscious, and not being able to leave an event because became I too weak.  These are all humiliating experiences and real confidence busters for going out! 

This week, I'm switching medicines for the fourth time since my current protocol isn't working well.  It took me a week to work up my courage to do this.  Every time I try a new medicine or withdraw from one, it causes an immediate 2 week period of complete collapse followed by a slow recovery.  Extreme dizziness, fatigue (where it feels like gravity is 100x greater than normal is pulling down on my body), and stomach issues (vomiting, etc) are the norm for me during each medicine trial.  To get out of bed is an ordeal and I usually have to crawl to get from room to room.  This makes is extremely discouraging to keep trying things to say the least.

All this has also wreaked havoc on my job which creates more fear.  And then there's the fear of never getting better, the fear that friends will tire of you, etc.  The list of fears can be endless and overwhelming. 

It just occurred to me that having POTS is like it's Halloween every day!  :-)  (because of the fear...)  I know, another bad joke. 

So I come back to Mark Twain's quote about courage.  I think to live successfully with POTS you have to learn to accept living with fear, but you don't have to let it defeat you.  Living with POTS takes courage, lots of it!  In terms of POTS, I think of courage as being to get out of bed on a morning when you have extreme vertigo.  Courage can be taking a single step, or maybe on a good day, courage can be making a short trip to a grocery store. 

In other words, courage with POTS is really just carrying on with life sometimes.  POTS sucks... there you have it, and it causes all kinds of fears.  But this is the life I have to live and I choose to get up every day no matter how bad the day and do as much as I can each day.  I also try to find something every day to be thankful for, no matter how small.  Today I saw a hummingbird moth and I took it as a sign that tomorrow will be a better day.  Probably wishful thinking but it's OK to indulge in wishful thinking.  :-)

My wish for anyone living with POTS would be for it to disappear!  But if it won't, I wish you the best day you can possibly have each day and applaud your courage in living with dysautonomia. 

Dysautonomia: it's not for the faint of heart!

I had three good days in a row this week!  Woo hoo!!  Each time that happens, there is a little voice in my brain that says "Maybe it's really going to end!".  But so far, it hasn't and yesterday, following the three good days,  I had a REALLY BAD day.  My blood pressure was high and erratic all day, I had extreme fatigue, had the dizzies, and threw up in the morning.  I managed to drag myself into work in the afternoon but almost collapsed several times.  In addition, it was one of those work days where things didn't go smoothly. 

But when I got home, there was a little gift waiting for me from a friend (and fellow Toledo POTS lady). I opened the box and this pin was inside:  

And although my day was so very very bad, I laughed out loud at the pin and immediately attached it to my top.  It reminded me that humor can be found in the darkest of times, and also that people who care and good friends and family are the best medicine there is for the soul.

I plan to wear it often.  

Thank you Christina! 

Celebrities and POTS

It is common to hear a celebrity speak up about an illness due to their own experience with it or due to a close friend or family member who has the illness.  I decided that I wanted to see if I could find any celebrities with hPOTS.  I did a search on several variations of "celebrities with POTS" or "POTS and celebrities" etc and not suprisingly, discovered numerous sources of information on celebrities who smoke pot!  :-)

I'm sure that if you have POTS and are reading this, you can relate to the kind of awkwardness you feel when you try to explain it to someone.  You can either state the whole long name (and add "hyperadrenergic" to the front of it if you have h-POTS) and find people's eyes glazing over before you finish saying it.  Or you can say, "I have POTS" and watch them look at you as if you are a little loony.  Which you actually are sometimes due to the POTS.  

But getting back to the celebrity search...
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As I pretty much expected, I could not find any confirmed information on a celebrity with the hyperadrenergic form of POTS.  I did discover however, that Greg Page, one of the founding members of the children's band "The Wiggles" has POTS.  Wikipedia posts this article about him: http://en.wikipedia.org/wiki/Greg_Page_%28musician%29.  

I also saw several references to the late actress Brittany Murphy as possibly having had POTS as well as her brother but could not confirm it 100%. 

And finally, I read that the series "House" did an episode where the mystery illness was POTS.  Here is the wikipedia article about the episode:  http://en.wikipedia.org/wiki/The_Choice_%28House%29 .  Although the episode was not one of it's highest watched, at least it may have raised awareness of POTS for those who saw it.

So any celebrity who is reading this, if you need a cause to support, there aren't many (none so far) takers for POTS or hPOTS so you would be the first! 

Oprah or George Clooney...who I'm sure are reading this...we need you!!