Keep Calm, It's All In Your Head...

WEGO HAWM CHALLENGE DAY 9:

Keep calm and carry on. Write (and create) your own Keep Calm and Carry On poster. Can you make it about your condition? 

Um, yes!  Here it is....

#HAWMC Day 8: Best POTS Convo Ever

WEGO HEALTH ACTIVISTS WRITERS CHALLENGE: Best conversation I had this week. Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week.

"We have a great new drug for you to try, it cures POTS and dysautonomia." --Doctor

"Really?  You can't be serious." --Me

"And (dramatic pause), we figured out what was causing all your random food reactions, and you can now eat whatever you want." --Doctor

"This can't be real." --Me

"You will be walking, then running, and able to scuba dive and snowboard again. You'll be able to care for your kids, have wild nights out on the town (and indoors) with your husband, and you can eat out wherever you want." --Doctor

I'm Angry and I Know It (wiggle wiggle wiggle): Day 7 WEGO Challenge

WEGO Health Writers Challenge Day 7: Health Activist Choice! Write about what you want today.

I'm Angry and I Know It (Wiggle Wiggle Wiggle)

Well then, this will not win me any "she has such a great attitude" points, but today I want to write about how much I hate my life and am angry right now.  Because it sucks.  I am pissed, and there will be swearing- oh yes, there will - and you have been warned. This is not a pity seeking post, its an explanation of what life is like, and how you can better understand and be there for any person you know with a chronic - or LONGTIME - illness.  Not to be confused with the flu or allergies you have been bitching about on twitter.

Why I Write About POTS: #HAWMC Day 4

Day 4 WEGO Health Challenge:
I write about my health because… Reflect on why you write about your health for 15-20 minutes without stopping.

The main goal of this blog was to create resources for patients and awareness for the public for POTS.  I had none when I was diagnosed, I don't want others to go through the same.  I write on my personal blog over at Bye Bye Bella Flora for therapeutic and personal reasons, but this site was created to help others, and by doing so it helps me as well.


In my pre-POTS days, I wrote for scientific publication as a marine biologist, and enjoy reading and researching, and hopefully sharing that info with others.  I have no desire to be profound or poetic, I like to link out to others that do that for me.  I don't normally post inspirational quotes like the one on the right.   I'm more science minded - and I want patients and families to have a place to find resources for dealing with everyday life: tools for dealing with family, friends, employers, DOCTORS, and medical professionals as a whole, because my journey has been a bit rocky with the MD's.  

I also have a passion for silliness, and the best way I've found to cope with this ridiculous disease is to make fun of it sometimes.   Laughter is how I have survived the last decade, and especially my nine months of confinement in the hospital, and now seven months at home with no outings.  This blog gives me purpose for now, at least I feel I'm trying to do something, instead of rotting in bed doing nothing. 

I've been a bit lax recently in posting new links and resources because of the new BIG project I'm helping found, and I can't wait to share more with everyone.  The next few years are going to be very exciting, and changes - they are a coming!  For the better.


Sending love and thoughts of upright posture.....
Claire

Day 2: Yoda Does POTS (favorite quote)

Challenge: Quotation Inspiration. Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.

Well, this was a really really easy pick for me - I have an absolute favorite quote that I have both a love and hate relationship with in terms of my chronic illness, POTS.


 Drum roll......

My quote comes from a little green man who has inspired me my whole life. His name is Yoda.

"Try not. Do, or do not.  There is no try."

I even found a nice graphical illustration for the quote:

Why I love this quote:

It's completely true.  There really is no try.  You either do something, or you don't.  I'm not TRYING to oversimplify, I actually AM oversimplifying.   

The definition of try is (according to the The American Heritage® Dictionary of the English Language):

try  (tr): To make an effort to do or accomplish (something); attempt: tried to ski.


Why I hate this quote: 

It leaves no room for excuses, and I admit I still fancy a good excuse once in a while.

"Trying" to me implies failure.  

"Did you do your physical therapy exercises today?"

"I TRIED, but I wasn't able to." 

What that means in my life is that I actually DID three or four reps, felt like my heart was pounding out of my chest and my muscles were spasming painfully, and I stopped.   So I didn't just try, I did it.  I did not fail.  I did not complete the entire task or goal, but I DID something.

If I skipped doing my PT all together, than I did not try, or DO any PT.  And there is nothing wrong with that.  Some days I can't even get out of bed for much of the day, and can barely make it to the restroom.  I have to consider what to spend my limited energy on, as I have a 7 month old that I care for alone while my husband is working, and a four year old that I like to be functional enough to hang out with in the evening when he gets home.

I know that on bad days, "trying" much of anything will land me in even worse shape for a week afterwards.  I have learned to trust my body, and push my limits when appropriate, and DO when appropriate - but I have finally gotten to a place where I am ok with not doing as well.  

And there is no try.    Simple as that.