Sunday, February 12, 2012

The Dysautonomia Dementors and POTS Patronus

I love Harry Potter.  I love the books, I love the movies, I love the brilliant world created by JK Rowling.

My life right now is pretty consumed by POTS and Dysautonomia, so I find myself making comparisons and analogies everywhere I look.  Which is actually not many places, considering I am home bound at this point - but does involve lots of movies, online stuff (no porn of course- I swear!), and books.

So when I last watched Harry Potter and the Prisoner of Azkaban (while in the hospital), which is when we first see the Dementors, I burst into tears.  I saw that dark black ghostly scary looking thing sucking the life out of Harry and them him passing out with the screaming noises in the background - and all I could think of was how that was how I felt day in and day out.  That was at the height of my "dark times", but I think many people struggling with dysautonomia and other life force/energy-sucking diseases can relate. POTS, Dysautonomias, CFS/ME, Fibro, Lupus, people going through Chemo, RA, any of the "spoonie" illnesses - we all struggle with days when the Dementors swoop in and gobble up every last bit of energy, happiness, and the ability to move and function.

Times like these, I usually have "overdone" it the day before, or even a few hours before - and it all catches up with me and my body shuts down.  Literally just stops working.  And overdoing it (in my current state) involves playing on the floor with my son for 20 minutes, or wheeling into the kitchen and standing up enough to make coffee, or rocking the baby for 30 minutes while in bed when she's fussy.  Showering is the real "Dementor's kiss" of death for me - warm (no hot allowed!) water causing vasodilation (veins dilating) coupled with arms raised above heart level to wash hair making my heart rate faster equals total body shut down.  I have to plan my showing carefully.

This body shut down - or the lifeless I've-been-attacked-by-a-Dementor feeling is pretty unreal.  I've never had it this intensely before, even after all these years of dealing with POTS.  I will literally feel it coming on, know I need to be laying down, and then my muscles stop responding and working.  Then I start shaking. Its an internal shaking feeling as well, similar to adrenal surges, all wrapped up in a nice ball of pain.   All I can think of is how I must close my eyes, must sleep, and hope I wake up with a body that responds again. I then pass out and sleep for a few hours, or lay in a semi-conscious state. Just like Harry.  Except I think he woke up faster, and chocolate helps you recover from Dementors.  Oh, how I wish chocolate would fix this with me!

This ties in with the whole Spoon Theory; having to delegate your energy to avoid this horrible crash.  My (and other "spoonies") life revolves around picking and choosing what activities to do for that day - and everyone has a different tolerance level.  I used to be able to work 16 hour days, or push through making flowers for 5 days straight over Valentine's, but would get very sick and need to recover for days after.   Now it's only one to two activities a day keeps the dysautonomia Dementor away.

My POTS Patronus (the spell that creates an animal Harry and the others use to defend against the Dementors) is currently an Octopus.  No particular reason except that octopi are super cool, and I'm a marine bio geek.  They are the smartest of the cephalapods (squid, cuddlefish, octopus, etc...) and mimic their surroundings to avoid prey animals.  They have 8 legs to get things done - so I'm assuming they are multitasking type-A non-stop workers like me.  I want that back - the ability to act physically the way I feel mentally - and get up and move again to get things done.

What's your POTS (or other Spoonie) Patronus?  Why? What do you do to avoid the crashing Dementors Kiss?  I'd love to hear!



  1. You have no idea how much this meant to me and my daughter. MY daughter is 14, has POTS, and is a Harry Potter enthusiast (to say the least). Anyhow, when I came across this post on Facebook, I knew I had to share with her. Thanks so much. I will ask her what her Patronus is! So sorry you are dealing with this while having children.

  2. Well I expect a report back - I want to know what her POTS Patronus is! Thanks for reading and sharing, let me know if I can help in any way!!! Being 14 with POTS is a nightmare, takes a strong person (and parent!).