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Showing posts from November, 2017

Meet Patric Blossom: Living Creatively With Pain.

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I have received so much support, kindness and inspiration from my friendship with other people who are developing their creativity, whilst coping with chronic pain or illness.
So, my thanks go to Patric Blossom for sharing his story and his work, and writing this week's Blog:


Hello! 5 years ago I landed with a splat in the realm of chronic pain and illness. Thinking Dysentery was something confined to the medieval ages, I was shocked to find out it was alive and well and eating my insides! It had eaten a hole through my intestines and what followed was emergency surgery to save my life.
 Over the next 11 months I had multiple hospital admissions, enduring several operations, intensive care stays, long term antibiotic therapy and a questionable future. I was eventually assigned the category of ‘lucky to be alive’ though I didn’t feel lucky at the time, and was sent on my way. I was minus several significant pieces of my small bowel and half my large bowel was gone. My abdomen litt…

Taking Dysautonomia with a Pinch of Salt

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In this final part of this mini series on all things POTsie, I will try to give some idea of how I self manage. 

 To recap-  I had been diagnosed by a Dr. who had tested my heart, and  had done blood work etc AND was experienced in seeing many patients with this condition.  Yup....I had Dysau...Dystau......Dystort......well, anyway....I had this ...er ...problem, and aside from learning to spell the wretched thing, I was going to have to learn how to manage, because, as usual, there was not going to be a magic cure on the horizon.


So this is my list of things to keep in mind, if I want to make the  ' the fainty- wobbly-sicky-horizontal-experience'  less likely:
THINGS THAT MAKE DYSAUTAUNOMIA WORSE: Becoming dehydratedIgnoring hunger pangsStressME flare-up ( be on alert that this makes 'a sag to the floor' far more likely)Any activity that makes my heart beat faster.Sitting upright when my body is begging me to rest flat ( with legs raised)Hoping if I didn't plan for it…

Elephant Down!- What the heck is Dysautonomia ?

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Welcome back to my 'Idiots Guide to Dysautonomia'( that's me that's the idiot, not you! ) 

So how does Orthostatic Intolerance feel? I feel really YUCKY ( to use a technical term), before, during and after. My heart beats heavier.The sudden onset of cotton wool legs feel as if they are bowing out from under me. It is all very unpleasant. Strange sensations in the abdomen, disruption to my vision ( I literally can't see straight). My body craves food, I feel dry and thirsty. I find talking difficult, thinking the words, then saying them is a struggle. After I have got to bed, I feel very ill, a sensation not unlike the high temperatures of childhood fever. I can't move, even raising my head  onto the pillow is very difficult.
It is all so sudden...and no it is not a panic attack- those feel very different. With Dysautonomia my energy is too low for panicking, or even forming cohesive thoughts. I feel as if I am slipping away....but I don't really care either wa…