Wednesday, April 6, 2011

Dysautonomia - the diagnosis!

Hi. It has been ages since I blogged but life has been difficult. The wedding was perfect - as is my wonderful husband. I have left behind Bethany Clague and am now Bethany de Legh-Runciman. I also seem to have left behind ultrawalking and ultrarunning. I have dysautonomia - an imbalance in my autonomic nervous system. I have 20 different symptoms from head to toe mimiking 11 different misunderstood diseases. Chronic fatigue, IBS, orthostatic hypotension, menopausal-type symptoms, shaking seizure-type episodes, pins and needles, restless legs.....on it goes. There is no real treatment, no cure but one day it may go away. I have had episodes of it for 16 years - this episode was brought on by the flu I had at Xmas. I am too unwell to run. At times all I can do is sit watching TV. I find it hard to read at times - trying to use my computer is not easy. However the "well hours" are getting better. But the "bad hours" are scary, unpredictable and there is not much help. Ernie, my Mum and my GP have been very supportive and understanding. Medical doctors have been useless as the tests have had have been normal as nerves cause the symptoms. It is a physical not psychiatric illness and is not caused by craziness but will make you crazy. This episode could last 2-4 years - I am adapting to a more sedentary life. Lots of people thought I was stressed out by the wedding - how wrong they were and I knew it. To be told that I should not marry Ernie as it was subconsciously making me ill was not easy to take - it was hurtful and so wrong. Ernie is my life. Without him i would not be here - this is a horrible, unpredictable and debilitating illness. Does anyone else have this illness? I feel very isolated by it. I have been told i am a "health and safety risk". controlled fainting episodes blight my life and are embarrassing. Any support from anyone would be welcome. I do not know when my next blog will be - I want to live a normal life. I want to feel well all the time. i want to run again. Bye, Bethany.

1 comment:

  1. Hi Bethany

    I really don't know what to say ... it makes me feel depressed just reading your plight. But, as someone who has battled major illness (three times now) and won, I know how hard it can be. I guess the best thing would be to learn how to manage the symptoms and make running a pleasurable experience again.

    I'm really, really happy for you though regarding your wedding and I do hope you'll be able to run again.