Greg and Linda Crowhurst (August 8 th 2013). Synopsis Paralysis is a symptom that is rarely highlighted in the literature for ME, yet is found amongst the most severely ill ME population and even some of those not so severely affected. My wife has experienced it for almost 2 decades, without adequate exploration, alongside exposure to denial and dismissal, ignorance and neglect as well as harmful treatment. We wanted to find out if there was anyone else with a similar experience to my wife's or if she was a rare and very severe case. We wanted to highlight the seriousness of this symptom and ask why it is being ignored and down played not only by the medical profession, with its inappropriate focus on fatigue and the psychosocial response, but also by the main charities, none of whom, flag it up as a main symptom. This qualitative research study indicates that there are significant others experiencing apparently similar paralysis and that my wife is not un...
How awful an experience,but hard as it is,remember this tells you more about that man than you or Linda.Karma will prevail as the Universe must balance itself out...what one gives out,you ultimately get back....I feel your pain,in every sense.The builder will leave and as ever your amazing strength will see you through.Think of the kindnesses which good people have shown you. Xx
ReplyDeleteDear Maureen, you have shown us that people do care, are incredibly kind. Your recent reaching out, your love,your ongoing support and concern, means the world to me xxxxx
DeleteDear Maureen, you have shown us that people do care, are incredibly kind. Your recent reaching out, your love,your ongoing support and concern, means the world to me xxxxx
DeleteSo sorry to hear you were treated this way Greg. I only know you from our online interactions, but feel the total injustice of the comments on your behalf. Thinking of both you and Linda, and wishing for better times. xx
ReplyDeleteIn my experience over 30 years of being debilitated by M.E. the greatest pain is not the physical but the beating the heart takes. It makes me acutely aware of the value of human kindness and the hell we inhabit in it's absence.
ReplyDeleteAbsolutely -"the beating the heart takes", how beautifully expressed. Thank you so much Willo.
DeleteWillo so profound what you said.That wisdom comes from the searing heat of the suffering of this vile illness for decades.....just yesterday,I experienced that "beating the heart takes"but then the kindness which gets us through another day...I wish you,Linda&Greg and all ME sufferers more kindness ......especially from the medical profession in the form of proper research,care then a cure.
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