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...
Greg, you have such a kind and generous spirit. You do so much for Linda, she is trapped in a neverending struggle. I hope she can learn to relax her body somehow as this will allow oxygen to flow through and ease the build up of acid.
ReplyDeleteI hope you yourself get moments of peace and that someone is there to care for you too. You are both so strong, I wish you would allow yourselves to not fight for your cause day in, day out, and just give yourselves some time off as I'm sure it would benefit both of your health and wellbeing.
Bless you ! Thank you so much. Yes, what you say is true; our greatest longing is to not have to keep struggling like this but the injustice, the suffering is so immense. Sadly there is no escape, it has invaded every moment of our life together,our effort, most days, is spent on coping and survival.More than two decades have passed; the depths of agony, the wilderness of Very Severe ME, that Linda knows, defies description in its horror and complexity. I am determined to fight back with everything I have got.xx
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