Showing posts from September, 2011

Stonebird Autumn Art Exhibition 2011

Stonebird announces the launch of its online 2011 Autumn Art Exhibition , featuring works by  the  author of "  Missing: A life broken by Multiple Chemical Sensitivity " Eva CaballĂ© and Greg and Linda Crowhurst, in order to raise awareness of the atrocious hidden suffering of Severe ME and Multiple Chemical Sensitivity :  The work will be on display at the  ME and Fibromyalgia International Conference in Ireland on Oct 9th , hosted by the Academy of Nutritional Medicine (AONM)  and the Midlands Fibromyalgia Group; please see :  for more details.

Hop & Moon Suite

How do you help someone with Severe ME ?

Stonebird : How do you help someone with Severe ME ? Linda and Greg Crowhurst 13 th Sept 2011 First and foremost you have to remember that the person with Severe  ME does not react to the environment in the same way that you, a person without ME, does. The environment is hostile and assaulting, normal things that you would not even notice or would enjoy are too much, for the person with Severe ME : Noise hurts. Light hurts. Movement hurts. Food hurts. Music hurts. Chemicals hurt. Cleaning products hurt. Perfumes hurt. Contact hurts. Questions hurt. Information hurts. Movement hurts. Relaxation hurts. Rest hurts. Exercise hurts. Computer screens hurt. TV hurts. Talking hurts. Radio hurts. Interaction hurts. Demands hurt. External expectation hurts. Clothes hurt. Touch hurts. Trying to help, hurts. Everything you do can hurt and make that person hurt, can make the person more ill, can deteriorate their physical health. However dreadful their life is, you have to remember you can m

The Matrix of Truth

Stonebird : Speak Your Truth Greg Crowhurst 9th September 2011 Under an intimate, dim, glow, last night,  because she is too light-sensitive for bright lights, a world-class biomedical Consultant, two Doctors and a Perrin Practitioner , crammed themselves into our long, narrow kitchen , finding themselves  a  chair, if they were lucky, a stool,  or just somewhere to lean, while my wife listened , through a half-closed door and layers of agony, in the adjoining, darkened living room.  The discussion was electric, alive with ideas and suggestions of possible  ways forward, referrals that will be made,   for a woman too severely affected to be even touched . All that happened -  is happening - because 17 years ago, my wife spoke the  truth that  she is ill. At first I struggled to believe her, but eventually I heard.  Then we fought , painful is not the word,  against the  mountain of  heartbreaking prejudice, that surrounds ME,  for many years to find a good GP- and he heard

Letter to my MP re the Health Reform Bill

MPs are debating the Health Reform Bill. If you possibly can, PLEASE contact your MP and urge them not to support it . Here is my letter : Dear..., As you may remember,  I care full time for my wife who has Very Severe ME; we are  very worried  about the possible implications of the  Health Reform Bill, which , in our opinion, is focused upon  choice limitation, demand reduction and profit generation, rather than patient need, especially the needs of the most frail, disabled and vulnerable,  and are writing to ask you to oppose it. The reforms  ,which appear to be  based upon  a privatised ,US “managed care” system,    will result, in our opinion,  in the tragic  situation where    those who pay or are insured will get a better service than those who do not. We are particularly concerned that  GPs will  be given the power to choose which services they provide in local areas , this means that a person with ME , if they receive a service at all, might not be able to get access

The Line

There seems to be a line  that most people will not cross friends, neighbours, family, health professionals even, government officials. They accept I am ill to a degree but simply do not want to know or understand how ill I really am or how they affect me nor how they can relate to me in an honest way, acknowledging  the horror of my existence seems beyond the personal capability of most people. They simply do not want to see, hear, feel my horror and torment so they pretend it does not exist and ultimately that I don't exist either.  Linda Crowhurst 5th September 2011