What, then, can you do ?
I am weeping here in this place , for it is a place of negation and neglect, a place of horror and denial. I am so profoundly ill that I am hidden away from everyone, because people simply make me even more ill. Interacting in an ordinary way is beyond my physical capability. I am literally damaged by being with people because of a whole raft of physical dysfunctions which are currently overlooked or denied predominantly by the medical profession. There are few who know or will speak the Truth of this devastating neurological disease mistreated as a fatigue syndrome.
My body is so weak my muscles will not hold me up. They collapse. They scream at me. They torment me with pain stabbing crawling expanding and contracting shaking and paralysing me, being upright is a major feat in itself , staying upright is beyond me. Lying down is worse. There is no physical peace here or rest for my tortured body.
I weep at the terrible injustices done to people like me, who are so fundamentally physically ill but misrepresented , misinterpreted, denied fundamental equal rights to medical respect and adequate appropriate health treatment. We are left alone with out the help we need to understand what is going on in our bodies, without the support we need, without the suitable aids and equipment, without the truth of our disease being adequately represented.
It is literally dangerous to have this illness , because so few, if any, people you will see in the health service or social services understand it . They can choose to interpret it in any way they want to , from a mental health condition to a fatigue syndrome to the true neurological disease that it us. Its name is misused. People who do not have ME are labelled as having it. People who have ME are wrongly labelled as having CFS or CF. There is a whole confusion deliberately manipulated by intentional psychiatric interference and influence into a genuine physical disease in which they should have no part.
When you discover the truth of what charades as ME diagnosis and treatment in the UK , you would weep too. It reads like a conspiracy theory because it actually is one, manipulated by vested interests and ideologies, not based on patients reality or the physical evidence available .
What then can you do?
Most people compromise away the truth. To me this is unacceptable. I cannot compromise away the truth of my tormented reality. I have to speak up and fight my corner. We have to speak up together and fight our corner. Anyone can uncover the truth if they look for it. It will be revealed if you open your eyes. It will be heard if you open your ears . It will be spoken if you open up your mouth.
This then is what I hope for. That we will all rise up with the Truth, not accept the current negation and the compromises that in effect destroys us and wastes lives. Hope burns deep in me for there is little choice left. Hope or despair. Life or death. I chose life. I chose hope. I chose Truth. Who will join me?