The agony of living with Very Severe Me

Here is my list :

1 The agony of knowing that I have not had proper , full, intelligent medical investigation of my disease or even proper medical recognition and explanation of what is going wrong with my body after 2 decades of being massively physically and cognitively disabled and very severely ill.

2 The agony of the denial that exists in the medical profession and its wrongful collusion with psychiatry which harms every body tainted with the diagnosis of ME .

3 The agony of denial of responsibility by the government for its fatigue policies which harm people with ME and its continued misuse of the term CFS as equivalent to ME.

4 The agony of having to trust people who do not ultimately have a clue how very ill and frail I am , who can harm me and damage me and not take responsibility for it, hiding behind wrong assumptions, misinterpretation, and personal ignorance or arrogance , ego and self- justification.

5 The agony of knowing that I have been abused by systems and people within them both through ignorance, deliberate ignorance and purposefully, with no power to redress or gain acknowledgement of that abuse.

6 The agony of injustice of no adequate health care for people like me who suffer for decades on end without proper or adequate medical support or knowledge or easy access to genuinely knowledgeable medical consultants aware if the system dysfunction in ME.

7 The agony of not having enough money to pay for the tests, treatments, aids and environmental supports I need to try and protect myself from deterioration.

8 The agony of misinterpretation of my illness by virtually everyone in society.

9 The agony of misinformation presented to the government, the media, society, by the psychiatric lobby and their unquestioning acceptance of it.

10 The agony of knowing that millions of pounds have been thrown away on misguided psychiatric therapeutic interventions and research that harm people with genuine ME.

11 The agony of misrepresentation of psychiatric fatigue as ME.

12 The agony of knowing that there are very few specialists for people with ME who genuinely know how to medically help people with ME.

13 The agony of knowing that the new wave of doctors are focussing on fatigue illnesses and there will be fewer doctors understanding and investigating the symptoms of genuine ME as a neurological disease.

14 The agony of experiencing first hand the denial by the neurologists who should be investigating and researching ME, but side, instead with the psychiatric myth and abuse patients by neglect.

15 The agony of not knowing who to turn to, who to help me, not knowing who is safe to turn that they will not further harm me by lack of knowledge or misunderstanding.

16 The agony of knowing that I have been damaged physically time and again by people who think they know what they are doing and have not understand my illness, traumatising me and deteriorating my health further without redress.

17 The agony of torment I experience from every single normal thing .

18 The agony of living in an ordinary environment that has become utterly hostile and damaging to me inadvertently , which is daily ,moment by moment, harming me just be my existing in it.

19 The agony of knowing that if I were a dog I would have been put down decades ago because of intolerable suffering.

20 The agony of almost two  decades of my life stolen from me by a damaging profoundly disabling physical illness that is being wrongly treated by the medical profession in the UK.

21 The agony of seeing friends I have come into contact with down the many years of illness, deteriorate and die in agony and untimely fashion.

22 The agony of knowing I have brought my loyal, loving, husband into a world of constant agony, despair , denial and institutional abuse that impacts his life daily as well as mine.

23 The agony of knowing that we are poor because I am ill and need my husbands love care and support to survive, so he cannot earn a living for us and I cannot earn a living in this dreadful state.

24 The agony of living with someone I love yet whom I cannot bear to touch me or speak to me or share what he is interested or learning or concerned about with me, because it will hurt me and deteriorate me to try and engage with him.

25 The agony of being in sheer physical constant pain and so damaged by complex symptoms that every single form of communication is broken between me and the world.

26 The agony of knowing that inside I am bright, intelligent, knowledgeable, fun, compassionate, interested, but that this is hidden and blocked by a wall of physical pain, nightmare paralysis and numbness, severe cognitive impairment, massive environmental hypersensitivity and an inability to connect and communicate and especially receive incoming communication from any source.

27 The agony of knowing I am being stopped from being who I am by profound physical torment and suffering beyond description but mostly by medical neglect and political power games.

28 The agony of knowing that I don't know how to bear it and there is no one who can help me or offer me solutions that stop the pain especially from noise that harms me so completely.

29 The agony of living in total isolation.

30 The agony of having no safe place in my home that is not violated by noise and other peoples lives and impact, so I have no safe space to cope with the profound torment that I experience.