Below is an English translation of her last email (original Spanish version is here):
Aimed at all and in particular who is responsible for reading this:
I, Silvia González Rodríguez in full mental faculties and lucidity (which is to my misfortune, since suffering would be much less if I lacked them) decide to seek my freedom, to put it in a subtle way. This is the way I choose to find and fight it against this most heinous, painful, crueler than can ever imagined. Unfortunately many have had to perform this act so terrible, terrifying and destitute to finally find a Rest to the agony and suffering that is the nature of this disease … (but at a cost, price of suffering without equal).
After being in the midst of life suffering, enduring the unimaginable, no one (yes, nobody and I say it with all the conviction, because I am perceived, never recognized as sick by healthy people), to fight to survive, and not to live … Enough of suffering without equal at all levels, cruel, visceral pain !! ..
Among the miles of symptoms of these diseases, injuries … my hyperacusis[sound sensitivity] is very painful. This is what has taken me to the limit of the limits, the power of the self I nothing, since I am always subject to noises (machinery, exterior noises, from the building, even the wind — makes me ooze the pains of pain).
(See for another example the case of the son of one of the most important geneticists in the world, Ron Davis, with whom I feel unique and totally identified in it, except that I am not isolated from the noises etc … I do not know anyone — “More than the an academic study with me and my son Davis, with these diseases”)
In the specific case of sfc / severe sever, severe severe (not leaving aside my other diseases or injuries and their miles of symptoms, unable to put them all:
- lumbar disc hernia,
- osteopathy of pubis,
- contractions throughout the body,
- severe fibromyalgia,
- chronic fatigue syndrome / myalgic encephalomyelitis,
- multiple grade 3/4 chemical sensitivity,
- borrelia or lyme infection,
- irritable bowel syndrome,
- shattered microbiota,
- nervous system,
- immune etc. destroyed,
- metal poisoning anemia,
- Chronic hyperacusis,
- severe migraine,
- endometriosis very painful,
- endometriosis polipo,
- chronic nausea,
- and a long list of other.
The problem is serious, very serious because we (CFS/ME patients) are doomed for life, to be chained, isolated from the world, without resources and without anyone moving a finger for us (the health system, etc.). Then there is another component, we do not have the strength to fight nor our basic minimum rights, or manifest ourselves, there is no voice, people know nothing of the millions of people in the world that we are like us confined, without knowing about our existence and hell …
I will not go into details of what is happening, those who know my history, family, friends, acquaintances and perfect strangers are left without words. I never imagine that behind Silvia that I imaged I had so little time, (always wearing “makeup”, my reality has so deceive my mind. I know that it is was so terrible — how to continue to endure and enduring) all this suffering that I will not relate …
For 6 months I think not hay Not a single person already believer of the sea of pain, not believer, of diverse cultures, religions, ideologies etc (and there have been hundreds with which he spoke) that do not receive so that finally rests of this horror …
During almost all the years that it has been INVISIBLE in the face of the system in general, and in particular with regard to the health system … (nor am I even a number, since I can not risk going to a hospital for many reasons.. When I have gone, no treatment did any anything for me, nor to make me sleep, nor to relieve my pain nor …. I only come more sore, shattered, with my hyperacusis[sound sensitivity] becoming very painful to almost bursting … .),
I would also like to remain INVISIBLE for this … out of respect for me and my parents who are the ones who live here with me …
Since nothing can be done for me, nor do I see that the health system or whoever the competition does anything for it … since nothing makes me sleep it is crazy and I cries out to heaven!
My personal comment
I have had CFS/ME three times. I have been lucky with misdiagnosis from one physician but appropriate treatment, a physician willing to take risks from the latest studies presented at CFS conferences (Dave Berg – hypercoagulation, Cecile Jadin – occult infections) and a physician willing to cooperate. To me, I really know “That there but by the grace of God, I could be me writing the above!”.
In my immediate family, I live with a person with mild hyperacusis — I cannot eat in the same room, I cannot type on a laptop in the same room; significant multiple chemical sensitivity — infrared sauna, shower with soap, vinegar and alcohol whenever I come home, clothes must be ozonated and wash multiple times. The family has been blessed because we had the means to have a small home[892 sq ft, 83 sq m] custom built for multiple chemical sensitivity on 25 rural acres for hyperacusis. That is far from the reality of most CFS/ME victims.
I have seen the progress in my wife from mild IBS, to a CFS diagnosis (and remission) and eventual progression to atypical Crohn’s disease. With specialized probiotics from around the world, she is stable without any prescription medicine — and hopeful for reversal.
My academic training is in statistics and modelling. I have read just about every article on CFS that existed when I had my last two relapses — looking for a model that better fit all of the complexities seen in the studies. Overwhelming complexities. The model that was the best fit is simple to explain but a challenge to treat (because we do not have appropriate tools to use). The model is a stable shift of the microbiome (gut bacteria) that results in the body getting a very different mixture of chemicals (vitamins, amino acids, minerals) being provided to it. Too much of some, too little of many. Variation in DNA results in different responses(symptoms) to these changes. Because your microbiome is unique to you, the shift is unique (but appears to be similar across many autoimmune diseases).
Treatment or correcting this shift is the challenge! Using antibiotics is often equivalent to using a shotgun to kill a fly in the kitchen. Populating with good bacteria is a severe challenge…. most probiotics do not take up residence (“here today, gone tomorrow”). Most of the families are not available as probiotics. When they are available, government regulations and manufacturers can make it very difficult to obtain. In the US you cannot get any E.Coli probiotics through normal channels (I have to travel to Canada to get them). In Canada, UK, France, Spain etc you cannot buy Lactobacillus Fermentus ME. If you are lucky, you can get friends or family to ship them to you and hope customs let them slip through. The costs of probiotics are not covered by medical plans and often the shipping cost can reach $50. How can a person on disability due to CFS/ME afford it?
A hundred years ago, there were sanatoriums for tuberculosis; we urgently need sanatoriums for CFS/ME. Appropriate levels of quietness, chemical free environment, dentistry to remove mercury, appropriate food, appropriate probiotics and appropriate herbs and spices. Home treatment with 10 minute office visits have failed. When a person is too tired to prepare food, and too poor to afford the essentials, too cognitively impaired to remember to take pills, the person is made helpless against this disease.
It you have Amazon Prime (free Video), you may wish to watch “I remember me“