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How I struggled with chronic fatigue syndrome

20 Dec 2016

From tips to give birth to the creation of new neural connections in the brain - how to cope with the disease, from which only 5% of cured patients

Depressiom, Meldonium, Mildronate, Semax, Afobazol

The name "chronic fatigue syndrome" is often misleading. CFS - the story is not about people who get tired quickly and often, though how it all begins. It is a state of complete exhaustion, when any movement is a man of enormous efforts. The disease can develop in different ways: some are experiencing severe headaches, others suffer because of cognitive difficulties and brain haziness, the third appears intolerant of certain colors and sounds.
Chronic fatigue syndrome have no risk. Among patients found both older people and children. However, it is believed that most CFS ill residents of large cities. Despite the fact that in Western countries recognized the disease as early as the middle of last century, Russia still does not believe in its existence. Meanwhile, the number of cases increases, and manages to recover only 5%. These results are explained by the fact that the disease is still poorly understood and generally accepted cure for it is not.

About how it all began

Some years I spent abroad: studied and worked first in Paris, then in New York and London. And two years ago, I have returned home and began to work in a think tank that advises the government. Frequent flights, stress, mental and physical stress led to the fact that in September 2015, after returning from Ibiza, I caught a cold and fell ill for two weeks with atypical for themselves weakness.

Syndrome of chronic fatigue

By the end of the month I was able to recover from a cold, but in October I began to notice that with me there is something strange. Forces of dwindled, and even in the morning I woke up tired. His eyes ached. At first, as any resident of the metropolis, I did not attach any importance to this and continued to try to live in a normal rhythm for himself. But day after day fatigue is becoming stronger. However, it was not like that which a person experiences after a long day. Rather, it seemed that I was put in the armor.

Other symptoms also becomes brighter: eye pain intensified, cognitive dysfunction appeared - sometimes I just can not understand what is written in the working papers. It seemed to me that it is necessary to relax and let it be.

On my complaints anybody especially did not react - friends and colleagues advised to drink only vitamins. But time passed and nothing helped me. At some point, a friend said that waking up tired, as though the night dragged stones on Kilimanjaro - is not that great, and I decided to go to the doctor.

About trying to diagnose

I always felt as if sick, so I decided that I have problems with immunity, and in the first place went to the immunologist. I made a few tests for immune status, and based on their results the doctor of a private clinic diagnosed me - "secondary immunodeficiency."
As treatment, she appointed me medicines, which, as I later learned, abroad have long recognized ineffective. But then I have not penetrated as it should to this topic and trusted doctor, and therefore cutting the full course.

From prescription medication does not become easier. In the New Year I went to Perm, where my parents live. There I got worse: all the holidays I just lay there, as could not sleep or walk. My mother asked why I was so tired, and I believed that if I shall sleep, everything goes. In desperation, I went to an appointment with a local neurologist. The doctor said I was perfectly healthy. And then he asked me if I had a man, and advised as soon as possible to give birth.

Back in Moscow, I went to the Federal Institute for Immunology. There I was again sent for tests and found the sixth type of herpes virus. By the way, it is a great many - either in the active form, or as passive. And its effect on fatigue is not fully studied. But then I had hoped to cure for herpes, and finally to death. I was prescribed Meldonium buy and antiviral drugs, from which it was neither hot nor cold. I remember, for all the work of a colleague laughed that Sharapova this medication helped, but I do not.

On the advice of the chief, I went to another immunologist at the same center. Female doctor appointed the new drugs, but the disease has progressed only. One day I woke up and swam around me and circled. This went on for a week or two longer remember the bad. In addition, I have always something to hurt: the head, the body, the eyes (they all wanted to get it and put it on the shelf). Get up out of bed in the morning was worth the hardest efforts. In the evening, I did not even stand the forces, so I washed, sitting on the basin. I began to torment insomnia: I either just could not get to sleep, or waking up constantly.

Another female immunologist suggested that I contracted parasites of irregular migrants in Ibiza, and gave common medical advice - to give birth. Then there was a neurologist, who advised me to move abroad. There was a paramedic who thought I was undermined health, swallowing psychotropic substances in Ibiza. There was a quack doctor of a private clinic, which is simply feeling the patient and make the diagnosis. I, for example, he said, that all my problems - because of the "non-reduced sleep stage", and suggested that antidepressants are abroad as a prohibited narcotic. I drink them, of course, I did not. I also tried to go to the optometrist complaining of pain in his eyes. They advised various drops, which, however, turned out to be useless.

About depression

Doctors were so many that I have all, and I do not remember. My ordeal lasted almost a year. During this time I have tried all kinds of medicines (from tablets against parasites to anti-virus anti-herpes infections) and collected the whole set of diseases that do not exist in the International Classification of Diseases: from vascular dystonia simply to fatigue. I also tried to go to psychotherapists to prevent masked depression.

In fact, I would have learned with pleasure that I have depression. So at least there was a treat. I had a couple of depressive episodes. But they passed quickly and soon became not cause but the consequence of my illness. After all, I actually lost my life with numerous travel, parties, surfing, lost many friends and relatives. In addition, it weighed on me that I could not plan anything and everything is constantly missed.

First the therapist after a couple of sessions has refused to work with me.
According to him, I was mentally normal any physically healthy person. The second therapist tried very hard to help me, but was unable to. So I just came to her to complain about the way I feel bad, and how awful to lose because of this that so love. Another thought that I grew up in a dysfunctional family, and so fascinated by the charity as a means of escape from the real problems. I have a wonderful family, and how this nonsense could be attributed to my well-being, still do not understand.

Sometimes I returned to immunologists and said that I did not help to prescription drugs. And they said something unintelligible or hinted that I had problems with the head, referring to the depression. When I say that psychotherapists refuse to work with me because of the fact that a mentally unhealthy person I have too much, and genuinely laugh, conversation ended.

About trying to activity

In the beginning, I thought that perhaps the reason for my fatigue became a bad physical shape. So I start walking on fitness twice a week. I only lasted for a month, because after class forces no choice at all. Then the doctor told me to do exercises in the morning. Once I tried and barely reached the subway, where the crying - it was so bad. After that I gave up sports until one of immunologists not imagine that I suffer because of problems with the vascular system. Then I went to the swimming pool - there are sessions given me incredibly hard. But I did not know what was happening to me, and was ready to try by all means, just to get back to normal.

Despite his illness, I continued to go to work. I was incredibly lucky with the director and colleagues who not only reacted to the situation with understanding and reduced my workload, but also helped in the search for doctors. Of course, when I was the weakest link in the team, but my partner always tried to help cheer. I am sure that, if not for my colleagues, I would have gone mad. Sometimes I thought of resignation, but just lie at home - not an option for me.

Previously, I led a very active life, which was not ready to give up. So the first time attended a Spanish course. Sometimes I went to recreational activities near your home or work. occupied homes were few, since due to the helplessness and pain in the eyes, I could only lie there and talk on the phone. Shout was especially not with someone, and to do something like, so after my work has become part of the entertainment ironing. Fortunately I have a lot of skirts.

On the relation of society

In our society we do not talk about diseases. If you do something wrong, there is a risk becoming an outcast. I do not know how to explain this phenomenon, but many face with him. Ill, I decided to go the other way and start to sound right and left that I need help. Because it was I really needed. But in response to receiving any comments on Dmitry Medvedev's style - "Well, you hold on! Health to you! "- Or empty promises. For example, I wrote: "Oh, Pauline, because you feel sorry! How did it happened? Be sure'll come on Saturday. " But neither on Saturday nor then about this man I did not hear.

It is not just about the little-known, but also close friends. It would be more understandable if they have ceased to communicate with me because of the constant whining. But I was not discouraged and did not complain. From friends I wanted to communicate and minimal assistance. Since I badly hurt my eyes, I asked for help in finding doctors and information about possible diseases of the Internet. Many agreed, but then, referring to employment and work, disappeared from my life. This happened quite often, and I'm still hard to live with it.

But there were also heroes who have supported me, looking for doctors around the world, introduced with the right people, passing my analyzes and the conclusion that I could make an atlas of illness and recovery. With some of them to the disease, I almost did not communicate. Most of all living abroad.

Yet, oddly enough, helped Tinder. In the days when my eyes hurt not so much, this application was a major time killer. During the year I talked with so many people - although with none of them, of course, are not met. About his health, I told only once for the sake of the experiment, more than the man I did not write. Actually, I think that Tinder came up for girls sick: and time you can spend, and feel normal.

About acquainted with other patients

In the summer I went to the reception to the immunologist one of the most popular private clinics.
By the time I had on hand was already a huge pack with the results of the various tests. Was late more than an hour, the doctor glanced at my papers and said that they are worthless, but because better to hand it all over again in the laboratory, which it trusts. At that moment I thought, "Fuck you all to hell with their analyzes and useless drugs!" Almost a year, I went through all the circles of hell the Russian state and private medicine, spent about half a million, but beyond knowing that this match is not only difficult, but also wildly expensive, I got nothing. So I decided myself to understand what's going on with me.

At the beginning of the disease, I tried to find an answer to the question, what it is with me, on the Internet. The most common result of the search for my symptoms had a disease called "chronic fatigue syndrome". In this disease there is no risk, and it is still poorly understood. While in the west have long recognized a serious problem in our CFS nobody believes. Accordingly, there are no doctors who could help. On the Internet, in addition to the advice to wear more red (he gives the power), I found many forums of patients with this very weariness.

Forums - depressing place, because basically sitting there are those who do not help. According to research, only 5% of patients with CFS can be cured. Many people spend their entire lives confined to bed, and someone even dares to commit suicide. I confess that sometimes I do think about it, but only as a last resort method - in case of disease transmission will be very difficult. The fact that patients with fatigue to live in complete uncertainty: no one knows how to treat you, and it is unclear how long your suffering. This means that you can not plan for the future, to start a relationship, change jobs. Awareness of this is killing.

As to the disease I for some time lived abroad and traveled a lot, I had a lot of contacts. Friends and acquaintances have helped me to contact the CFS patients from around the world. Those often painted the horrors awaiting me in the future: "What, you do not have problems with digestion? Wait, will start soon, "" Do not know what brain fog? Soon you learn. " Some eventually developed intolerance to certain sounds and colors. Others have raised the temperature, and they simply could not get out of bed. Recognizing it was hellish burden on the psyche.

On the search for a way

Realizing that if I do not take the disease into their own hands, no I will not save, I read almost everything that could be found on the Internet about chronic fatigue syndrome, and treatment plan.

The forums periodically information appeared that from the disease helps to something called the Lightning Process and The Gupta Programme. At first I thought it was for those who believe in esoteric and stuff. But realizing that traditional medicine can not help me, she decided to read about these programs. They were based on a study of neuroplasticity connections in the brain, and argued that the CFS and a number of other diseases occur due to malfunction of the brain, and if you get it back to normal, then everything goes.

Independent reviews have been difficult to find, but they all talked about the amazing healing. For example, one woman wrote that 22 years lain in bed, and after passing through the three-day training ran the London Marathon. Of course, I was skeptical, but after the panic attacks and depression, when it seemed that my soul sucked Dementors, I decided to trust non-traditional methods and enrolled in a Lightning Process training in London. It was my plan A.

Then I signed up to the doctor of the Institute in San Francisco, but the reception he had to wait for about six months. Like most American doctors, he explained the occurrence of CFS by the presence of viruses or parasites in the body and offered medical treatment. If it did not work, I would start to take the medicine called LDN (Low-dose naltrexone). In the US, it prescribed to patients with alcoholism, but one of my friend with CFS small doses of the drug helped to cope with the disease. But I did not want to start with LDN, because she was afraid to stuff themselves incomprehensible pills. I still had something to lose.

About training

I was interviewed and got to the training Lightning Process. The program not only helps with CFS, and in anxiety disorder, chronic pain, depression and other autoimmune diseases. Therefore, apart from me, in the group were people with various problems: woman with CFS from South Africa, 12-year-old boy with CFS in the UK, two women from New Zealand (in one has depression, and the second it supported) and the Briton, who lived Cyprus, with an anxiety disorder.

In the classroom we talked about the neuroplasticity of the brain and gave the instrument - about this can be described as a system of exercises - with which supposedly can convert it to a job. In fact, it is a mechanism to run again and create new neural connections. For three days my condition has not changed, while the girl, who for five years was afraid to leave the house due to an anxiety disorder, on the second day of the training, one went to the bar.

I returned to Moscow distressed, but, gathering the remnants of willpower in a fist, continued to apply the technique Lightning Process. I explained that often the higher the human intellect, the more difficult it lends itself to retrain the brain. Five days after my first return for a long time suddenly I felt relieved - it has given me an insight into what the instrument is. By the end of next week, I was able to recover up to 70%.

The first days I just could not believe his good fortune, and constantly crying. In the subway, on the bus, at work. The idea that this nightmare is finally over, did not fit in my head. However, I still sometimes cry with happiness.

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