The article has been automatically translated into English by Google Translate from Russian and has not been edited.

Personal experience: what it's like to be diagnosed with epilepsy

'29.03.2019'

Source: Rambler

Just think - more than 50 millions of people in the world suffer from epilepsy. This is comparable to the population of the whole of France and more of the population of Spain. Both adults and children suffer from epilepsy: some of the first seizures are visited in the first months of life, and some at an age when it seems that this will not happen to you for sure.

Фото: Depositphotos

Lyudmila Belyakova, a consultant to a perfume shop in St. Petersburg, told her story on the Day of Epilepsy Patients, writes Rambler.

Life has changed in 35

- I lived quietly until 35 years and thought I was a healthy person. But at one point, my life changed. A few days before the first attack, I was haunted by sleepiness. I wanted to sleep terribly, but I poured my favorite coffee and did not attach any importance to this. The attack happened when I was at home, in that I was lucky. I just went out to the hall for water and felt that I could not breathe ... The first thing that came to my mind was choking, but how? Saliva? I myself did not understand how I was on the floor; there was something hot on the face, in the mouth. As it turned out, this was blood: falling, I broke my face. My whole body was shaking, and I decided that I was dying. At the noise of her husband ran out - I can only imagine what he experienced when he saw me in this state. He called the ambulance, but while she was driving, the attack ended. And I realized that I could not speak and move my right hand. The medical assistant checked me for a stroke and honestly said that he didn’t know what I had, advised me to take a sedative and to do an MRI. What I did.

When I went on an MRI, I was absolutely sure that I was healthy. But the first thing I saw when they rolled me out of this machine was the pale face of my sister. It turns out that they found a tumor in me called a cavernoma. So I went to the neurosurgeons. I considered attacks as a side event: they began to happen one after another, after the third I had already ceased to be afraid of them. Nobody has yet spoken about epilepsy, I thought it was a temporary inconvenience and everything would pass after the operation.

I had one goal - to quickly go for an operation and return to my normal life. It seems everything was going well: after a day I got up, after five I was discharged with a recommendation to contact a neurologist-epileptologist to cancel the medications. When I came to the doctor, she was upset with me: they say, girl, you got it - you have epilepsy, and we are not talking about cancellation, but, on the contrary, you need to increase the dose and change the form of the medicine.

Morning without coffee, New year without champagne

Probably, I have an easy case, judging by the rest of people with epilepsy, whom I see while I am waiting for a doctor's appointment. Now I get around mini-seizures and only amid fatigue. This condition can be described as follows: Imagine that you are under water. In the clear water. You see objects, but you cannot understand at what distance they are located, it is also difficult to move, movements turn out to be somewhat slow. There are other types - banal twitching, in my case more often - hands.
Normal life? This is probably not about me yet. I cannot almost everything that I loved: the beach, the sun, traveling by plane, all active sports, and indeed any sport, alcohol (I, of course, not an alcoholic, but the first New Year was difficult without champagne), black tea, but the main thing is coffee ... I am a coffee lover with experience, and I was deprived of this drink. But man is a creature that gets used to everything over time. So I am learning to live a new life for myself, looking for new hobbies that can be combined with my illness.

Since I can’t almost everything that I enjoyed (from the old life, I sometimes allow myself to go to a concert, but not more than once every six months), I’m looking for new hobbies. And it should be without any physical exertion, which is strictly prohibited to me. So, first of all I remembered the old love of films - this is the best way to take time. I am the administrator of one of the VKontakte groups, with a head gone into this business, constantly looking for all the new and new information. To improve memory, learn English. Unfortunately, I can’t go to the courses, because I don’t think that I’m going to master the program - I can’t devote more 15-20 minutes to this, after which my head starts to ache, and my general condition worsens. So I have to find my techniques. One of my remaining old hobbies is knitting.

I was very lucky - my employer always supported me. While I was in the hospital, and then recovering, he kept my place. When I say that I do not feel very well, he always allows me to rest. My husband is with me from the first moment of his illness, he was at the first attack and always supports me. Some of my new features, such as clumsiness, poor memory, translate into positive moments. He says that I looked like a penguin - he knows how much I love these birds. It seems to me that I sometimes fall into childhood; I do not know, it is a disease or midlife crisis.

Back on the snowboard

If it were not for him and his sister, then I do not even know what would have happened to me. While I was going through all the steps from denial to acceptance, they found hospitals, doctors, and they agreed. Their support instilled in me and gives me the strength to fight the disease, because they gave me hope that someday I can recover. I know that epilepsy is rarely cured completely, more often it goes into remission. But they gave me a chance: there is a possibility that in five years I can be removed from this diagnosis - and this is now my goal. I live by it. Therefore, I fully comply with all the recommendations of the doctor. Without "you can." No, if not, then not.

I want my life back. I want to fly to the sea or to the mountains. I want to jump with a bungee or go for a ride on some extreme attraction. I just realized the dream of childhood - I learned to ride a snowboard! And just to go to the skating rink in the evening ... Most of all, I'm afraid of losing this goal.

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