- What was your first contact with the disease like?
- And what happened next?
- What is it like to live with multiple sclerosis?
- What is your everyday life like now?
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Multiple sclerosis is a disease of the nervous system. It will be different for everyone. In Izabela's case, she caused a significant loss of sight and hearing. Today, Iza, together with her husband Jakub, proves that you can enjoy life in handfuls, and the stroller is not an obstacle in achieving your life goals. What is their life like with the disease? How do they define happiness and what are their plans for the future? They told about it in the next episode of the series "I live with …".
What was your first contact with the disease like?
I woke up with a pain in my eye. I had an appointment to record, but I still had a few minutes to do the interview, so I went to the ophthalmologist. The ophthalmologist immediately sent me to the hospital and it went downhill.
Unfortunately, I left the hospital with a diagnosis - multiple sclerosis. I could hardly see with my left eye, I had limited vision in my right eye. In addition, there was a significant hearing loss. These were times when there was no medication. The so-called drugs were just starting to come in. immunomodulating, i.e. affecting the progression of the disease, slowing the progression of the disease. The only thing I could offer were steroids, but my body has already rebelled against them.
And what happened next?
I came home to the four walls. From a person who was in the wars, in the Balkans and beyond, I have become a person who has problems leaving home, because he is blind that he can get under a car. Communication is the foundation of the journalistic profession, and I didn't understand what people were saying to me. I felt that I had reached the wall.
Only when I got under the car and the driver stopped shouting: "Where are you orphan eyes ?!" right question … I decided to go to the Polish Association of the Blind and undergo training in the so-called rehabilitation of vision. I started walking with a white cane. The white cane served not only me, but also the environment that had to take care of me.
What is it like to live with multiple sclerosis?
We are used to visible disabilities. Someone does not walk, limps, rides in a wheelchair, and what you cannot see is not taken into account. It cannot be seen, for example, that someone suffers from chronic fatigue. Chronic fatigue in MS is as if someone pulled the plug to the socket. These are also emotional problemscognitive decline, depression, personality disorders such as emotional lability.
And there are also people who, for example, suffer from MS for 10 years and in their life no one would say that they are sick with anything. We have a friend, a businesswoman, a beautiful woman, she runs a company and works normally. Now there are such good drugs, if someone has a well-chosen therapy, it is possible to significantly stop the development of the disease. Everyone gets sick differently. Everyone will suffer from the same disease differently. One has pain in his legs, another gets tired quickly, the third - as we talked about - has cognitive problems, and is physically perfectly fit and, for example, will never sit in a wheelchair. If someone takes care of himself, adjusts his abilities to his plans, then he can function well for a long, long time.
What is your everyday life like now?
Living with the disease is different for sure. We often laugh that it is like my mother-in-law - you don't necessarily like her, and you can't throw it away. However, if mummy is well-behaved, she sits in her corner, picks a crochet sweater and doesn't move. Each of us has a certain amount of energy and it is good to know our body enough to know when we have the most energy and when we have the least and then plan the day.
We run two foundations, we take care of animals, so we have something to do here. If the weather is right and Iza feels well, we go outside. We have an electric, all-terrain cart that helps us move. Iza's functioning depends on her well-being. Besides, he is already very tired at the moment, so he is very active about 3-4 hours a day.
For example, I am not able to meet or lead anything in the evening or in the afternoon and this is the knowledge that every sick person should recognize in himself. This is the knowledge he should learn. If I run out of energy now, I won't have it anymore later. But I already have energy consumption planned for each day. It is the self-awareness to learn to live with the disease.
If we perceive life through the prism of illness, my wife should lie down, because even from the pram she can fall and hurt herself. And nothing, God forbid, not to do anything, because I will get tired … And not to build greenhouses and grow tomatoes. The very fact that I wake up in the morning is beautiful.