“Do you like horror movies?”: How do I live with multiple sclerosis
WRECKING "SCATTERED SCLEROSIS" IS KNOWN TO ALL,but few know what the disease really is. Often, it is mentioned as a joke in connection with forgetfulness or absent-mindedness and is generally considered something like senile dementia - although in reality it is an incurable disease that occurs in young and even childhood. In Russia, multiple sclerosis occurs in about 40-60 people out of one hundred thousand. The exact cause of the disease has not yet been established, and its mechanism is associated with a violation of the transmission of impulses along the nerve fibers. In this case, so-called foci of sclerosis (scar tissue) appear in the brain, scattered randomly, hence the name of the disease. The disease manifests itself in different ways: visual impairment, problems with the bladder, numbness and tingling of the limbs, gait disturbances.
A typical course of MS is exacerbations that occur every few months or years, and periods of remission. After each exacerbation, the body is not fully restored, and after 20-25 years, many people have a disease that leads to disability: a person may lose the ability to walk and finds himself in a wheelchair, sometimes he cannot speak, write or read, becomes completely dependent on help. Life expectancy with continuous treatment is not greatly reduced, but its quality can be seriously affected: multiple sclerosis is often accompanied by depression. It is impossible to cure multiple sclerosis today, although there are drugs that help prolong remission. Irina N. from Novosibirsk talks about how she lives with multiple sclerosis, what is the treatment and how the disease affects her life.
I am forty years old, but the first manifestations of the disease appeared at eighteen - although I understood this much later. Coordination violations were attributed to some incomprehensible things - I was recommended massage, injections, they said that I was just overtired. In 2005 I was temporarily blinded by one eye, but even then the diagnosis was not determined. Only in 2010, when my right leg simply refused, did I finally go to a neurologist. It turned out that the loss of vision and the inability to move the leg were exacerbations of multiple sclerosis. Now I normally see and can walk, although the latter is hard for me.
Unfortunately, the system is designed in such a way that the general practitioner should refer to a neurologist, and those therapists to whom I got simply did not think about multiple sclerosis could not suspect him. Older doctors of the “old school” work more often in ordinary polyclinics - even now, when I get to see one of them, they are surprised and say that I cannot have multiple sclerosis, because I am “so young.” Once a young doctor appeared in the clinic, who did not hesitate to say directly that he didn’t know what happened to me. Although it was clear that the problem was not in the joints, he suggested that, just in case, I go to a rheumatologist at a private clinic - and he immediately sent me to a neurologist.
For seven years, I know what's going on. Multiple sclerosis is a diagnosis that will always be with me. Although my doctor says that the disease is progressing slowly, I notice that I began to feel much worse. I used to love walking very much, but now it’s hard for me: I’m walking uncertainly, staggering and already after three hundred meters on the asphalt I’m not strong enough - and some paths in the park can easily bring me to tears. I work in an advertising agency, with printing, and I have very good color vision - it was such that I could not easily distinguish white from twenty lay-out white sheets. When I first became blind in one eye, I was very scared. And I realized that I need to look at this world as much as possible, soak up its beauty, while I have the opportunity. Probably in a few years I will sit in a wheelchair - which means I have to walk while I can still.
I notice that I began to feel much worse. I used to love walking very much, but now it’s hard for me: I’ve been unsure, I’m unsteady, and after three hundred meters on asphalt I’m not exhausted
Injecting drugs, which I treat, are used continuously, without interruption. At first it was a medicine that was administered intramuscularly once a week. I remember how I flew to St. Petersburg for several weeks and carried three syringes with the drug with me. This is the whole story, starting with the need for a cooler bag, and ending with a lot of sidelong glances and questions at the airport. Of course, I had a certificate from a doctor explaining what it was and why it was needed. Now the injections are daily, and I have no idea how, for example, to go somewhere on vacation for a couple of weeks. Despite all this, I still fear needles. In addition, the current injections are very uncomfortable, they need to be done subcutaneously in the back of the shoulder, in the triceps area - and with one free hand it is simply impossible to clamp the skin fold and prick. Injections are made by my wife, who calms every time. She is very supportive of me. In general, the course of multiple sclerosis directly depends on the emotional background, and, by and large, I simply cannot get upset, sad, cry; it can become worse.
The diagnosis is given to me for the rest of my life, and the treatment will also continue until the end - and yet the recipe is valid for a month, and in order to get it, you need to spend two full days. I'm not talking about the hassle at the clinic, the time in the queues - we have a great neurologist, but she cannot fully examine the patient and fill out all the pieces of paper in twelve minutes, which are officially assigned to this. A year and a half ago, they promised us that it would be possible to receive a prescription at least once every three months - but things are still there. At work, this is also reflected: not only do I regularly on sick leave, I also spend two days a month on getting medications.
I had depression three times, fortunately, not very hard - the doctors pulled me out without medication. For the first time, the doctor strictly said how to be treated and with what regularity to come in - but most importantly, she forbade me to read about the disease on the Internet and to draw any independent conclusions. That helped. The second time I came to a young neurologist, who suddenly said: "Irina, you always had such a beautiful manicure, what happened?" - I looked at my neglected nails and realized that it was no longer possible, it cheered me up. The third time, I was prescribed antidepressants, but I did not want to take them and asked for psychotherapy. The doctor formulated my attitude to the disease as watching a horror movie. “Do you like horror movies?” He asked, and I said no. “But you’ve thought up a horror movie for yourself, look at it endlessly and believe in it.” I realized that he was right and did not need to invent anything and be afraid of the future.
No matter how paradoxical it may sound, but thanks to my illness, I developed a taste for life. It happens that the mood is at zero, I want to give up - but my wife takes my hand and says: “Let's go”
We parted with the first wife - she was tired with me, because the disease seriously changes the character. I used to be some kind of more spontaneous, but now everything needs to be planned. There are many restrictions: I can’t just go for a walk or buy alcohol, which I won’t be sure of. I am banned from the beaches - in general, not every partner will survive. With Anyone we have been together for two and a half years, everything is very calm here. She supports me, pulls me out all the time for some events, makes me feel sorry for myself. We often go to theaters, to exhibitions, just to beautiful places. It was such that they suddenly packed up and went to the Ob Sea to collect sea buckthorn - we do not eat it, but the experience itself was very cool. No matter how paradoxical it may sound, but thanks to my illness, I developed a taste for life. It happens that the mood is at zero, I want to give up - but my wife takes my hand and says: "Let's go." I go and see that I have something to continue the treatment for, and life is not so long to waste time on sadness.
The disease has affected relationships with people: I no longer have contact with those who only take energy. In multiple sclerosis, support from other patients is important, and often people with this diagnosis tend to communicate with each other. It helps to answer some everyday questions and, fortunately, most people with MS are optimists. True, there are those who constantly regret themselves and seek pity from others, but with them I try to keep communication to a minimum.
There are uncomfortable situations when a grandmother in transport begins to resent that I am so young and do not give up the place. Or, for example, the director at work, even knowing about the diagnosis, could not understand in any way that I really walk very slowly and I do not need to be sent to any activities related to hiking. I think this is due to a lack of basic knowledge and a lack of observation. My second director has an aunt with MS for many years - and even for a long time he did not take this disease as something serious. When a person has cancer, everyone, firstly, understands that this is something terrible, and secondly, it is usually very noticeable outwardly: a person receives chemotherapy, which is poorly tolerated, undergoes serious operations. In multiple sclerosis, there are no such external manifestations or they are not always clear - well, there is a person with a wand, and who knows why. There is not enough knowledge, not enough sympathy, people do not understand why in the middle of the day I have already exhausted all physical strength, do not take the diagnosis seriously.
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