THE WORD COMBINATION “MULTIPLE SCLEROSIS” IS KNOWN TO EVERYONE, but few people know what kind of disease it really is. It is often jokingly mentioned 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 at a young and even childhood age. In Russia, multiple sclerosis occurs in about 40-60 out of a hundred thousand people. The exact cause of the disease has not yet been established, and its mechanism is associated with impaired transmission of impulses along nerve fibers. In this case, the so-called foci of sclerosis (scar tissue), scattered chaotically, appear in the brain – hence the name of the disease. The disease manifests itself in different ways: visual impairment, problems with the bladder, numbness and tingling of the extremities, gait disturbances.
The typical course of MS is an exacerbation that occurs every few months or years, and periods of remission. After each exacerbation, the body does not fully recover, and after 20-25 years, the disease leads to disability in many people : a person may lose the ability to walk and end up in a wheelchair, sometimes cannot speak, write or read, and becomes completely dependent on outside help. Life expectancy with constant treatment is not greatly reduced, but its quality can be seriously affected: multiple sclerosis is often accompanied by depression. There is no cure for multiple sclerosis today, although there are drugs that help prolong remission. Irina N. from Novosibirsk talks about how she lives with multiple sclerosis, what the treatment is and how the disease affects her life.
I AM FORTY YEARS OLD, but the first manifestations of the disease appeared at the age of eighteen – although I realized this much later. Coordination disorders were attributed to some incomprehensible things – they recommended me a massage, injections, they said that I was just overworked. In 2005, I temporarily became blind in one eye, but even then the diagnosis was not determined. Only in 2010, when my right leg simply failed, I finally got to a neurologist. It turned out that both the loss of vision and the inability to move the leg were exacerbations of multiple sclerosis. Now I can see normally and can walk, although the latter is hard for me.
Unfortunately, the system is designed in such a way that a physician-therapist must refer to a neurologist, and those therapists whom I came to simply did not think about multiple sclerosis, could not suspect it. In ordinary clinics, older doctors of the “old school” work more often – 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 turned up at the clinic, who did not hesitate to say bluntly that he didn’t know what was wrong with me. Although it was clear that the problem was not in the joints, he suggested that I go to a rheumatologist in a private clinic just in case – and he immediately sent me to a neurologist.
I’ve known what’s going on for seven years. Multiple sclerosis is a diagnosis that will always be with me. Although my doctor says the disease is progressing slowly, I notice that I have begun to feel much worse. Previously, I loved to walk, but now it is difficult for me: I walk uncertainly, stagger and after three hundred meters on the asphalt I am left exhausted – 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 from twenty laid out white sheets I easily distinguished insufficient white. 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, absorb 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.
The injectables I use are used continuously, without interruption. At first it was a drug that was administered intramuscularly once a week. I remember flying to St. Petersburg for several weeks and carrying three syringes with the drug with me – this is a 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 doctor’s note explaining what it is and what it is for. 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 am still afraid of needles. In addition, the current injections are very inconvenient, they need to be done subcutaneously in the back of the shoulder, in the triceps area – and it is simply impossible to pinch the skin fold and prick with one free hand. The injections are given by my wife, who calms me down 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 just can’t get upset, sad, cry – it can get worse.
The diagnosis has been given to me for life, and the treatment will also continue until the end – and nevertheless, the prescription is valid for a month, and in order to receive it, you need to spend two full days. I’m not talking about the hassle in the clinic, the time in the queues – we have an excellent neurologist, but she cannot fully examine the patient and fill out all the paperwork in the twelve minutes that are officially allocated for this. A year and a half ago we were promised that it would be possible to receive a prescription at least once every three months – but things are still there. This is also reflected at work: not only am I regularly on sick leave, but I also spend two days a month on medication.
I had depression three times, fortunately, not very severe – the doctors pulled me out without medication. For the first time, the doctor strictly said how to be treated and how often to come – but most importantly, she forbade me to read about the disease on the Internet and 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 this is no longer possible, it cheered me up. The third time I was prescribed antidepressants, but I did not want to take them and turned to psychotherapy. The doctor formulated my attitude to the disease as watching a horror movie. “Do you like horror movies? He asked, and I replied in the negative. “But you invented a horror movie for yourself, watch it endlessly and believe in it.” I realized that he was right and there was no need to invent anything and be afraid of the future.
We parted with my first wife – she was tired with me, because the disease seriously changes character. Before, I was somehow more spontaneous, but now everything needs to be planned. There are a lot of restrictions: I can’t just take a detour on a walk or buy alcohol, the quality of which I am not sure of. I am banned from beaches – in general, not every partner can stand it. We have been together with Anyone for two and a half years, everything is very calm with us. She supports me, constantly pulls me out to some events, makes sure that I have no time to feel sorry for myself. We often go to theaters, exhibitions, just beautiful places. It was such that we suddenly gathered 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 the disease, I got 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: “Come on.” I walk and see that I have something to continue treatment for, and life is not so long to waste time on sadness.
The disease affected my relationships with people: I no longer contact those who only take energy. With multiple sclerosis, support from other patients is important, and often people with this diagnosis seek to communicate with each other. This helps answer some everyday questions and, fortunately, most people with MS are optimistic. True, there are those who constantly feel sorry for themselves and seek pity from others, but with them I try to keep communication to a minimum.
There are uncomfortable situations when some grandmother in transport begins to be indignant that I am sitting so young and do not give up a seat. 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 did not need to be sent to any activities related to walking. I think this is due to a lack of basic knowledge and lack of observation. My second director’s aunt has suffered from MS for many years – and even he did not take this disease as something serious for a long time. When a person has cancer, everyone, firstly, understands that this is something terrible, and secondly, it is usually very noticeable externally: a person receives chemotherapy, which is poorly tolerated, undergoes difficult operations. With multiple sclerosis, there are no such external manifestations or they are not always clear – well, there is a man with a stick, 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 exhausted all my physical strength, do not take the diagnosis seriously.