She is 23 years old and has multiple sclerosis. “There are days when I wake up and immediately feel terribly tired”

Maria was 13 years old at the time of diagnosis. As she admits, she did not know exactly what was happening to her and how the disease would affect her life. She found out about it during the strongest throw, when her legs, arms, intimate areas and cognitive abilities were attacked. – There was a massacre. I felt terrible – he recalls. In a letter sent to MedTvoiLokony, she shared her story of what it is like to live with multiple sclerosis.

1. Multiple sclerosis is a chronic disease of the central nervous system that damages nerve tissue in many areas of the body
2. Living with MS is full of challenges as Maria found out. She heard the diagnosis as a teenager, and the greatest bouts of the disease occurred during her studies
3. – I have to undergo rehabilitation three times a week, attend psychotherapy and take antidepressants. It is not easy to reconcile all of this with life, study, and interpersonal relationships
4. On May 30, we celebrate the World Multiple Sclerosis (MS) Day, which aims to raise public awareness of the disease
5. More information can be found on the Onet homepage

The letter was prepared by Paulina Wójtowicz

It started with a cold

It was 2012, I was 13 at the time. After having a common cold, a scotoma suddenly appeared in the field of view of my right eye. Later, his visual acuity began to deteriorate. My parents took me to an ophthalmologist, who immediately said that the eye looks healthy, and such problems could be retrobulbar optic neuritis and you should go to the emergency department.

We did so too. For a week I was in the ophthalmology ward, where I was given appropriate medications and had the first magnetic resonance imaging of the head in my life. It showed demyelinating changes characteristic of multiple sclerosis. The diagnosis was real because my grandmother also suffers from the disease.

After that week in ophthalmology, I was sent home with the recommendation of a neurological consultation and a repeat MRI in the future. It didn’t take long – two months later the story repeated itself, this time without a cold – I just started to lose my eyesight again, in the same eye.

At that time, I was admitted to the children’s neurological ward, where I was given appropriate medications, repeated MRI, and performed additional tests, such as a lumbar puncture. Everything pointed to MS, but the diagnosis was still not made – I was directed further to the Warsaw Children’s Memorial Health Institute, where I was tested again and the diagnosis was still not finally made.

We were advised to come for another examination after another three months. This also happened and the MRI revealed new demyelinating changes. Then the diagnosis was made – multiple sclerosis. The period between the first relapse and the diagnosis was six months in total.

The rest of the article is available under the video.

«I didn’t quite know what was going on»

I was 13 years old at the time, I did not know exactly what was happening and what was involved in such a diagnosis. I was a bit afraid because my grandmother was in a poor condition at the time, had a significant disability and needed constant care. Doctors explained to me that my grandmother had been ill for a long time, and she started to fall ill when there were no medications slowing down the progression of MS, which I started to implement immediately after the diagnosis. In general, I think that my parents were worried about my illness then, and I was a bit less worried about it.

For many years after my diagnosis, MS had little impact on my life. Of course, I had to take medication, for a while it was injection medication that I had to inject myself every other day, different every day, and still different once a week. After some of them, I felt unwell, suffered from side effects, but there was not much help for it.

Except that I functioned similarly to my peers, although for as long as I can remember I have had mental difficulties, severe anxiety and depression. I did not associate it with the disease, although today I know that in the light of today’s scientific knowledge, the co-occurrence of MS, anxiety disorders and depression is a very common phenomenon.

All this time, I think I was most acutely bothered by chronic fatigue, somewhat different from the “normal” fatigue that everyone experiences. It is much more severe, all-encompassing and does not go away despite sleeping or drinking coffee.

However, I finished primary school, middle school and high school. When I turned 18, the doctors suggested that I switch to a more effective drug and, finally, after years of stinging, in the form of tablets – I was very happy about it. Relapses appeared rarely, I was “mildly” ill, I was taking pills.

«I felt terrible during the throws»

I went to college during which, in my third year, MS began to attack seriously. From March 2021 to January 2022, I had five relapses. MS has attacked my legs, arms, intimate area, and cognitive abilities. There was a massacre. At each throw, I politely went to the hospital, I was given the appropriate drugs (steroids), the attacks were withdrawn, but not completely, they left behind damage.

I gained a lot of weight by taking large doses of glucocorticosteroids so often. I was changed to a drug from the “second line”, which is highly effective. I felt terrible during the relapses, I was experiencing cognitive difficulties, I felt stupid, I forgot things, I felt dizzy, I had trouble walking. It influenced my study process quite significantly, although I am continuing my studies.

I move on my own and perform most of the activities on my own, although it takes me more time and sometimes I cannot cope – fortunately, I have people around me who support me and help me when necessary.

Living with MS is full of challenges

Today, the greatest difficulty for me is tiredness and fatigue. There are days when I wake up and immediately feel terribly tired, even though I have politely slept eight or nine hours. I also often get tired after a short, ordinary effort – after shopping, after traveling to the university.

Another difficulty is that I have to undergo rehabilitation three times a week, go to psychotherapy and take antidepressants. It is not easy to reconcile all of this with life, study, and interpersonal relationships. It is also difficult that at every step I have to deal with whether I can handle it – will I be able to climb the stairs here, will I be able to do something else after a few hours of classes, or will I have the strength to do what I would like to do.

Another extremely important, although in my opinion underestimated by doctors, The difficulty is depression, which started in my childhood, but in the last year, when I had relapses all the time and my study process was questioned, I developed an episode of depression that was so severe that I had never imagined. It was only after a few months of living with such a strong depression that I found myself under the care of my current psychiatrist, who selected the appropriate treatment for me. I am also under the care of a psychotherapist all the time.

Orthopedic problems that appear as a result of the weakening of muscle strength by MS are also a huge barrier. I don’t count how many times I had my ankles twisted in the last year. In addition, there is spasticity, muscle aches, stiffness and clumsiness, which mainly bothers me when it comes to the hands. It is difficult to perform precise tasks such as painting your nails or handwriting.

The costs of treating and treating MS are also a challenge. I leave a good PLN 200 at the pharmacy each month. Approximately PLN 600 is spent on psychotherapy, and rehabilitation is another PLN 900. I see a psychiatrist less than once a month, but on average, it can cost about PLN 100 per month. In total, for the purposes of the disease, it is 1,8 thousand. PLN per month.

I get PLN 215 in nursing allowance from the state, PLN 700 from the university – this is a scholarship for students with disabilities. There is a hole in the amount of over PLN 1000, which is fortunately covered by my dad. Living with MS is very expensive.

Hope in properly selected treatment

Physiotherapy and rehabilitation helped me a lot after these last five relapses. Although the damage remains, today, four months after the last cast, I feel much better. I am making progress, I am becoming more independent and stronger.

In October 2021, after three attacks (March, April, September 2021) and with many (I don’t know exactly how many, a dozen) new demyelinating changes in the magnetic resonance image, I was introduced to a new, innovative drug. It is only taken four times in weekly pill cycles. After that, for some time (counted in years), the remission effect should persist.

I am after the first two cycles, two more are waiting for me in the fall of 2022. In November and January I still had relapses, and now, at the end of May, I can probably shyly say – I’m in remission again! I am feeling better and better, despite the fact that my lunges have left me some damage. Due to the fact that I am now receiving drugs from the “second line”, with high efficacy, I look to the future with optimism.

We encourage you to listen to the latest episode of the RESET podcast. This time we devote it to ecology. How to be eco and not go crazy? How can we care for our planet on a daily basis? What and how to eat? You will hear about this and many other topics related to ecology in the new episode of our podcast.