The invisible disease – Alina Savu shares her story of Myasthenia Gravis

Alina Savu talks about living with Myasthenia Gravis, and the way in which a book, read apparently by chance, has recomposed her life, page by page.

This article originally appeared in the Romanian language in Avantaje  Magasine, in 2016.

Alina Savu

Alina Savu

In September 2014 I was in my backyard and I could barely move or breathe. It was after a 2-3 months period of a terrible car accident I had, in which I have broken my arm and consequently had a metal rod with 12 screws.

I could not move or use my right hand! All these were added to the fact that I had been diagnosed with Myasthenia Gravis (a rare autoimmune disease) for 8 years and I have been feeling extremely unwell, although I had been taking cortisol for some time in large doses.

There, in my very own backyard, looking at all the material achievements I was surrounded by (which did not however give me any satisfaction) I felt I got not much time to live! I had this strange feeling that unless I make a major change in my life, by Christmas I would be dead!

For years, I wasn’t recognizing myself, I wasn’t myself, I couldn’t accept myself.

I wanted to change my life for 3-4 years, but I had neither the courage, nor the power to do it. By chance or maybe not, the next day I received an email from my uncle containing the book: “Tell me where it hurts” by Michael Odoul. And I was hurting so much: my hand hurt, my legs hurt, my joints hurt, my shoulder hurt, but it was my soul that was hurting most of all. I read that “our diseases are not the consequence of chance or destiny, but a message from our inner self” as Michael Odoul puts it.

I have already known that there is a close connection between the body and the mind, that the pain of the body is closely related to the wound of the soul and there is a closer relationship between the physical manifestations, symptoms, diseases and accidents and what is happening to us and inside us.

It was exactly what was happening with me and my life at that very moment: tension, the difficulty to take action, the desire to act in order to control my own life. For some years, I did not even recognize myself, I wasn’t myself, I did not accept myself as I was, it seemed to me that I was becoming more ugly, older and sicker, as I was fighting that “world” which did not understand me, my disease or the critical situation I was in; I did not feel neither loved nor able to love myself. It was only then that I understood that I was to blame for all the bad things happening to me and that it was up to me to make big changes in my life.

 

What did I do?

First of all, I had to recover physically. I began to take vitamins (C, A, E, D3), I started to drink every day the juice from a lemon, to have a diet rich in vitamins by choosing to eat more fruits and vegetables. And slowly, I noticed that I was feeling better and better and I reduced the cortisol dose until I eliminated it completely.

In the meantime, I had the opportunity to participate in a personal development course with Dr. Menis Yousry, course which changed my life. At the beginning, I did not believe that such a personal development course could bring someone real benefits, but participating in the Essence course I realized how angry I was with myself, for the last years.

After a moment when Dr. Menis Yousry asked us to think about ourselves and our childhood in silence, I burst out crying and said to myself “Alina, I forgive you”. I forgave myself and moved on.

I was in an ongoing battle with myself and couldn’t realize what I really want in my life. I started to recover somehow physically, I have been feeling better and better and I had no longer those continuous symptoms characteristics to Myasthenia Gravis. Consequently, I started to gain trust and hope that I can save myself! I was valuing myself more, giving myself more time; I was more interested in the way I was styling.

I was already saying, without any shame, that I have a chronic disease, as I had already accepted it.

And now, at the end of 2016, I smile and laugh more and more, I enjoy a more active life, I meet more often with my friends, and I go to the theatre (I haven’t been for 9 years because of lack of time). Helping myself, I received the power to help others as well, by involving myself constantly in various volunteer campaigns and activities. And being a volunteer gives me an enormous moral satisfaction!

 

Alina’s list

It is very important to manage your disease in such a way that your life should be normal and happy.

Stress has an important role in most of diseases, especially in the autoimmune ones.

In the case of persons suffering from various autoimmune diseases, the immune system produces antibodies which attack the person’s own healthy tissues, causing enormous pain and suffering.

There are more than 80 types of autoimmune diseases classified according to the different parts of the body which are affected.

It has been proved scientifically that the top causes of autoimmune diseases are stress, anxiety and depression. Numerous published studies have shown that stress and negative emotions contribute to all the autoimmune diseases, whether we talk about Lupus, Crohn disease, Hashimoto thyroiditis or Myasthenia Gravis.

It is obvious that the immune system is closely linked to the brain and the nervous system, but also to the white cells in the blood which are responsible for various physiological but also psychological needs. American scientists have even suggested the leukocytes behave like “parts of the brain spread in the whole body”.

The most important part of the body is the brain! The brain is like a KING of our body. This is the reason why the placebo or nocebo effect (a positive or a negative attitude of the brain) can impose such a powerful effect on the body’s physiology and health.

Members of the Romanian Myasthenia Gravis Association are Together Under the Umbrella to raise awareness of neurological disorders!

Members of the Romanian Myasthenia Gravis Association are Together Under the Umbrella to raise awareness of neurological disorders!

 

Myasthenia Gravis

Myasthenia Gravis is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups

The characteristic of this disease is the progressive weakening of the voluntary muscles. The weakening is getting worse with the repetition of the movements and improves when resting.

They call us “snowflakes” because people suffering from Myasthenia Gravis look alike, but there aren’t two persons with the same symptoms. The weakening of the muscles can be extremely varied, one moment an ill person can be active, whereas in a few moments it can fall to the ground like a rag doll.

The symptoms of Myasthenia Gravis can be double visiondrooping eyelids, trouble talking or speaking nasally; a rigid-inexpressive face, with a grimace; the difficulty to chew and swallow solid and liquid food; difficulty in walking, climbing up stairs, standing up the chair, sudden falling downs; difficulty in holding up the head (the thinker’s position), myasthenic crisis, the impossibility to swallow and breathe, the suffering person being assisted with mechanical ventilation.

For more information please visit the Myasthenia Gravis Association homepage – www.miastenie.ro


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