My heart still bits!

My heart still bits!

              My name is Ivana. I suffer from a rare neuromuscular and partly genetic metabolic disease called hypokalemic periodic paralysis with mitonic myopathy. Alth­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­ough I carry that sickness from childhood I felt some mild and unspecific symptom early in childhood, but  first major symptoms I felt a few years ago in the form of fatigue, loss of strength, arrhythmias, fluctuations in pressure, vertigo, spasms, cramps, and even fainting. From day to day symptoms have progressed, so very soon there was no single day when I didn´t get something of this disturbing symptoms...

I was slowly losing the voice. I found it hard to get dressed, my strength in muscles was weakening from day to day and heart arrhythmias got worst and worst ... As it usually happens when a rare disease is in question years and years of not knowing my diagnosis was waiting in front of me, wrong diagnostic and even convincing doctors that I am indeed ill was part of my daily routine. I knocked on many doors, and I was getting only partial diagnosis,  ignorance or I came even to doctors that was trying to turn my symptoms on the psychosomatic illness. New hard tests, new doctors, new Clinics and always repeating the same story to totally confused doctors product in me new sense of fear and isolation ... It was a difficult 5 years of my life that are in some aspect repeating today too. All my life was subordinated to arrive to a diagnosis, try to alleviate the symptoms and seeking for help... My life stopped!

There was no more place for my hobbies, friends  that I have gained for years, career, love ... Going to the store or buying clothes and going to the movies or a drink with friends were rarities ... Even basic needs such as eating and walking became for me the problem and the challenge ... At that time, I passed a lot of misunderstanding of surrounding and friends, rude and insolent doctor, job loss, numerous visits to the emergency room, and feeling of absolute absurdity of life and my own failure ... It was a time of loneliness and pain, disappointment and sadness and in which despite of attempts by the few good people I was alone and helpless ... I only know what's in those moments was happened in my heart and in my soul, it probably never nobody could take it with me ... When I finally got this diagnosis, I could finally relax, pick up the pieces of my live and start again ... But even that I thought that it cannot be worse it got worst ... My life was gone. My job disappeared, hobbies that I had before I could no longer make, or I was not allowed to make, most friends has simply disappeared from my life, and those who remained were too busy with their own lives, the family was socked and tired from so long searching and now accepting my diagnosis, doctors were helpless, prognosis unknown, the rules have changed, and new priorities needed to be build up... And my life has now taken on a new dimension. I should have to deal with things I never thought I will need to deal before.

It was necessary to look for alternative methods of treatment as a cure for my condition does not exist, it was necessary to avoid any triggers that could cause attack of my illness, I had to adjust my diet, exercise, and had to look for a job that was now fitted by my disability, I needed to seek for help from our poor country, for what I was too proud, I needed to try to rebuild a life that was so disturbed that I did not know from where to start ... And then came the depression, helplessness, loneliness and fear .... and I must say that from all periods of my life this was worst ... This was hardest fight in my life.  Questions why me, why me, why this and this friend is not there anymore, why no one asks me how I am, where are all gone, why nobody cares neither state nor society, where is the point of all this?????

Darkness and the shadow of losing my own personality and feelings of helplessness was eating me and took me further and further away from reality ...  I felt so lonely and isolated, not understood and hopeless..I gave up from my life and from future...But there was people that still believed in me and believed in my healing as well as this unknown being that I call "God".  I think my biggest win till now, was that moment when I woke up one morning, looked at the sun from my window and said enough is enough, this is the first day of my new life!I will not give up I will fight. And after 4 years I finally again breathe fresh air into my lungs and started to live again ...Now the future is looking much better!New doctor, new eating habbits, new training, new aims, new adventure...