About me
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...
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