My name is Graziano Isabella, I am Sicilian, for years I have lived in Brescia with my husband and son. I am 49 years old, for about two years I have been diagnosed with fibromyalgia .
Getting to this diagnosis was not easy: this disease includes a long series of symptoms and various problems.
My story begins in 2009 with the sudden appearance of knee algodystrophy . This disease is little known and with little chance of recovery, so the doctors advised me to leave the job immediately: I was cleaning and it was very heavy. Thus began a long series of visits and examinations in various hospitals, with heavy treatments.
Fortunately, I recovered from algodystrophy, but I later discovered that it was probably caused by a congenital malformation and by the wear and tear of both knees, this led me to three knee surgeries but that did not solve anything.
Doctors say that even prostheses might not work for me.
Meanwhile time passed and the pains also involved the feet, the legs, the bones of the hips, the back, shoulders, neck, hands. On the advice of doctors I also tried pain therapy. After a few months, however, I had come to morphine with the only result of being even worse: my body was intolerant and I had only side effects.
So I only went on with knee infiltrations and physical movement for the leg muscles. I was getting worse and constantly having pains all over my
body, severe headaches, gastrointestinal problems, insomnia, palpitations, tinnitus and nocturnal dizziness, profound fatigue, cognitive problems and much more …
Many years spent inside and outside hospitals and many surgeries one after the other.
The last two years I have worsened a lot and in fact after the umpteenth medical examination making the long list of my ailments the doctor has had a suspicion. Without telling me what he suspected he made me do a series of tests and once ready he sent me to visit the rheumatologist.
The rheumatologist after a careful visit confirmed my doctor’s suspicion: I have Fibromyalgia syndrome.
For me it was a severe blow. I knew I had some disease but I hoped it was something that could be cured, instead with this disease I will have to live with it forever.
I will have to live with the pains in all muscles that stiffen causing pain and even cramps. Especially at night the body becomes a stiff and painful piece of wood the slightest movement is painful. I don’t sleep, I don’t rest and I often feel dizzy.
In the morning I wake up already tired , without strength and it takes me a long time to do everything. It takes a lot of effort to start a simple day.
I put all my physical and moral effort into it but my body now decides for itself. S suddenly kills: I start to sweat, I tremble, I feel nauseated and I feel I am missing. The body is devoid of all strength and becomes as free of bones and muscles. One has the feeling of being a cloth doll, lifeless.
This happens to me more and more and you never know when or where. It happened to me outside the house and it becomes very difficult to manage. It can last a little or a long time creating many inconveniences.
What I’m most sorry about is not remembering what I’m saying. I exchange the words, I know I know what I mean but I can’t, I don’t remember the people and their names and they are not strangers but people I have always known.
There are days that I don’t remember how to iron a shirt (which I have always done even at work). There are days of great confusion: the head seems empty and is unable to process anything.
These are the cognitive problems that causes this disease. But it makes me angry not to be understood or seen badly. This disease apparently from the outside does not make us look like sick people. It often happens to be told but I find you well , or you don’t see anything, or they don’t remember that you have this disease and they tell you (are you not well today?). How can they not understand that every holy day I’m sick?
Maybe because they don’t see me in bed or because I never complain, but I ca n’t afford to go away and overwhelm my pain.
I can only count on my strength . I have no support or help beyond that of my husband.
A life is not a period that then passes, here it is about my whole life . Often I stop to think about what will become of me in a few years, I can’t think about my future in a positive way given the problems. I only know that I don’t want to weigh on anyone and for this reason, despite everything, I try to make an almost normal life, I don’t stop because I know that the day I stop is because you will have won.
As my rheumatologist says, this disease does not take away from us an hour of life, but poisons every day of our lives.
I am writing this letter because I would like people to understand and know this cursed disease. I would like people to take the trouble to read, search the internet, get informed. Only in this way can he truly understand what it feels like, how it feels.
Maybe so you will understand why there are days when we do not want to laugh or simply to speak. If we don’t have the strength to do certain things, if we feel confused, lost, tired, disheartened and much more. How would you feel, have you ever thought about it? There are sick people like me who feel ashamed or uncomfortable. I think people who leave us alone should be ashamed, those who walk away and don’t support us , those who don’t even remember the name of your illness.
There are very heavy and difficult goirnate and we must always pretend nothing , print a smile and go on. Do not believe that it is easy to live like this, we have an enormous weight that we keep within ourselves so as not to poison the life of those around us.
But don’t forget who you have next to you . We often have to solve problems or help and support others. This makes us even more fragile and vulnerable.
We live in a body that now has limitations and as far as we would like to command it, he decides for us. I am learning to live with her, but there is no day without pain. Pain not visible in the eyes of others.
Even if I laugh, it’s because I don’t want to give up the things I love to do or did before. But that doesn’t mean I’m okay. I’m just trying to be normal. I try to be as healthy as you are .
With love, Isabella.