Who I am

THE BEGINNING OF THE DISEASE WHERE ALL STARTED:

At the age of 23, I am a student at Metz in Marketing Higher School. After studying literature, law and business, I do what makes me happy.

I took my independence and I study while working the rest of the time in a garden center. Personally, life is beautiful. I like studying hours and devouring my classes. Until now, I had devoted my life to studies. The city of Metz represented a springboard for success. I had ambition and I wanted to succeed at all costs. I let go of emotional relationships that often did not last.

At this time, I have other passions: mountain biking, cross country, and volleyball. I also like to dance and love the world of the night. I wanted to write stories about the world of the night with its atmospheres and rays of freedom that reigned there. I am young and carefree, with loyal friends. I wanted to block time.

Looking rather slim, tall and pretty, I had no problem to make me appreciate. So, I fully live the events and I enjoy my student life. I love fashion and returning a positive image of myself is important. It is a sign of respect for oneself and others.That is when overnight, everything shifted. One night after a hard day's work, I can not sleep.

That night, I slept two hours. Seizure of violent anxiety and without any reason I am hospitalized. I was asked different questions as to why I was in this state.

If I had taken illicit substances and not I did not take anything. I had lost weight without really realizing it. I was prescribed a brain MRI and nothing apparent was diagnosed.

A break in my studies and work was needed. The doctors put this on the spot of the fatigue and the pressure exerted by the studies. Why not?

So I decided to take a year sabbatical and I returned temporarily to my parents in the Vosges. I took up the sport little by little, changed my ideas taking into account the opinion of the doctors. A moral and physical fatigue had settled and my concentration was slowed down.

However, I decided not to worry about this and I saw a girlfriend who was studying in Lyon. Nothing better than a stay there to recover from my emotions and distract me a little. Especially that some of my friends had fled after knowing that I could not go out at my convenience. Indeed, they had found other centers of interest than me.

So, in Lyon, with my girlfriend, we decided to go out. On the program: bar and nightclub.

We were friends with two boys engineers. However, in one evening, I began to have severe pain in my hands, wrists, and my joints were slightly swollen. My head ached and I was very tired. I was so bad that I pushed my girlfriend to the pharmacy on duty to take antis pain and aspirin. I had a high fever.

The next day I returned to the Vosges at my parents' home. I rested and decided to consult primarily a general practitioner. Indeed, my fingers were still swollen.He found these symptoms very strange. Plus, now I had cramps in my legs. So he prescribes a blood test and an interview with a rheumatologist. So I was waiting for results. After several sessions with the specialist, it was not inflammatory rheumatism and deforming.

The diagnosis fell: my rheumatologist thought that I was suffering from systemic lupus erythematosus. And that was the case.

For me, it was an abstract disease and when one announces it one does not imagine that it can be very serious. The same evening when the diagnosis fell, I began to have pains and during the night they were very intense in all members.

My parents called the doctor on call. He sent me to the emergency room. I was in terrible pain. I was prescribed morphine under maximal dose infusion and I was always in pain. So I spent a terrible night in the emergency room and was admitted to a room only very early in the morning for lack of space. I was prescribed a shock treatment : cortancyl, methotrexate, and other drugs ...

I recovered little by little but I was still weak. In addition, taking high dose cortisone caused fluid retention throughout the body. I took 8 kg in two weeks and I was warned only at the end of the stay that we should not eat salt.

I looked in the mirror at my exit and saw my degradation. I looked bad and did not fit in my clothes. Why me?

I remember the words of a professor who came to see me in the room: "" you are young, you will hold on, nothing is over at this age. ""

It cheered me up for a moment. After this trip I was happy to go home. A slightly salty and sweet diet began. In other words, I could not eat anything. Fortunately my mother prepared me adapted menus. My father quickly became my confidant and allowed me to keep my spirits up. He was my best friend in the face of adversity. He was stronger than me, and my mother to the end of their possibilities.

So, after my hospitalization, I rested, again, with my parents in the Vosges.However, after several months there were no improvements. Fatigue, depression and pain. A year after tasks appeared. I consulted dermatologists in addition to the various doctors who followed me to the hospital Vosges.

At that time, I had a relationship with a friend Micka who encouraged me to go out and look for work anyway. Life did not stop despite the fact that I spent a lot of my time sleeping.

With Micka, we went to many concerts, racket rides, bowling, outings with friends.

However, he was expecting more from our relationship and I could not bring him what he needed: a real relationship.

So he ended up giving up the idea of ​​seeing me. Such is life! I had other concerns ... I was more and more tired ... My parents were very worried and decided to react. I spoke almost no more. It did not come anymore. My brain refused the information. I was closing in on myself and lying down for months at a time except when they were visiting the hospital.

I was suffering from the absence of my friends enjoying partying rather than worry about my state of health. I was excluded. Just my parents and my two brothers came to see me at the hospital. Fortunately, I had their support. Time passed and I still applied to various posts in the Vosges. Doing nothing was not part of my vocabulary. I think it was hard for me to be inert with my parents. Plus, writing cover letters spent the time. I already liked to write. My state of health did not improve, so my parents decided to make an appointment with a professor in Paris Lupus specialist. They worried a lot. I had a quick appointment at the age of 26. It was three years lost to doing nothing concrete,

At the end of August 2005, I went to Paris. I made a report and apparently my condition had worsened. The professor hospitalized me in Paris. A kidney biopsy, diagnosed a deterioration of these. You had to start a drip therapy right now. A mini chemo of Endoxan and corticotherapy. Only in the face of the disease, I have never felt so sad, emptied, tired. My parents were there, the teacher as well as the doctor who was doing a thesis. So, I went back to the Mountain Protocol. The dose of Cortancyle was prescribed to the maximum and I took 15 liters of water. It was hard to cash especially since before the illness, I was obsessed with the idea of ​​keeping the line.

An adapted diet without gaps was necessary. The teacher and his team supported me a lot. At the Georges Pompidou Hospital, the team specialized in lupus is very competent. In the Vosges, I did not have the appropriate treatment. However, I was told that I was taken in a local authority.

In the meantime, I had passed the public service competition. I finished second and there were just two positions. So I decided to start this work even if I was not in condition. It was necessary to work all the same to ensure a future ...

However, I had to go to Paris every two weeks to receive my infusion of Endoxan. Once under contract, I went to see the Mayor to keep him informed of my health problems.

Fortunately, he allowed me to go to Paris as many times as necessary.

I took the rest of the time my position in the social service of the City Council. I loved this post, I found a little meaning in my life. Helping people provided me with resources, made me strong against the disease.

I made a friend: Laure. It is still there today. I alternated, therefore, treatment and work. I took a short time after a business apartment: an F3 in a small house.

The treatment was well assimilated despite great fatigue. I think it's the most disabling in this disease is the feeling of tiredness that is present almost every day. I forget it sometimes however when we forget it it reminds us to order. In addition, I noticed that it was more and more present following the years that pass by.

Morale, at that moment is in good shape: I had taken over my illness. Little by little, I redid myself a circle of girlfriends. Agnes was great. Beautician and passionate fashion, she always had a smile. She gave me joy. We went out shopping and it's crazy the good it gave me ... I loved it. I had curves because of the treatment but I liked it again. My girlfriend Agnès was there for me and considered me a good friend. I forgot the bad days. I am 26 years old and I feel good. After my infusion treatment, I took oral medications. The sessions in Paris were decreasing and I could breathe.The time was passing with ups and downs in my professional environment. Colleagues put me in the wheel but I stayed true to my job. On the other hand, I was changed position: I was half at the reception and half at the registry office. However, I had a job and I got there despite the fatigue. As time passed I gained confidence, too, in friendly and emotional relationships.

I smiled a lot and I think people liked my company. I am almost 28 years old. I stayed five years without really forming emotional relationships. Illness and work took up all my time. In any case, my emotional relations ended in a series of failures. As if the disease had taken over my life and controlled all the building points of a person in his environment. She made me meet all the dark aspects of life in all areas. Besides, she reminded me once of order when I began to be happy.

Indeed, I met a man who made me descend even lower than the disease: I have also published a story in ebook: Thoughts Troubles. I lost my job, my life in the Vosges. Indeed, when I met him I asked for my transfer to live with him in his area. I regret it now, having known too soon. I rushed in my choices. Although working in the pharmaceutical field, he remained insensitive to what was happening to me. He preferred to party while the disease weakened me morally and physically.

THE RECHUTE

After settling with him, I relapsed into illness. I have another chemotherapy. The same as the first. The disease had attacked my kidneys again. If I did not want to undergo dialysis I had to take my treatment seriously by following it to the letter.

Again, a strict diet was needed. I stopped work at that time and did not let anyone know of my resignation.

I retreated on myself because nobody could find the words to comfort me. I was not at my peak at this time and in addition the effects of chemo led to transient depression: these are the side effects of drugs. Cortisone caused sleep disturbances. I was misunderstood and it was a hard time. At the end I cracked, I ended my relationship and decided to return to my parents in the Vosges. When everything goes wrong, my parents support me. I was not in my place again. Their help was very precious because my attempt to be well ended in a series of failures and a great physical and moral fatigue. My parents helped me again. Moreover, they made me discover many countries and regions in France.

These are good memories in their company. My parents taught me to become stronger and take life more lightly. So, I accept hard blows. I see life differently, even though sometimes I have to call to order to forget worries and to say that we only have one life. But we are not completely redoing ourselves. Fragile nature all the same I think I am the breeding ground for the disease.

Today, I enjoy small pleasures to embellish my life. And besides the chance that my illness is not seen. It's great for me and I still hide it from some people. So I've discovered Majorca, Croatia, Czechoslovakia, Bavaria, Belgium, all the regions of France .... These are my best memories in his last ten years and as soon as I can I go to other more distant destinations. Travels and discoveries are the engines of life.

I think other families would have let me down.

So, I'm lucky. After this flashback vacation, I continue my story after this emotional episode more than painful.

So, I went back to my parents chained some relapses. I try to rebuild myself somehow. I chained, too, different jobs but my health does not allow me to keep them. Fatigue always took over. However, my parents were there but the absence of my companion was experienced as an abandonment.

I went to Spain to rest. Holidays have always been a way to give me hope for a better life. My sun is no longer my enemy, even though the exhibition is not recommended. It acts positively in my emotional cycle and gives me well-being, a remedy against the depression often present in this disease. I made sun my ally by protecting me from him but not avoiding him. Morale is also important to support physical pain and regain confidence.

However, on the beach I felt invisible. I used to please before getting sick and in swimsuit I was rather round because of cortisone. The changes made on my body had deeply affected me, and the reminiscence on the beach reminded me strongly. In addition, my skin was very white, I did not have to expose myself anymore.

After these holidays, I started to rediscover myself little by little. It took me five years to do so, chaining serious relapses and looking for me perpetually, otherwise, only through illness.

Above all, I was Amelie and not an illness. I saw myself too much by her and besides, I had developed hypersomnia, so consequently, it was an unconscious form to deny my existence and hide behind the wolf. I learned, however, to rediscover myself little by little in solitude.

I resumed my administrative activities in Meurthe et Moselle. Lupus left me alone at that moment. I put it in a very hidden place of my head. I had a good time in this community and my earnings were beyond my expectations. I regained my independence and my brother got married. It was a good time and my niece was growing up. It was not a good time because of the wolf, to project something with a child. I think I'm scared to face such an event. One day, why not, when I will feel the strength. The loneliness in this fight was always present. For a year, I slept a lot. I was hypersomniac. No doctor explained it and I suspected the Wolf. My contract in Meurthe et Moselle ended so I

Of course my emotional life was also put in standby. I decided to leave Epinal to turn to Strasbourg. A friend of mine lived there and when I came to her house on weekends I forgot the disease and I opened to new horizons. In the end I just had to turn to life and adapt to every hard blow. Moreover, I overcame a lot of hardships during his 10 years when I was just a Wolf.

Now, I'm 34 years old and I do not want to lose a moment anymore. I want to enjoy life and devote myself entirely to my passions that help me forget that I am sick.

It's been almost two years since I live in Strasbourg and I'm living again. I learn every day who I am and forget more and more about the disease. I am passionate about therapeutic massages, I practice Volleyball, swimming and many opportunities other than administration available to me. I believe in change. Even if lupus remains, it does not take over my life. I adapt to him by trying to create beautiful memories. Every day is important and I even consider the future even if it's still abstract for me.

I want to live well and stop biting myself because of the wolf. This disease is invisible now and my body accepts the sport.

I listen and when my body claims something I accept it. When he wants rest, I'm good. Of course I keep a good lifestyle, fruits and vegetables of all kinds regularly, low consumption of salt, never except for alcohol, and I practice sport regularly except in times of relapse.

Taming oneself is necessary and promoting well-being is important. Refocus on a good mind by developing self-confidence. To see oneself and not as a wolf. A day will come when we will find a treatment that will stop the disease. I am sure of that, and even if it is the future generation that benefits, we must keep the faith.

We must remain confident in the future whatever happens. We must be an actor and not a spectator of our life. Although the road is long and fraught with difficulties, we must succeed and achieve goals for ourselves.