My name is Adeline and i’m 34 years old. I want to share with you , my emotions, my hopes, my daily life since i have a Systemic Lupus Erythematosus. Many people are asking themselves : oh well, I’ve never heard of this disease!
In latin, Lupus translate into the Wolf.
Indeed, too few people know, personnaly, i have the need to convey and reveal what has been my life for these past decade and today.
The disease was diagnosed to 23 years. Most of people with lupus, are women but sometimes men are also affected. This disease is known as orphaned.
We ignore the exact cause. Stability is possible, but, we are never immune from a flare. It remains invisible.
Sometimes, we do not suspect that i am ill. However, i take a heavy treatment and i feel a big faitigue.
At the beginning the symptoms are installed with a big depression, weight loss, and a fever. I also had, pains and joint swelling. It’s a rheumatologist who diagnosed me the disease according to the blood test. Thereafter, a wolf mask appeared on my face in the form of tasks.
Then, we diagnosed me a renal impairement. I almost lost my two kidneys. Without treatment all vital organs can be affected.
It’s a sneaky disease which no one can suspect the dangers and consequences on our social life, emotional and professional.
That is why , i will share with you 10 years of my life.
I think these people affected by this disease will find themselves in the story. And, those who don’t know it , can understand that diseases are not always visible. Thus, we can stop to judge without knowing.
The beginning of the disease where everything began :
at 23 years old, i’m a student at Metz in higher School of Marketing. After studying literature, law and commerce, i do what makes me happy.
I took my independence and i study and while working the rest of my time in a garden centre. Personaly, life is beautiful. I like to study for hours and devours my courses.
Until this day, i have dedicated my life to the study. The city of Metz represented for me a springsboard for success. I had ambition and i wanted to success at all costs. I let go of the 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 likes the world of the night. I wanted to write stories about the world of the night with his atmospheres and freedom of rays that reigned there. I am young and carefree,with faithful friends.I would like to stop time. An apparently thin, tall and pretty, i have not had any problems to make me appreciate. I live fully events and i enjoy my student life.
I love fashion and a positive image of me is important. It is a sign of respect of oneself and the others.
It was then that overnight,everything changed.One night after a hard day of work, i can not sleep. This night, i slept two hours.Seized by violents anxiety attacks and without any reason i am hospitalized.We asked me different questions to know why i was in this state.
If I had taken some illegal substances and not I took nothing. I had lost weight without really realizing it. We prescribe me one MRI cerebral and nothing visible was diagnosed. The break in my studies and work was necessary.The doctors put this on fatigue and pressure exert by studies. Why not? So i decided to take a year off and i went back to my parents temporarely in the Vosges. I resumed sport gradually, changed my mind considering the advice of doctors. Moral and physical fatigue were installed and my concentration was slowed.
However, I decided not to worry about that and I saw a friend who was studying in Lyon. Nothing better than a stay there to recover from my emotions and distract me a little.
Especially as some of my friends had fled after knowing that I could not go out to my liking. Indeed, they had found other interests as me. So,in Lyon, with my friend, we decided to go out. To the program : bar and night club. We made friends with two boys engineers. However, in the evening, i began to have big pain in the hands, wrists and joints were a slightly swollen. I had a headache and i was very tired.
I was so bad that I pushed my friend in the custody of pharmacy to take painkillers and aspirin. I had a high fever.
The next day i went back in the Vosges in my parents. I rested and i decided to consult a general practitioner. Indeed, my fingers were always swollen.
He found this very stranges symptoms. Moreover, now, i had leg cramps. So, he prescribed me a blood test and an interview with a rheumatologist. I was so waiting for results . After several sessions with the specialist, there was no inflammatory and deforming arthritis.
The diagnosis fell : my rheumatologist thought that i was suffering from Systemic Lupus Erythematosus. And it was the case.
For me, it was an disease abstract and when it was announced this we don’t imagine that it can be very serious.
The same evening when the diagnosis fell, i began to have pain and during the night they were very intense in all member.
My parents called the doctor on duty. He sent to the emergency. I had pain. We prescribed me some morphine under perfusion to maximum dose and i had still pain.
I spent a horrible night to emergency and I was admitted to a room very early in the morning for lack of space.
We prescribed me a shoc treatment : cortancyl, methotrexate, and others drugs….
I recovered little by little but I was always so weak. Moreover, high dose cortisone taken had caused the water retention in 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 when i left and i saw my degradation. I looked bad and i did not return in my clothes. Why me?
I remember the words of a teacher came to see me in the room, « you are young you will hold out, nothing is due at that age ». It cheered me up in a short time. After this stay i was glad to go back home. A little salty and sweet diet began. Needless to say I could not eat anything. Fortunately, my mother prepared me adapted menus. My father was very quickly my confidant and helped me keep morale as well as possible.It was stronger than me and my mother until the end of their possibility.
So, after my hospitalization, i rested, again to my parents in Vosges.
However, after several months there was no improvement. Fatigue, depression and pain. A year after botches appeared. I consulted dermatologists in addition to different doctors who followed me in Vosges hospital.
At this time I had forged links with Micka friend who encouraged me to go out and still looking for work. Life does not stop despite the fact that I spent most of my time to sleep. With Micka, we went to several concerts, we made rackets hiking, bowling, going out with friends. However, he expected more from our relationship and i couldn’t bring him what he needed : a true relation.
So he finally gave up the idea of seeing me. Such is life!I had others concerns. I was more and more tired……My parents were very worried and decided to react. I almost talked over. It was no longer coming. My brain refused information. I closed myself on my own and i stayed in bed whole months except during their visit to the hospital. I suffered from the absence of my friends enjoying the party do rather than to worry my health.I was excluded. Only my parents and my two brothers came to see me in the hospital. Fortunately, i had their support. Time passes and I applied all the same to various positions in the Vosges.Doing nothing is not part of my vocabulary. I think I found it hard to remain passive with my parents.
Moreover, write cover letters spent me the time.I already loved writing. My state of health did not improve, so my parents decided to take an appointment with a specialist Professor of Lupus in Paris. They worried a lot. I had an appointment quickly at the age of 26 years. It was three years lost doing anything concrete, hardly seeing anyone and remaining in bed.
The end of August 2005, I go to Paris. I made a medical check-up and apparently my condition had worsened.
The Professor hospitalized me in Paris. A kidneys biopsy, diagnosed an deteriotion of these. It was necessary to begin a treatment under perfusion right now.
Mini Endoxan chemo and steroids. Alone with the disease, i never felt so sad, empty, tired. My parents were there, the teacher and the doctor who was doing a thesis. So i entered the Mountain protocol. The dose was prescribed Cortancyle maximum and took 15 liters of water. It was especially difficult before the illness, i was obsessed with the idea of keeping the line.
An adapted diet without gaps was necessary. The Professor and his team were very supportive. In Gorges Pompidou hospital, the team specialized in lupus is very competent.
In the Vosges, i did’t get the proper treatment.
However, we announced me that i was taken in a local authority.
Indeed, in the meantime, i had passed the competition of service public. I finished second and there were just two posts. So, i decided to begin this work even i was not in condition. I had to work anyway to ensure my future….
I had, however, to go every two weeks in Paris to receive my Endoxan infusion. After under contract, i go to see the mayor to keep him informed of health problems. Fortunately, he allowed me to go to Paris as many times as was necessary.
I took the rest of time my job at social service of the City Council. i liked this post, I found some meaning to my life. Help people gave me the resource, made me strong towards the illness. I made a friend : Laure. She is still at the moment. I alterned,so, treatment and work.I took shortly after a function apartment F3 in a small house.
The treatment is well assimilated despite a great fatigue.I think this is the most disabling in this disease is the feeling of fatigue that is present almost every day. I sometimes forget, however, when we forget it reminds us to order. Moreover, again, I noticed that it was increasingly present according to the years that pass.
At this moment, the moral remains excellent, I had taken over the upper hand on my disease. Little by little i remake a cercle of friends. Agnes was great. Beautician and passionate about fashion, she had always the smile. She gaves joy. we made shopping trips and it is crazy how good it gave me…I liked her. I had curves because of the treatment but i pleased again. My friend Agnes was there for me and considered like a good friend.I forgot the bad days. I have then 26 years and i felt well. After my infusion therapy, i took a oral treatment. The sessions in Paris decreased and i could blow.
The time progressed with ups and downs in my workplace. Colleagues put a spoke in the wheel to me but i stayed loyal to my job. Nevertheless, they changed my position : i was half in reception and half in Civil Registry. But, i had a job and i succeed despite the fatigue. As the time passed i became more confident, also, in the friendly and affective relation.
I smiled a lot and i think that people like my company. i have nearly 28 years. I stayed five years without really emotional relationships. The disease and the work took all my time. Anyway, my emotional relationships ended in a succession of failures. As the disease had taken over my Life and controlled all the points of contruction of a person in its environment.
The disease introduced me to all the black aspect of Life in all fields. Moreover, once it reminded me to the order when i began to be happy. Indeed, i met a man who made me come down even lower than the disease: i have also published a story in ebook: troubled thoughts. I lost my job, my life in the Vosges. In fact, when i met him i asked for my transfer to live with him in his region. Now I regret it, having known him too early. I rushed in my choices. Despite working in the pharmaceutical field, he remained insensitive to what happened to me. He preferred to party while the disease weakened me mentally and physically
After I installed with him, my illness returned in the disease. I underwent another chemotherapy. the same as the first. If I did not want to undergo the dialysis I was taken seriously by following my treatment.
Again, a strict diet was necessary.
I stopped my job at this moment and i put nobody informed of my resignation. I turned in myself because no one found the words to comfort me. I was not at my maximum at this time and the effects of the chemo caused temporary depression: that are the side effects of drugs. Cortisone resulted sleep disorders. I was misunderstood and it was a hard time. At the end i broke down, i ended my Relationship and i decided to go back to my parents in the Vosges. When everything is going wrong only my parents support me. I was again not in my place. Their help was very precious because my attempt to be well ended to a serie of failures and by a big physical and mental fatigue.
My parents still helped me . they showed me many countries and regions in France. these are good memories in their company. My parents learned me to become stronger and take Life more lightly . So, i accepted all hard knocks.
I see Life differently despite that sometimes remind me to in order to forget the worries and say that we have one Life. But, we do not change completely. A fragile nature anyway i think of being the favorable ground for the disease.
Today, i enjoy small pleasures to embellish my Life. And the chance that my illness can not be seen. It is great for me and i still hide it to certain people.
So, i discovered Mallorca, Croatia, Czechoslovakia, Bavaria, Belgium, all the regions of France……
This is my best memories in this last decades and whenerver i can i go towards others distant destinations. The journeys and discoveries are the mainsprings of Life.
I think that in others families would have let me down. So, i’m lucky. After that flaxhback holiday, i continue my story after this emotional episode more than painful.
So, i returned to my parents chaining some relapses. i try to build myself as best as i can. I also chain different works but my health do not allow me to keep them. The fatigue always took over. However, my parents were there but the absence of my companion was lived as an abandonment.
I went in Spain to reset . The holidays have always been a way to give me back hope of a better Life. My sun was not my ennemy anymore, although the exposure was not recommended. it acts positively in my emotional cycle and gives me well-being, a remedy against depression often present in this disease. i made in the sun my ally in protecting of him but not avoiding him.
Moral is as important to bear physical pain and regain confidence.
However, on the beach i felt invisible. I used to please before falling ill and in swimsuit i was pretty round due to the cortisone.
The changes made on my body had deeply affected me and reminiscence on the beach reminded me strongly. Moreover, my skin was very white, i should not expose myself.
After these holidays, i searched to rediscover myself little by little.I spent five years to do it, chaining severe relapses and perpetually looking for myself otherwise than through illness. I was primarily Adeline and not a sick person. I saw myself too much by it and in addition, i had developed hypersomnia, therefore, it was an unconscious form to deny my existence and hide my behind the wolf. However, i learned, to rediscover myself little by little in the solitude.
I resumed administratives activities in Meurthes et Moselle. Lupus leave me alone at this time. I put it in a very hidden place of my head. I spent good times in this community and my incomes were beyond my expectations. I regained my independence and my brother got married. It was a good time and my niece grew up. It was not the right moment because of the wolf, to project something with a child. I think i am afraid to face a such event. One day, why not, when i will feel the strength.