2023-09-30 08:07:36
She immediately apologizes for receiving us in her pajamas in her bed, her only “living space” today. A recluse life between the four walls of a room, sheltered from the light and noises that she can no longer stand. “I only leave the house twice a year and only to go to the hospital,” says Laëtitia Kerlo. It has been almost five years since the destiny of this 47-year-old mother living in the Rennes area changed. February 1, 2019 precisely. Full of life, she was then a first grade teacher in a school in Rennes. As the weekend started, a severe flu came and confined her to bed. “I have never been relieved since and I have never seen my students again,” she confides, wiping away a few tears.
For a year, doctors tried to understand the illness that was gnawing at her. In vain. “One of them even told me that I was making up my symptoms,” remembers Laëtitia. It was ultimately only in 2020 that a specialist from Angers University Hospital diagnosed him with his illness, myalgic encephalomyelitis. A neurological disease recognized since 1969 by the World Health Organization but which remains little known in France where it nevertheless affects to varying degrees several tens or even hundreds of thousands of people. “We have long called it chronic fatigue syndrome,” explains the forty-year-old. But it’s not fatigue that I suffer from but generalized exhaustion of the body. »
A cross on his professional, family and social life
On a daily basis, the life of this mother resembles “hell” from which she “cannot see the end of the tunnel.” » Every trivial gesture such as making coffee, brushing his teeth and even speaking requires a superhuman effort, forcing him to then rest. “I have to listen to my body and break up each activity,” she explains. Of her previous life, there is not much left except the love she has from her son and her husband “who takes care of absolutely everything and no longer has any leisure activities”. Recognized as a category 2 invalid, she has of course given up on the job she loved so much. Struggling to move around in her “centenarian body”, she has also given up all outside activity. “I managed to go on my terrace once this summer, a real feat,” she smiles. For the rest, my husband and my son go on vacation alone and I stay here. »
The hardest thing for this mother to bear is not being able to take care of her ten-year-old son. “He tells me about his school day but I can’t help him with his homework or play with him, it’s unfair,” she whispers. Devious and complex, his illness also shattered his social life. “I lost contact with a large majority of my family and friends,” says Laëtitia. I tried to explain to them but they don’t understand what I’m suffering from. And I can’t do this work for them. »
There is no treatment to cure the disease
Every day, she still receives a visit from someone from the fraternal assistance service in the town where she lives. “It’s a great suffering not to see anyone, we need human contact to feel alive,” she assures us. For the rest, and when her body gives her a little respite, Laëtitia tries to draw and scribble some logic game grids in her bed.
Next to l’association Millions Missing France which is organizing a national gathering this Saturday afternoon, it is also fighting to raise awareness and make visible myalgic encephalomyelitis, ME as they call it among themselves. “France must move forward on this disease with a real guideline because nothing is done for the sick,” laments Laëtitia, recalling that to date there is no treatment in the world to cure, or at least alleviate the disease. “I don’t know if I will ever recover. Or yes, maybe one day, but then I will be old,” she says fatalistically.
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