Kiani, 23, foi diagnosticado no ano passado
“Eu cresci como uma menina despreocupada, alegre e raramente doente. Na escola, tudo estava indo bem, e eu logo descobri que eu queria fazer era babá. A vida estava sorrindo para mim … Até que, em meus últimos anos de estudo, eu tenho mais e mais problemas com o estômago e intestinos. O médico que eu vi me disse que eu tinha síndrome do intestino irritável. Eu tinha que ficar regularmente em casa, e eu estava exausto. Não foi possível encontrar a verdadeira causa dos meus sintomas: normalmente, I foi solicitado ‘é o estresse “.
No início, meus pais estavam realmente lutando para suportar que eu muitas vezes ficar em casa em vez de ir para a aula, eles me pediram para fazer um esforço.
fadiga extrema
Há dois anos, eu tenho a minha licenciatura em viveiro e eu queria continuar meus estudos para ser um professor no jardim de infância. Mas logo percebi que eu não era capaz de seguir uma formação tão pesada: nada, mas o passeio de eléctrico e andar a fazer para chegar à escola, eu estava exausto. Eu não tinha escolha, mas para colocar no armário meu sonho de estudar e de trabalhar em uma creche. Mas depois de uma semana de trabalho, eu peguei a gripe … Em geral, supera o vírus depois de uma boa semana de descanso, mas eu não conseguia livrar-se de: duas semanas depois, ‘sempre teve dores terríveis e eu estava realmente cansado.
Fui quase diariamente ao médico e ele rasgou o seu cabelo com o meu caso … Por meses, eu fiquei baixo, senti que algo estava errado com meu corpo.
Tudo ao meu redor vi que algo estava errado, mas o médico não conseguia entender o que estava acontecendo. Em desespero, eu me virei para a internet para encontrar uma explicação para os meus sintomas e eu caí sobre a fibromialgia: Eu falei com meu médico, que não descartou esta hipótese e me encaminhou para um especialista. Um mês depois, eu tinha uma consulta.
Um veredicto final
O especialista me fez passar uma bateria de testes e análises: no final, o veredicto era final. Eu tinha 99 centavos chances de sofrer de fibromialgia, mas o diagnóstico não pôde ser confirmada até seis meses depois, quando meus sintomas continuaram. Todos os meus problemas não só manteve, tinham aumentado em intensidade durante os últimos seis meses. Quanto aos meus problemas intestinais, eles haviam disparado … Eu voltou a sofrer uma série de testes, também em pontos específicos na fibromialgia. E o resultado foi implacável: Eu usava a marca da fibromialgia. No começo eu não conseguia ver bem o que significava: eu estava terrivelmente desapontado ao saber que esta doença não pode ser curada e que não pode fazer muito, se alguma coisa. No trabalho, eles não entenderam minha doença;
dor muscular constante
Hoje, eu vivo constantemente com dores musculares. Meu pescoço e ombros são as áreas mais tensas: eles estão constantemente bloqueado. Quando eu acordar de manhã, estou tão tenso que eu preciso mais de uma hora para se levantar. Eu também tenho que lutar contra a fadiga extrema:
algumas manhãs, o chuveiro é um desafio intransponível, eu tenho que levantar a minha energia para caminhar até o banheiro. Por causa da síndrome do intestino irritável, muitas vezes têm grandes episódios de diarréia e eu também pânico regularmente ou ataques de alergia.
Mentalmente, tenho grande dificuldade com a minha doença: Eu tenho todo o tempo se sente preso em meu próprio corpo. Eu quero fazer uma tonelada de coisas, mas meu corpo me mantém sempre … Todas estas coisas cotidianas, como uma longa caminhada com o cão ou uma tarde de compras, são inacessíveis para mim. Eu também sou extremamente sensível a quente ou a frio: se é muito frio ou muito quente, eu tenho dificuldade para mover ou eu estou nadando. Só que, às vezes, definitivas impede-me para fora … E depois há também todos os preconceitos sobre fibromialgia, com quem eu tenho que viver regularmente: muitos vizinhos e amigos permanecem acampados em idéias recebidas. “Tão jovem, e ela não funciona! Ela não parecem ir tão mal, ainda? “Eles dizem um monte de coisas na minha volta, mas eu não posso fazer muita coisa.
A luta contra a depressão
Agora eu tenho que lutar contra a depressão. Eu não trabalhei por dois anos e meio e eu não sei se eu posso começar um dia … Sem o apoio dos meus pais e meu namorado, eu já teria mergulhado em depressão. Meu cão também me ajuda tremendamente. Quando eu me sinto mal, eles sempre conseguem injetar um pouco de alegria …
Meu namorado me conhecia quando eu ainda não tinha recebido o diagnóstico e que eu poderia viver quase normalmente. Ele me viu-me lentamente deteriorar-se nos últimos anos, mas felizmente ele sempre tinha um monte de compreensão e nunca pensou em me deixar.
Benny se contente de moi, il n’a pas besoin de sortir les week-ends ou de rencontrer des amis: c’est mon plus grand bonheur. L’année dernière, nous avons emménagé ensemble, juste en face de chez mes parents. Quand j’ai trop de mal avec les tâches ménagères, ma mère vient me donner un coup de main. Mon blog sur facebook, Kiani’s World, m’apporte aussi beaucoup de réconfort: j’y mets tout le peu d’énergie qu’il me reste. Pour la plupart des choses, je suis devenue dépendante des autres: je vais devoir m’y faire… C’est loin d’être facile, mais je n’ai pas le choix. Eu preciso aprender a apreciar as pequenas coisas da vida cotidiana e abandonar meus grandes sonhos. O único que eu não desista, este é o sonho de começar uma família: Eu quero ser uma mãe. Fisicamente, ele não vai ser fácil para mim e eu vou precisar de ajuda externa, mas se há uma coisa que Benny e eu poderia sacrificar tudo, é bom ter um filho juntos … ”
Tamara, 31 anos, tem lutado por dez anos para a sua saúde
“Quando eu era pequeno, eu tive um momento difícil na escola. Eu tinha dificuldades de aprendizagem e fui assediado. Mas, graças a muitas horas de trabalho e minha vontade, eu finalmente se formou na secretária médica. I foi oferecido um emprego em um hospital. Meu primeiro trabalho misturava responsabilidades e estresse: ele rapidamente teve um impacto sobre a minha saúde. Eu sofria de pressão alta, tive dor contínua no peito e eu estava exausto por causa de contínuas mudanças de horários. Por um tempo, eu trouxe trabalho para casa … Meu médico finalmente me receitou uma licença médica e me enviou a um fisioterapeuta para tratar a inflamação do esterno. Depois de uma semana, a minha dor não foi aliviada, mas voltei ao trabalho, enquanto procuram outro emprego, com melhores horários. Acabei encontrando um novo emprego menos estressante para outro hospital. Durante seis meses, tudo correu bem, até que eu sinta uma dor aguda na mandíbula e dentes: os dentes sabedoria saiu, e levou recuperar através de cirurgia.
analgésicos potentes
A operação correu muito bem, mas alguns dias depois, comecei a ter enxaquecas terríveis que não aconteceram. Voltei a trabalhar depois de duas semanas, mas não foi fácil … eu me sentia mais e mais dor na mandíbula, então eu voltei para uma verificação: aparentemente, meu queixo tinha sido maltratado durante intervenção, e eu só precisa deixar um pouco de tempo para cicatrizar. Então eu tomava analgésicos, em casa e também no trabalho.
Rapidamente, os analgésicos simples já não eram suficientes, de modo que foi prescrito drogas muito mais pesadas.
Imediatamente após eu me tornar permanentemente vermelho e foi difícil para ir para casa à noite de carro. Recusei-me teimosamente a parar de trabalhar ou tomar licença médica. Mas logo depois, tive uma inflamação do pulso e foi ficando pior … Ao mesmo tempo, o meu pai foi diagnosticado com câncer, o que fez o meu trabalho no hospital ainda mais difícil. E eu logo senti que os meus colegas não foram bons para mim. Comecei a procurar um novo emprego, e eu me encontrei no serviço médico mútuo. Eu tinha um chefe que me e um trabalho que eu realmente gostei compreendido: por uma vez, tudo parecia acontecer para o melhor. O meu namorado e eu tinha planejado morar juntos no próximo ano e eu comecei a cozinhar aulas à noite.
A compota de volta
No começo estava tudo bem, mas logo senti uma dor nas minhas costas quando eu estava segurando uma panela. Mais uma vez, eu tive que tomar analgésicos muito fortes, e então eu fui forçado a abandonar o curso. No trabalho, também, estava sentado-me mais e mais doloroso. O médico achou a minha volta era muito tensa e me mandou para um fisioterapeuta. Mas não era melhor … No final, quando eu tinha finalmente encontrado um trabalho que eu gostei, a minha saúde me fez novamente paus nas rodas. Eu encontrei-me a tomar cursos especializados sobre dor nas costas, sem que isso tenha qualquer efeito. Eu estava tão desesperada que eu acabei indo para ver um neurocirurgião na esperança de que me ajuda, mas ele encontrou-me muito jovem para uma operação e aconselhou-me a continuar a sessões de fisioterapia, enquanto descansando … no processo, ele me colocou em licença médica por três meses. Foi muito difícil de engolir.
formado
Mas quando eu me encontrava em casa, eu percebi que eu realmente precisava descansar. Dormi muito, eu estava constantemente a tomar analgésicos e eu mantive as sessões de fisioterapia, além de “escola de volta”. Eu já não era capaz de fazer qualquer coisa e eu tive que deitar-se o mais rápido possível. Mesmo quando nós saímos com o meu namorado, ele tinha que ficar me ver mentindo. Felizmente, ele foi muito compreensão … Nós não moramos juntos, nosso relacionamento não tem que sofrer muito dos meus problemas de saúde. Minha licença médica foi duas vezes prorrogado por três meses, mas meus problemas nas costas não melhoraram até agora.
Quando percebemos que mesmo epidurals não teve nenhum efeito, eu estava queimado. Enquanto isso, eu permaneceu nove meses em licença médica e que tem, obviamente, teve um impacto sobre o meu trabalho: eu fui demitido por razões médicas.
Foi um duro golpe para mim, eu estava completamente dominado e eu afundou em depressão.
Uma operação de volta
Como o médico tinha encontrado uma lágrima em meus discos lombares, eu finalmente tive a cirurgia. Correu tudo bem, mas minha recuperação foi extremamente lento e complicado. Normalmente eu teria que andar novamente após dois ou três meses, mas nove meses depois, eu ainda tinha problemas segurando em minhas pernas. O meu namorado e eu decidimos morar juntos. Mas durante esse tempo, eu poderia fazer muito pouco. Minha mãe ainda teve deixar voltar para casa e me ajudar a tomar banho, vestir, um monte de pequenas coisas da vida cotidiana. Quando voltei para o cirurgião, ele disse que a operação não tinha trabalhado em mim. Antes de passar na mesa de operação, meu namorado me avisou que eu tinha que ter cuidado,
O diagnóstico de fibromialgia
Eu procurei e encontrei um novo emprego a tempo parcial no escritório de um médico de clínica geral no meu bairro, e eu me entreguei completamente a este novo trabalho. Mas mesmo se não fosse um tempo inteiro, fui rapidamente esgotados. Como eu tinha passado por muita coisa em um curto espaço de tempo, meu médico me aconselhou a ir ver um psicólogo. Enquanto isso, eu ainda estava dolorido maxilar, cabeça e nas costas. E, em seguida, em 2015, encontrei-me com um novo fisioterapeuta que descobriu uma obstrução grave no meu pescoço: ela queria me tratar acupressão. E quando ela apertou um dos pontos associados à fibromialgia, senti lágrimas de dor invadindo meus olhos. Naquela época, o diagnóstico foi mencionado pela primeira vez. Foi confirmado no ano seguinte, depois de uma bateria de testes inconclusivos. No começo eu estava feliz por finalmente colocar um nome para todos os problemas que tive de suportar até agora. Mas a euforia foi de curta duração quando soube que não havia solução para esta doença. Acabei de receber prescrições de magnésio e conselhos para se mover tanto quanto possível … Algo que, na verdade, eu não podia fazer!
A galera de amigos
Através da internet, descobri a Liga dos pacientes com fibromialgia, e eu rapidamente caiu em uma reunião de apoio entre os pacientes. dor nas articulações, dor nas costas, dores de cabeça, problemas intestinais: tudo o que eu tinha vivido durante anos foi revisto e ligada a fibromialgia. As peças do quebra-cabeça finalmente montado … Além disso, meu perfil foi visto como típico de pessoas: sempre pronto para outra, incapaz de desistir do trabalho, incapaz de dizer “não” e para poupar seus esforços …
Hoje estou novamente desempregado há um ano. Em fevereiro, eu comecei a terapia comportamental no Hospital Universitário, para aprender a preencher meu dia da melhor maneira possível, à luz da minha fibromialgia. Esta terapia deve durar um ano, após o qual eu deveria ser capaz de retomar o trabalho. Mas eu tenho que mudar drasticamente meu estilo de vida, e eles não sabem que tipo de trabalho corresponderia a este novo ambiente. Idealmente, eu iria começar o voluntariado, então eu poderia tranquilamente ver o que eu ainda sou capaz de fazer.
Uma relação difícil
Meu círculo estreitou-se consideravelmente nos últimos anos: uma vida social muito ativa, eu fui sem contato com o exterior, ou quase. Felizmente, através da Liga, conheci pessoas que gradualmente se tornam verdadeiros amigos. Cada nomeação exterior deve ser planejado com bastante antecedência, e eu ainda estou propensos a desistir no último minuto, dependendo de como eu me sinto naquele dia ou naquela época.
Na minha não relacionamento, não é simples: meu estado tem muitas vezes causou tensões e dúvidas em meu companheiro . Meus problemas nas costas reduzir drasticamente a minha privacidade e o tratamento que eu levo tem feito muito abaixar a minha libido.
Meu fibromialgia foi um teste para a nossa relação, mas agora estamos juntos há mais de dez anos e que já passou por muita coisa. Felizmente, nem ele nem eu queria ter um filho começar uma família estava acima da minha força.
Um grande mal-entendido
Há um grande equívoco por parte do mundo exterior vis-à-vis os pacientes com fibromialgia. Eu mesmo tenho sofrido muitas vezes … Para longas distâncias, eu uso uma cadeira de rodas, porque, devido às minhas dores musculares e meu cansaço, eu não sou capaz de andar muito tempo. Agora eu vivo dia a dia: não é da minha natureza, mas eu não tenho uma escolha. Estou fazendo acupuntura, eu tomo analgésicos, antidepressivos e sedativos, e eu sou seguido por um psiquiatra para os meus distúrbios do sono. I dedicar minha energia ao meu tratamento clínico de dor e minha terapia comportamental. Eu também tento fazer algumas tarefas domésticas ou criativas coisas que eu faço quando eu não tenho dedos muito tensos.
Eu tenho uma ajuda em casa, para me ajudar a preparar as refeições, fazer detergentes para a roupa, passar, fazer compras e passeios. Eu também tenho alguém que me ajuda a lavar e vestir.
Meu maior objetivo agora é criar e desenvolver um grupo de apoio para pessoas com fibromialgia. Assim, minha vida pode servir outras pessoas, e apesar das minhas limitações, eu acho que vale mais. “
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