Uma carta aberta aos meus amigos e familiares:
É difícil explicar fibromialgia, osteoartrite e doença crônica. É mais do que uma dor constante – é exaustão, falta de energia e uma infinidade de outros sintomas que tornam o funcionamento cada dia muito difícil. Alguns dias são melhores do que outros, e então eu costumo invadir coisas para fazê-los.
É como se tudo fosse amplificado – temperatura, cheiros, sons, sensibilidade a luzes brilhantes e dor. Apenas tudo.
A coisa é, não importa o quão difícil eu tente, quando o tanque está vazio, não há reservas e os níveis de tolerância tornam-se zilch. Eu tenho que tirar a energia que eu tenho, e é um malabarismo e muitas vezes algo que eu tenho que pagar mais tarde. Eu tendem a preferir estar sozinho porque a interação social tornou-se árdua.
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Estou fazendo o melhor que posso. Algumas pessoas não entendem a doença. Eu decidi falar e sair em vez de encobrir como eu sinto e estou fazendo o que eu preciso fazer para me permitir viver e lidar o melhor possível. Isso inclui reduzir os estressores, não fazer o que não posso fazer, e assim por diante.
Tenho a sensação de que algumas pessoas são de opinião que não pode ser tão ruim assim. Claro, estou ciente de que a maioria das pessoas não consegue entender completamente algo, a menos que isso aconteça com eles, mas deixe-me dizer-lhe, não é tão ruim … é muito pior.
Eu luto todos os dias, por isso, alivie as expectativas, aceite que não posso fazer algumas coisas, respeito as limitações e não tome as coisas pessoalmente. Eu sei que é difícil para alguém que pode limpar o chuveiro ou o banheiro com facilidade, por exemplo, para entender como é quando as tarefas diárias assumem proporções gigantescas.
Se você quiser ajudar, pergunte-me – não assuma que você sabe o que é melhor para mim. As coisas não são sempre como elas aparecem. Provavelmente eu pareço muito bem. Tente não julgar, a menos que você ande nos meus sapatos. Eu não quero simpatia, eu só preciso que você tente entender.
Estou fazendo o melhor que posso.
Estou aprendendo que tenho que fazer o que é certo para mim, não o que é melhor para todos os outros, e se isso ofender ou pisotear suas sensibilidades, desculpe. Eu tenho passado com o cuidado de não chatear ninguém ou machucar seus sentimentos. Estou muito cansado por tudo isso. Estou aprendendo a dizer “não” com mais freqüência.
Tony sabe e entende. Ele me viu no final da minha amargura, muitas vezes ultimamente, quando a dor é tão ruim, eu estou fora de mim e as lágrimas estão caindo como uma conseqüência, porque não há mais nada disso.
Se você ainda não está convencido, fale com meu médico – ela o colocará certo
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