Para uma pessoa de fora, coisas como tomar o elevador em vez de um lance de escadas ou recusar convites para a festa pode parecer um reflexo de sua personalidade. Mas, para uma pessoa com fadiga crónica, estes podem ser lidar métodos que são essenciais para passar o dia.
Pedimos nossa comunidade doença crônica no Facebook para compartilhar as coisas que eles fazem que os outros podem não perceber é por causa de sua fadiga crônica. Suas respostas revelam os ajustes que muitas vezes devem ser feitas no dia a dia para economizar energia, e que as pessoas saudáveis pode não perceber o quanto de uma diferença estas estratégias fazem.
Aqui está o que a nossa comunidade nos disse:
1. “Certifique-se de que eu tenho um ‘buffer dia’ entre qualquer evento exaustiva e retomar a vida.”
2. “Vestindo PJs maior parte do dia se eu não vou sair. Alguns dias é muito doloroso para se mover e eu não posso fazer tarefas simples em torno da casa. É constrangedor às vezes. Eu me sinto mal.”
3. “Planejando meus chuveiros. Eu fiz um comentário no Natal sobre como eu desejo a nossa embaixo do chuveiro funcionou porque a maioria dos dias que eu gostaria de conseguir tomar um banho rápido, mas eu não quero subir as escadas. Namorado da irmã de meu marido disse: ‘Uau, você é tão preguiçoso.’ Eu estava vendo vermelho naquele momento e literalmente levou todos os bits de força de vontade para não lançar-se para ele “.
4. “Eu tenho que planejar tudo com base no que eu preciso para ficar pronto e quanta energia ele vai tirar de mim.”
5. “Eu me inclino, literalmente, o tempo todo. Nas paredes, nas mesas, sobre as pessoas, em carrinhos. Eu entrar em pânico se não houver algo para me sustentar diante.”
6. “Eu micromanage cada aspecto e momento de cada dia para determinar o que pode e não pode fazer e descobrir como fazer as coisas. Isso por si só é desgastante.”
7. “ Eu não convidar as pessoas a minha casa. É sempre uma bagunça e eu me sinto mal sobre isso, porque eu simplesmente não tenho energia para mantê-lo arrumado. Eu uso PJs durante todo o dia todos os dias, a menos que seja absolutamente necessário sair. Minha casa é meu refúgio do negócio do mundo. O único lugar eu me sinto confortável “.
8. “As pessoas não percebem que a 25 a 33 anos o meu pai levou-me coloca muito porque eu tinha cérebro nevoeiro da fadiga crônica.”
9. “Encontrar uma sala silenciosa no trabalho para fechar os olhos e descansar no meio do dia. Às vezes, apenas estar longe das pessoas para alguns momentos me permite recarregar apenas o suficiente para fazer passar “.
10. “Exercício. Parece contra-intuitivo, mas se eu não os meus sintomas piorarem. Então você esticar através da dor e empurre a quantidade certa “.
11. “Lendo sob uma montanha de cobertores. O peso me conforta e me faz sentir aterrada. Ele pára os espasmos que o rock meu corpo também.”
12. “Muitas vezes as pessoas me elogiam quando eu uso um dos meus largas tiaras. Às vezes eu deixá-los no segredo e dizer: ‘Muito obrigado! É porque eu estive muito cansado para lavar meu cabelo assim que eu estou cobrindo-o ‘”.
13. “Sempre vestindo roupas confortáveis, não restritivas de modo a qualquer momento eu posso deitar um pouco quando fica muito ruim.”
14. “Eu tenho miastenia grave e pode fazer mastigação e deglutição difícil ou impossível. À noite, quando estou mais cansado, muitas vezes eu não posso terminar o meu jantar. Garçonetes insistem em pedir várias vezes porque eu não terminar. É realmente muito intrusiva. Eu só deve ter que responder sim ou não a ‘Posso levar o seu prato’, sem uma explicação!”
15. “Eu passo muito de passos de tempo contando. Por exemplo, no cinema eu sei exatamente o quão longe as casas de banho e saídas são. Eu não vou ser o primeiro a sair, mas eu aposto que você eu vou fazer isso!”
16. “Manter meu cabelo curto. Está fora de praticidade. Menos cabelo para gerenciar, pincel e lavagem economiza energia valiosa.”
17. “ Ignorando textos ou telefonemas por causa de dificuldades cognitivas graves e / ou cansado demais para escrever ou falar.”
18. “Eu comer alimentos preparados no forno para que eu possa comer em vez de deixar comida metade cozido todo. Eu queimar alimentos de esquecê-la no fogão ou acabam largando-o no chão por acidente “.
19. “Às vezes é difícil de explicar para os amigos e colegas de trabalho porque eu tomo o ônibus duas paradas em vez de apenas a pé, ou tomar um táxi quando eu poderia pegar o metrô (todas aquelas escadas!)”
20. “Eu sempre tenho muito preocupados com os convites para festas em toda a cidade ea oferta para apenas ‘acidente no sofá.’ Normalmente, eu iria e não apenas beber. Não porque eu não queria ‘festa’, mas porque eu sabia que eu não iria dormir em um sofá, porque eu tenho como um disco tempo de sono e porque mesmo uma bebida me faz sentir horrível. Sempre tem ‘falta partido,’ ‘Pare de ser um arrasto,’ ‘Apenas um tiro’ – Não. Uma noite fora seria igual a cerca de dois dias para baixo “.
21. “torcendo as mãos e balançando as pernas ou balançando para frente e para trás. Eu olho como eu estou esfregando loção em minhas mãos o tempo todo, mas realmente estou tentando aliviar um pouco a dor através de meu próprio calor do corpo.”
22. “Eu sempre tem que ter um carro no mercado, mesmo se eu só estou recebendo algumas coisas – eu preciso dele para apoio ou até o final da viagem I quase não vai ser capaz de chegar ao meu carro – o pior parte está apenas em pé na fila para sacar! Isso pode realmente arruinar um ‘bom’ dia “.
23. “Eu não saio de casa às segundas-feiras. Eu frequentemente exagere nos fins de semana com a família e amigos. Então eu preciso de um dia para a recuperação – Eu não abrir as cortinas, eu não respondo a porta, desligue / desligar os telefones, e ficar na cama descansando até que eu me levantar para fazer o jantar “.
Que coisas que você faz que as pessoas não percebem que você está fazendo por causa de sua fadiga crônica? Compartilhe nos comentários abaixo.
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see new stuff on your site.
Hmm it looks like your blog ate my first comment
(it was extremely long) so I guess I’ll just sum it up what I submitted and
say, I’m thoroughly enjoying your blog. I too am an aspiring blog
blogger but I’m still new to everything. Do you have any points for beginner blog writers?
I’d definitely appreciate it.
Very good info. Lucky me I ran across your blog by accident (stumbleupon).
I’ve bookmarked it for later!
Your style is unique in comparison to other folks I have read stuff from.
Thank you for posting when you have the opportunity, Guess I will just bookmark this web
site.
When I initially commented I clicked the “Notify me when new comments are added” checkbox and now each time
a comment is added I get several e-mails with the same comment.
Is there any way you can remove me from that service?
Cheers!