No conozco a nadie más con nuestra enfermedad, pero ¿es normal sentirse bien y luego ¡pum! Te sientes como si hubieras chocado contra un muro de fatiga y tienes que cerrar los ojos aunque sea una siesta de 10 minutos?
Yes, unfortunately. You will learn how to husband your energy, keeping in mind always that one needs enough energy to return from any journey undertaken.
Hola Lisa, sé cómo te sientes. Algunos días estoy bien, pero otros días me siento muy somnolienta. Es la condición que tenemos, pero siempre sigo adelante e intento pensar de manera positiva. Otra cosa que hago para intentar mantener mis niveles de energía es tomar un batido de proteínas para aumentar mi energía. No estoy segura de si esto funcionará con todos, pero me ayuda a cuidarme.
Chistes
Cuídate
Sí, todos los días lucho contra el cansancio.
Tú sigues adelante, pero luego tu cuerpo dice 'basta, a dormir' y para mí, a menos que esté trabajando, es la ciudad de los ronquidos jajá.
I can kind of relate.. I can't actually nap (I have two little boys) but I have moments when I'm ok not doing anything strenuous, then suddenly I am trying to catch my breath. Even when I catch it I feel extremely tired, irritable, and just wore down.
Lisa,
I also have the same issue. That's why it's so hard to plan ahead, you never know when the fatigue will hit you. We've done some traveling, and there were days that all I really wanted to do was lie around, but I forced myself to keep moving and site see.
Beth
Esto ha resultado ser el efecto más problemático y estoy de acuerdo en que es impredecible. ¿Es mejor intentar superar la fatiga o esto empeora las cosas?
deborah,
I'm retired now, but when I was working, it was a struggle. I had a desk job, but mentally challenging (financial accountant) and deadlines to meet each month. There were days when I should have stayed home in bed, but went to work. I wasn't able to keep control of my health. My boss and co-workers were very understanding, but my work ethic went ahead of my health.
I have been able to get my Bx under control now. I still have bad days, but more good days.
Tips for you with young children:
Pace yourself, While working in my flower garden, I take a lot of breaks to catch my breath.
Set priorities (one Xmas, I made a list and did the most important ones at the top of the list. (didn't get Xmas cards out that year, low priority).
It's ok if you ask for help.
As your children get older, they will be able to understand your limitations.
AND if you think your meds are not working for you, talk to you specialist. Everyone is dfferent, so what works for one person, may not work for you. If your specialist is so so with your care, find a specialist that will be more proactive with your care.
Have you tried alternatives? Essential oils, certain vitamins or minerals? I take Turmeric everyday for it's anti-inflammatory properties. and ginseng. I have in the past, taken Manuka honey for it's antibiotic properties.
Have you ruled out food allergies? Some people on this forum, have limited their dairy intake with positive results.
And of course stay away from sick people and wash hands and use hand sanitizer.
The internet and this forum are full of useful information on improving your health.
Keep in touch, Beth
Hola Beth,
Gracias por tus útiles consejos, tengo un trabajo agotador pero ahora voy a trabajar a tiempo parcial, así que espero que eso ayude. Algunos días podría dormir todo el día, pero tienes razón sobre las prioridades y no importa si la casa no es perfecta.
Los mejores deseos
Deborah
Debes escuchar a tu cuerpo. Si te sientes cansado, haz una siesta o simplemente siéntate a relajarte con una taza de té. A veces no puedes sentarte. Me lavo las manos con agua fría para despertarme. Puede sonar loco. Me siento mejor
Sí, eso me pasa, especialmente si he perdido el sueño. Debo ir al baño con frecuencia durante la noche y tengo dificultad para volver a dormirme. Es entonces cuando más me afecta. Una siesta de 20 minutos a una hora me prepara para volver a empezar. Soy mayor (83 años), lo que puede tener algo que ver con ello.