viernes, 16 de enero de 2015

#9 The Telegraph: 'ME: fear of exercise exacerbates CFS, say researchers' WHAT?

El orden cronológico de estos posts sobre ejercicio y SFC sería:

#52 Síndrome de Fatiga Crónica:Intolerancia al ejercicio
#9 The Telegraph: 'ME fear of exercise exarcebates CFS, say researches', WHAT?
#23 Enfermedad Sistémica de Intolerancia al Esfuerzo (aka SFC)
#34 Biomarcadores: El Síndrome de Fatiga Crónica es REAL

*Revisado 15-01-2017*

*Nota a los lectores en español: Esta entrada la escribo en inglés por un artículo que ha salido sobre SFC en The Telegraph ("Encefalomielitis Mialgica: El miedo al ejercicio exacerba el Síndrome de Fatiga Crónica"). Puedes usar el traductor y si tienes alguna duda consultarme por Twitter. Si sois varios podría hacer una nueva entrada traducida. Gracias.

*Note to English readers: Excuse the grammar mistakes, please. I wish you understand the idea. This is (a little part of) my expirience and opinion. Thank you.

Just the day I wrote a post about how was my activity before MEcfs and how frustrating is now for me the fact that I am unable to walk for ten minutes; just the day I wrote that I want to go for a walk like I used to do for two hours along the beach. That I want to come back to the gym and feel great after a pilates or spinning session. How frustrating is (again) the fact that I am even unable to do soft streching at home the last months due the severe fatigue and neurological and sensitive symptoms...
Just the day I wrote about how hard is any kind of physical effort to me during the last seven years and how exercise get worse my illness, I read this on my Twitter timeline:


It´s funny how some people call 'ME lobby' to what I call unity against the nonsense.
If I didn't lose my mind these years it was due my strength, my will, repeating myself again and again: 'It's not mental, something is clearly wrong in my body'. But it's easier for them to say 'it's all in your mind and beliefs' when they can't recognize that they don't know YET what MEcfs is, and how to treat it.

When you can't handle the many changes in your life that brings this whole situation, once you are diagnosed, the help of a psychologist is welcome of course. But not for improving (subjectively) the syndrome with BCT and exercise but acceping (objectively) your new ME. 
I felt lonely and lost. When I tried so hard to do the same things I used to do, to enjoy... and my body and mind felt down. For days, for weeks, for months... and working. It was the hell on earth.
I don't want to remember those awful days.
And my belief (because I didn't know yet that I was ill) was 'I can with this. What's wrong with me?' But I could't. It only worsen the situation.
I don't feel lonely anymore. Because I met people (thanks to the net) that have the same problems than me: we have to sit down after a shower due to exhaustion, we can't move of bed or sofa and we need to go urgently to the toilette, we are hungry but the knife for cooking is so heavy today...
So we aren't afraid of exercise. We have the clear and daily evidence of symptoms that worsen after a short walk or going upstairs.
And despite of that, we always try one more time.
'Yuppie illness'? I'm unemployed and I have a mortgage and bills to pay for my own. And the most important thing. I fought hard for getting my dream job. I got it. I loved it. And I lost it. Like other meant things I lost in this unexpected journey since the illness started.
So please don't judge what you don't know.
Do you really think I don't want to improve if I have a real chance? I wish!
But I dont want to be a guinea pig anymore. Up and down. Don't play with me and my hopes, please. I'm fighting hard every-single-day.
And maybe that's the reason why I have no fear.

This was my reply to the article

I read some comments. For HomelessFormerGuardianReader, MEcfs is a fake illness for those who have their lives resolved and for unhappy people (if I'm honest, if I have enough money I would preffer to travel anywhere rather to lie down on a sofa almost the whole day, but it's just my opinion. What would you do?). 

HomelessFormerGuardianReader deleted his comment

It's hard for your relatives and friends to understand MEcfs. We don't need this kind of... I'm going to be polite. But please, for you (The Telegrapph) it's just the space to cover in your daily issue. For us, it means to explain once again why we aren't the person who we used to be anymore.
Be kind. We are ill like everybody else with a serious illness. But without the support.

Tema relacionado:
#214 Mala ciencia en Síndrome de Fatiga Crónica #EMsfc PACE trial (Revision of PACE trial, 2016)


If you like it, +1. If you are in the net, share it. If you have something to say, comment!
Si te gustó, +1. Si socializas, comparte. Si tienes algo que decir, ¡comenta!
(Si tienes problemas para comentar desde dispositivo móvil, prueba a entrar desde G+)


6 comentarios :

  1. Sólo voy a decir que aquellos que se atreven a juzgar o criticar a personas que sufrimos estas enfermedades "raras", tendrían que verse en nuestro pellejo, a ver lo que hacen, a ver cómo se sienten, a ver cómo viven el día a día intentando no hundirse.

    ResponderEliminar
    Respuestas
    1. Y poco más que añadir, lo has dicho todo. Simplemente porque en mi trabajo sólo dos personas sabían que estaba enferma. Nadie se enteraba. Y tenías que oir a la gente por ir a trabajar con una gripe o una contractura que, por malos que sean, es algo limitado en el tiempo.
      Más de una vez deberíamos darnos una palmadita en la espalda al acostarnos por haber superado un día más como nosotros hacemos.

      Eliminar
  2. @crochetkid75 shared on Twitter this brilliant post: Stigma

    ResponderEliminar
  3. @AliW33 shared on her post the Action for ME's response

    ResponderEliminar
  4. I don,t want anyone to suffer a chronical, neurodegerative illness, but maybe some people deserve it.
    Try to understand how other people feel is always harder than simply criticize what one don,t understand.
    In my humble opinion that "news" don,t deserve any more comments.
    Maria (Cleo)

    ResponderEliminar
    Respuestas
    1. Some people just don't know the meaning of empathy, 'put you in my shoes'...

      Eliminar

AYÚDAME A ACREDITAR LAS FOTOS DEL BLOG

AYÚDAME A ACREDITAR LAS FOTOS DEL BLOG
Imagen diccionario: Dani Torrent