"We are asking people all over the world to send their photo by email for the mural we are putting together for the press conference to denounce this next Tuesday.
Please send your photo to aquatarragona@gmail.com (aquatarragona @ gmail.com)
You might also want to include some words of support to Mario."
Clara Valverde
MORE DETAILS HERE
Please consider taking some time today to send in a picture of yourself with a few words of support. I have done so. Photos and letters of support are requested by Tuesday.
Letter and photo I sent below:
To whom it may concern,
I am a patient with ME in N.Ireland. I am often confined to my recliner chair, because any exertion such as walking or even chatting with people takes more energy than my body can deliver.
However, I find that talking on the internet, where I can take as long as I like to compose my message, is very helpful and helps me to feel less isolated. Believe me, this is an isolating illness!
I can do so few of my past pleasures. I cannot even walk around the garden I created when I was well. I certainly cannot do the job I loved - which was teaching.
Yet, I am able to help others who also have this horrid condition. I can chat online, in my own time, and let others know I understand. I have shared a laugh with ME patients from many corners of the world via my computer. Doing so does not mean I am recovered - only that my suffering (and hopefully the suffering of those I chat with) is alleviated.
Please reconsider your decision to remove Mario's pension. If he is like me, he would be of no use to any employer due to the inconsistency of his abilities. Please do not deny him (and many others) the chance to alleviate suffering in their erratic good moments.
Most countries have very little support for ME patients, so the care that Mario is offering without charge should surely be valued and not punished.
I have attached a photo of myself having a quiet cuddle with my puppy - taken from my computer. This is where I spend much of my waking time - and often with the seat fully reclined back and a keyboard on my lap.
Please reconsider Mario's pension as a matter of urgency.
Regards,
Sally Burch
Northern Ireland.
*****
Note as an afterthought: I am not always totally confined to resting, but there are certainly days in a row when I feel unable to function much. I am however one of the lucky ones to have great support, and am therefore able to rest when needed. This support allows me to rest enough to be able go out on my scooter with my dogs, or to visit friends and family..... Yet the energy required to work is huge, compared to the energy I have available. I imagine it is like this for most people with ME.
Sally, thank you so much for sharing this with us. I will definitely be sending them my photo! As an M.E sufferer with a Spanish boyfriend and an M.E sufferer who spends time in Spain, it would be wrong if I didn't.
ReplyDeleteTimes like this we must use our energy on the greater cause!
Hopefully our responses will have some effect. We need to stick up for each other I think.
DeleteME know I could not work with ME!. ME can some time,s send a helpful Message to a friend in need. But that can be trying at the best of time. It doesn't last long with our limits on ME body. But who else will help these PWME ! If we don't . Co,s most people don't understand the full complex disease !. Just to take care of our self is a job in it self. This is shocking & cruel to a fellow ME suffer. & it as taken ME a long time to write this little pice. & in pain & upset tummy feeling sick, could be sick. Will someone employe ME with all ME problem,s in one body?. Yorning with watery eyes& running nose banging head pain,s can't cope with loud sounds& chemical smell,s & brite light,s . This as to stop NOW! Hope this Person get the care he very truly need,s. Sending TLC to you.X
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