(no subject)
Kicking off M.E awareness week with a great post written by My Best Mate Kate, I would be so grateful if people would take a moment to read this weeks posts from people who are rarely ever heard or seen by the outside world due to the crippling effects from this Neurological condition.
It is ME awareness week. I don’t normally talk much about my illness, but this week is important. People’s awareness of and attitude towards M.E. is better than it was when I was diagnosed, nearly 14 years ago, but it is still has very far to go.
I am writing this for those who need others to speak up. I am doing it because I wish there had been more able to do it 14 years ago for me. For those reading this who want to know more but don’t feel able to ask, for those who don’t think to ask, for those who don’t know what to answer with when asked about it, for those who simply aren’t able to answer themselves. Awareness of M.E. needs to be more widespread, simple as that. Had it been 14 years ago, I most probably would have still got very ill. But the hellish journey of it all for me and my family may have been made easier. That would have meant a lot to me because when you get M.E., not only is your own life turned upside down, but so are those of your family’s and friends.
I’m not going to list symptoms. Those of us with it know well what they are. Those that don’t can read about them on any good ME website. M.E. is a cruel illness, it robs you of a ‘normal’ life and leaves you in constant pain. However, I want to acknowledge that it doesn’t just take away the big things, you know, like a full week’s work, playing in the park with your kids, going out shopping with your friends, a night on the town. It can take away the things you take for granted.
For all those who are too ill to feed themselves, never mind prepare and cook a meal; for all those who are washed by their carers in bed because they are too ill to even sit in the shower; for all those who are lifted onto commodes because they are unable to walk and are too ill to use a toilet; for all those who don’t enjoy kicking the leaves as they fall off the trees, or slapping on suncream when the first sunny day arrives, because they are too ill to leave their beds, they are too ill to even tolerate sunlight, who live in a permanent blacked out world; for all those who long to be cuddled and held, but who can’t be because of the physical pain it causes: all of this obviously sucks.
However, I want to acknowledge something else that also sucks and often goes unnoticed. How life changes for the people who CARE for us.
To those who watch their loved one become a shadow of themselves, to those who see their loved one in pain and can’t help, to those who long to hold them tight and tell them they’ll make it better but know they can’t, to those who try their damn best to do so anyway, to those who sit quietly with us just so we know we are not alone, to those who care for us and love us unconditionally, to those who feed us when we become too ill to feed ourselves, those who wash us when we can no longer wash ourselves, those who empty commodes, those who have to explain to people why the windows are blacked out, those who are on call for us 24/7, those whose lives stop in order to help get ours started again, those who fight our corner when we can’t fight for ourselves, those who never give up on us, those who celebrate any of our progress with us like it was Christmas.
To those who suddenly have to always set the dinner table for one place less, to those who have to grieve for the person that has disappeared, to those whose lives are drastically restricted as a result, to those who tiptoe around their house and listen to the TV with headphones, those who don’t have their friends in the house making a noise, those who miss out because they have to care for their loved ones, those who miss out or are neglected because their parents have to care for loved ones, to those who become more housebound themselves because of the 24/7 care needed, for all those holidays, coffees with friends, days at work, family outings that had to be cancelled, for all the tears and the frustration caused.
I could go on, but this year for ME awareness week I want to say thank you to those who who are affected by my ME and continue to love and care for me anyway. This year for ME awareness week I want to raise awareness for all those who can’t say thank you to those that care for them because they’re unable to express it. I want to raise awareness for those that sadly don’t have people in their lives to help them like I do, because of lack of understanding.
Awareness has to be better in order for those affected to have much quicker access to MEDICAL CARE, and for those who are carers to have access to HELP in doing so.
Posted via LiveJournal app for iPad.