Greenwords has written a brilliant post on ME Awareness Week - today, 12 May, is International ME Day. Her writing is always sophisticated and readable as hell. She finishes by saying:
'People with most other medical conditions are not subject to the controversy and subsequent stigma that people with ME are. It is heartbreaking to be yanked off stage-left by an illness, and then, while learning a new life for oneself, to sit by and watch bizarre medical politics play out across the globe, the outcome of which flows through and trickles into our daily lives, prejudicing and confusing our doctors, bewildering our family and friends, undermining the support we need on so many levels and leaving us to fight for every skerrick of medical and welfare support we do or don’t receive. It’s a travesty'.
'People with most other medical conditions are not subject to the controversy and subsequent stigma that people with ME are. It is heartbreaking to be yanked off stage-left by an illness, and then, while learning a new life for oneself, to sit by and watch bizarre medical politics play out across the globe, the outcome of which flows through and trickles into our daily lives, prejudicing and confusing our doctors, bewildering our family and friends, undermining the support we need on so many levels and leaving us to fight for every skerrick of medical and welfare support we do or don’t receive. It’s a travesty'.
12 comments:
I'll second that - it's a wonderful post.
If I didn't have a habit of sometimes laughing like a lunatic, I would be crying. Well said Greenwords and NMJ. This is a heartbreaking illness, accompanied by intense social isolation, as well as the constant struggle for medical support. Today I would like to fly a banner for all the children and young people who fall ill with this disease, for the disbelief they have to face and the incredible academic, as well as social losses they experience at such a crucial stage of their development.
Greenwords has a gift for getting to the nub of the matter. What is even more impressive is that she is so poorly herself and yet still manages to come up with the goods: triumph over adversity
Yes, Greenwords' writing has a wonderful quality, which is remarkable considering she is so severely ill, and I admire that she manages not to be harsh. I often find it hard to wade through all the ME 'literature', I feel so jaded & weary and I follow few ME sites/blogs, so is good to find a post that encompasses so much without boring the pants off...
Thanks for highlighting Greemwords' post, which I agree is a great one.
Best wishes from wild, wet and windy Wales, Maggie
a bit gobsmacked by your last remarks, NMJ - I don't know what ME 'literature' you are referring to or why you felt the need to spell out how bored you are. Not everyone has the wordsmithing gift, but many share what they can - and have done on http://meaware.wordpress.com/
Jeez, What a day this is turning out to be, Signs, are you serious? By ME literature I mean all the latest research that is going on - I don't keep up with it all, and because I read few ME blogs/sites I am not always aware of latest goings ons. Greenwords' blog post is emminently readable, not dry - you have blown this out of proportion and taken it personally it would seem. I am very surprised.
Hey Maggie, I thought you lived in Liverpool...
NMJ, I meant to add a p.s. to say that of course I wasn't taking it personally. If it were so I probably wouldn't have commented. "Latest research" clarifies somewhat - apologies if I misunderstood. Words ...
I can see where you might have misunderstood, Signs.
Hi NMJ, yes, I do live in Liverpool, but am at our caravan near Abersoch till Sunday. John (husband) had a week's holiday last week, so when he went home very early Monday morning I stayed on here. He got back last night as now he's on a 3 day week at work under the Carers responsibility thingy. So only works Monday to Wed (though sometimes that changes if other folks are off sick or on holiday). Makes it much easier for me to stay on alone.
I used to stay on here much more often, but the last couple of years since my parents died I haven't been up to managing a whole week alone - have a tendency to not have the energy to cook etc. But if it's only 2 nights and 3 days it's OK. I've been rather worse since my parents' deaths mainly due to horribly overdoing things over the previous 2 years with Dad being ill, but especially after he went into a nursing home and Mum got dementia and went into a different home etc etc. I feel I'm finally beginning to crawl out of the hole now, but still have to take it even more excessively easy than before. If any of that makes any sense!
Best wishes from Bwlchtocyn,
Maggie
hey signs, it's a few days later, i do feel horrible i was misconstrued & perhaps came across as some prima donna, blogging sucks for this! but if you look back you will see my post where i say my *own* posts bore me... talking about ME *is* boring, but we have to keep plugging away 'til the illness is truly accepted.
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