Thursday 6 January 2011

Lull

Am still somewhat bedraggled after four days with nephews. I felt like I'd been in a zoo, but a lovely zoo. Playing Harry Potter Cluedo was a learning curve, I didn't know any of the characters or rooms (have never read or seen Harry Potter), it was more simple with Professor Plum and the lead piping. My six-year-old nephew hid under the overhanging table cloth so we couldn't see his cards. The board got dragged every time and we had to realign the pieces. The nine-year-old could remember what cards you'd shown him three turns ago and was quite gleeful when I asked for the same card twice, my own notes confused me, a whirl of asterisks and arrows, not very helpful in the end. We had secret wishes in the dark, the six-year-old and I, wearing animal masks. His were all about having the biggest toy in the world, until he realised mine were - deliberately so - about kindness and sharing and sun. He then changed his top wish to having a million pounds so he could buy cat food for all the poor cats that didn't have homes. It was so transparent, I don't remember the last time I laughed so much. I love being Auntie Nasim but I've been thinking how much I'm enjoying the lull, and thinking also what a calm word lull is - it just sounds what it is.

And from all the recent hurly burly of XMRV research, which I am just catching up on, we have the Whittemore Peterson Institute: 'Where do we go from here?' I see that Wellcome - irresponsibly and inaccurately - defines ME thus: Chronic fatigue syndrome (CFS) is also known as myalgic encephalomyelitis (ME). CFS is characterised by long-term tiredness or fatigue that affects the everyday life of patients. There is no known cure for CFS. I don't want to swear on my blog so early in the New Year, but 'long-term tiredness'. Really. Nice misleading euphemism, Wellcome! I thought science was about the pursuit of truth. And we wonder why so many people are diagnosed with ME when they don't actually have it.

5 comments:

Mim said...

Go ahead and swear.

When medical people suffer themselves, they often change their inadequate language and describe accurately.

Oh, delicious lull. Lull--isn't that a nice sounding fulsome word?

nmj said...

Hey Mim, I also don't like to swear in the same same post I talk about my nephews, maybe that is just sentimental foolery! Also, am trying not to waste energy ranting against ignorance. The only way these medics will fully understand is if they get ME themselves. Lull is the way to go.

nmj said...

...just to add, calling ME longterm tiredness is like calling MS longterm pins & needles or dementia a bit absentminded...

Rick said...

Damn, you mean I have both MS and dementia? Who knew? How have I held down a job all these years? ;-)

nmj said...

Rick, Maybe you just read lots and lots and lots of self-help books and were overwhelmed by such positivity that neuroimmune illness cowered and ran away? Or maybe you had doctors diagnose you who were using hopelessly inaccurate definitions! ;)