Monday, 16 January 2012

Counting crows, & BBC Alba

And this is enlightening too, I didn't know they were so intelligent.

There are also crows in The State of Me:


helen         He’ll be so handsome in his graduation
                  robe and I should be with him, wearing my
                  polkadot dress – afterwards, they’re going to
                  the Ubiquitous Chip for dinner and I’ll be
                  stuck here counting rooks and crows.

stranger    What’s the difference between a rook and a

helen         A rook’s a kind of crow – a gregarious
                  Eurasian crow to be precise. They nest up
                  high and are very noisy.


The BBC Alba documentary on ME - as part of 'Trusadh' series - is out next Monday 23 at 9pm, the second part on Monday 30. (If I have a lisp it's because I'd recently had my wisdom tooth out.)

Come September/October of this year I will have been ill for almost thirty years. It's a long time to have been ill, a long time to have dealt with all the bullshit. I remember my first symptoms like yesterday, but I do not remember the last day of feeling completely well. I was not yet nineteen when I got the Coxsackie virus, which triggered  ME. I had just gone to live in France as part of my degree, it should have been wonderful, and it turned out to be nightmarish.  And I know I come across as feisty and fighting, but I have the fragility that all of us with longterm ME have, and I have the 'scars' of not being believed.


homegirl said...

:( I'm so sorry.
My 10yr milestone is imminent & i know how i feel about that... cant imagine what 30yrs must feel like.
You are such a hero for not giving up Nasim. An inspiration.

nmj said...

thanks, homegirl, it *is* a long time, but thank god i am not severe (ie bedridden) these days, moderate with severe dips, though one is never safe with this illness, you never quite know what is round the corner - the uveitis saga was really quite a scare (thankfully, in remission, no eye drugs, am touching all the wood i can see!).

and ME still dictates everything i do (and can't do!), am just so used to it, it is normal for me to have more or less constant PEM/exertion-induced pain.

and, i remain angry at those self-serving, arrogant medics who have effectively scuppered biomedical research for last three decades, though the tide is turning, slowly, but surely.

if i had only known to rest properly at beginning and not pushed myself - as many of us have done with dire results - to get back into life i am sure i would be more recovered now.

simon wessely may be reinventing himself with his website as the caring, saviour of PWME, but we all know he is distorting events bigtime.

i thank god that i was diagnosed almost a decade before he hijacked our illness.

nmj said...

Just saw this study on post-exertional pain and fatigue in ME and MS - via Dr Speedy:

Crafty Green Poet said...

30 years of ME, I can't imagine that. I think it is shocking that so many in the medical profession are so ignorant.

Crows are amazing, such intelligent creatures.

nmj said...

Thanks, Juliet. Yes, it is shocking, the power of a clique of psychiatrists and toadying health editors has effectively halted the chance of any significant breakthrough in this illness for the whole time I have been ill.

And, yes, crows are simply fascinating.

nmj said...

More on Simon Wessely's reinvention of himself as the kind doctor who has done so much good for PWME. I refuse to link to the man's website, the link is included in this illuminating text from Invest in ME via dr speedy.

And let's just recall how SW demonised PWME with his inflated media performances last summer.

And also worth pointing out that he seems to relish obscuring the fact that some of us were being diagnosed with ME by consultant neurologists in early/mid eighties, long before his own involvement/ hijacking of the illness.

His account of neurologists in London being 'irritated' by people with ME is not my experience at all. Maybe SW was not aware of the state of ME in Scotland. In fact, Prof Behan, who diagnosed me, appears in Part Two of the upcoming Alba doc.

SW, once again, simply strikes me as a master of manipulation: it's really just all about Simon. To hell with people with neuroimmune illness.

nmj said...

Cusp said...

You and I ....two 'veterans' as I believe 'pwme for a long time' are now being called . M.E. since 1972/3 but only diagnosed 11 years ago. Same as you...moderate but teetering on the edge: a life blighted and as angry and frustrated as you.

nmj said...

Hey Cusp, That's a long time for you. Yes, I am moderate now with severe dips, as I said, but cannot, for example, go out every day. I'd say housebound one in three days, that's in a 'good' phase, but I live in city and everything is literally on my doorstep, or a street or two away, which is great.

And I don't have to walk, I can bus pretty much door to door for most other things.

I could not live in a city like London, it would do me in (and in fact did do me in when I tried!). Edinburgh is perfect from an energy p.o.v.

I was severe - bedridden - to begin with, and again when I relapsed catastrophically in late eighties - after pushing myself way too hard. I have never got beyond moderate.

I honestly do not know how those with severe, unrelenting ME cope. It really is hell on earth to be severe.

I generally am a fairly happy person and only feel angry and frustrated when ME is misrepresented - which is, of course, quite often, these days.

For many years I did not keep up with the ME world, I really had had enough and was just getting on with life as best I could, but the writing of my book meant I had to engage again, and now with the internet it is hard to disengage, but sometimes I feel it would be better not to know what is going on. When they make a breakthrough I am sure I will be told!

I hope 2012 has been kind to you so far, my dear x