Like being in a boxing match

I'm very prone to post-cold coughs that go on forever - possibly because I have chronic sinusitis (from over-using mothballs years ago) and I can't use steroidal decongestant sprays  because of my eyes - but this has to have been the worst, almost five weeks of coughing. I had a vile summer cold beginning of July, that came and went, then a few weeks later I developed a cough from nowhere. Three lots of antibiotics and now an inhaler (which I think is helping, though I had to get a spacer, I just couldn't use it properly, all new territory for me). I am coughing much less now, but my poor ribs are still battered after more than four weeks of coughing and it feels like I am boxing myself whenever I cough or breathe deeply - the pain is so sharp and sudden. If I feel I am going to cough I have to clutch a pillow to my chest to try and cushion the blow. And even when not coughing, it can feel like having a clamp round your heart. I'm entirely used to back pain and am necking prescription painkillers (plus Ibuprofen) I use for my back for my ribs. I was hugely relieved that I got through my six-monthly eye check-up on Monday without coughing.

***

The  razamatazz and spin of the PACE trial saga has also felt a bit like a boxing match.  After spending £250 000 to prevent the recovery data from being released - QMUL are finally releasing the data,  a result, of course, of the recent tribunal. There has been, understandably, celebration and much anticipation on social media: the narrative of harmful nonsense has finally been toppled.

This graph (by Simon McGrath) represents published Lancet data (2011) versus original protocol-specified data (2016): 

PACE results don't look nearly so good now they've been released as  protocol-specified https://t.co/7SRXVwSdrj pic.twitter.com/EgRNAoxC8O

— Simon McGrath (@sjmnotes) September 8, 2016

The graph is explained more fully  here by Tom Kindlon, an Irish patient, who has worked hard to debunk PACE. Tom has been ill for over twenty years and is housebound as a result of graded exercise therapy (GET). Aside from the appalling anti-science of PACE, it is the narrative of 'mad, bad patients' that has been so galling, as health journalists unquestioningly and sycophantically jumped on the PACE bandwagon, ('cos The Lancet said it, it must be true). The Science Media Centre is certainly culpable for the way it has perpetuated this narrative of 'militant, dangerous ME sufferers':

“Mr Matthees points to press releases from the Science Media Centre, a body working with PACE researchers, to the effect that they were “engineering the coverage” to “frame the narrative” in such a fashion to discredit those with legitimate criticisms as misguided extremists by sensationalising a small number of indefensible actions to the detriment of the vulnerable wider patient ‘community’. This has been highlighted by respected scientists, and clinicians (see p87­90/B7). Rather, no evidence of a ‘silent majority’ in support of the PACE trial has been put forward.”[1]

All ME patients and advocates have much to thank Alem Matthees for, the ME sufferer in Australia, who is currently bedridden from his efforts of challenging PACE. It is unacceptable that someone with ME would have to go through so much in order to get to the truth. I hope the PACE team are  proud of themselves.

Tom Kindlon had this to say, which made me smile.

***

And thanks to @kafkaboots for telling me about Pierre Bonnard's Le Boxeur, it fits right in with this post:

More of Bonnard here, I love The White Cat too.

Rhubarb

Chopping rhubarb is utterly, bastard exhausting but it makes a lovely noise. And produces tons of water when you cook it (this, my first time). My friends gave me some home-grown at the weekend, the smell reminded me immediately of Henry and Michael, my mother's bachelor uncles, who wore green cardigans and were smoking and coughing every time you saw them. I think Henry only had one lung (I think he had TB). They would give us wee pokey hats (made from newspaper) of sugar and we would dip in the rhubarb from their garden and it was sour-sweet, delicious, a treat we looked forward to. Am still coughing, especially when I speak, it is beyond ridiculous, and exhausting. Tonight, I ate stewed rhubarb and thought of Henry and Michael in their old green cardigans with brown buttons.

Foxes, snails & beautiful Italian men

At the weekend I saw a fox, I couldn't sleep and opened the curtains at 4am and there it was, slinking into the darkness, I wanted it to come back but it had vanished into the ferns. There's a snail making its way across the landscape of the shed, I usually hate/fear them, the bastards eat holes in everything but this one is beautiful with a blue-patterned shell. I watched most of Spain/Italy, my nephews had helpfully informed me that Italy are rubbish, they are Barcelona supporters, and must be delighted at outcome. Watching Italy is just not the same since the days of Totti and Maldini, though Pirlo and Buffon are quite beautiful (as is Balotelli though I am, of course, old enough to be his mother). I was curious about the word pundit and discovered it comes from Sanskrit 'pandita' which means 'learned' (although the opposite of learned is what you feel listening to some of the commentary). It's the 2nd of July and 14 degrees, fucking appalling weather, I will need more than foxes and snails to cheer me up (though An Exploding Case of Mangoes is making me laugh out loud). ME has not been good, whenever I try and do any tasks/errands I get that creeping/clammy/adrenaline feeling, I used to get this a lot, it means things are not quite right. Still coughing like Steptoe, but not so frequently or violently.

Gems

I recently read a Ray Bradbury short story, 'The Veldt', from The Illustrated Man, first published in 1951, and I was blown away, it felt so modern - and creepy - and I wished I'd read him before now (I've only read the essays Zen in the Art of Writing). Then I remembered that in The State of Me, Helen admires a 'A Flock of Ravens': 'I just read a short story by Ray Bradbury, it's called 'A Flock of Ravens', I really liked the tone, the hysteria. The man who sold it to me couldn't bend his arms properly.'

So I realised I must have read it too (my book is a  handy aide-memoire). 

I very much like this recent Goodreads review of the novel. And enjoyed this Jenny Diski article on writing, or not writing, via Fictionbitch. (Also, in order to write you need to read. But you should never force yourself to read a book for pleasure, there is a time for every book to be read.)

I've been dipping into Bord de Mer by Véronique Olmi, a French novella I read of here. The language is simple and not too taxing. And I've finally started An Exploding Case of Mangoes by Mohammed Hanif, I've had a secondhand copy on my shelves forever.

I've had a crappy cold that's recycling itself - and a racking cough - I got antibiotics yesterday, it was getting ridiculous - and have woken up more than once feeling horribly ill, more from ME than anything, that horrible weakness-nausea in the very core of your muscles, and you think: Fuck, please go away, and thank your lucky stars you are no longer like this *all* the time, confined to bed, as some poor people are.

Which brings me to Dr Betty Dowsett, I was greatly saddened to read about her passing, aged ninety-one, a true champion of people with ME. She worked alongside Dr Melvin Ramsay. (I was diagnosed By Dr Behan in 1984 according to Ramsay definition of ME, but  did not, of course, know that at the time as it was the only definition, before all the nonsense and watering down.)

*I just saw this, neuro-immune model of ME, from PubMed, June 2012.

You've got the sea in your eyes

Had lovely few Christmas days (and birthday!) with my family. My favourite time, bedtime, bantering with my nephews who I was sharing a room with. I asked  if they would visit me when I was old and in a home, the 10-yr-old said of course he would, the 7-yr-old said he would write on a checklist 'have to visit my auntie', that's how he would remember. I'm still bemused that I now have a Kindle, a gift from my brother. I've downloaded Alan Hollinghurst (The Stranger's Child) and Mischa Hiller (Shake Off), I tried to download The State of Me, but apparently I cannot download the revised e-book (I downloaded the original in 2010 to my laptop when it was first released and it says I have already purchased). Since I now have a Christmas cold, the kind where the sneezes start in your feet and make their way up to your head, shaking you like a spin-dryer when they eventually happen, I will not be reading e-books or p-books (though I would like to finish The Hare with the Amber Eyes before Dec 31 as I started it in Jan this year). When I sneeze I look like I'm crying,  and yesterday the wee 7-yr-old said, You've got the sea in your eyes.  Though when I asked him later how to say in German - my sis-in-law is from Hamburg - I love you very much, Auntie N, he made a funny face and said Scheiße! before collapsing in hysterics with his brother. Not the only swearing going on, we got my (Danish) stepdad to say For helvede! a few times as it sounded like it was right out of The Killing.

A deluded Baroness

I'm over my Pope moment and back to being an 'aggressive secularist'. Still overdosing on Lemsip and menthol pastilles. Still angry - and insulted - at Sayeeda Warsi talking crap on Newsnight, saying that people of faith are more likely to donate to charity and do voluntary work. (I undoubtedly succumbed to a massive relapse of ME as a result of doing voluntary work in London in late 80s, and have volunteered periodically during stages of my illness.) I can make dodgy, spurious claims too, Baroness, and I would like to suggest that people of faith are more likely to be racist, sexist and homophobic. Looking forward to Stephen Hawking on Channel 4 though I am so muffled with cold, it is hard to absorb much.

The Pope just went past my flat

The most surreal event. I am addled with a stinking cold, and just woke up to helicopters, I knew they must be for the Pope, but I had no idea his route was coming up here. I opened my living room curtains to see the streets lined with police, and the Pope went right past a few mins later. It feels dislocating, like a hallucination. He just looked like a wee man with a tartan blanket round him. I softened towards him for a few minutes. This really was pure street theatre. Bizarre.

Drag

These are the colds I hate most, they don't really develop, but drag round your soul, then you think you are getting better, but next week they come back with a vengeance. Anyway, I am resting profusely for tonight's dinner.

People are getting excited about the new Sony Reader. I think I will hate it, but know it and its ilk are no doubt the future. But imagine this, no books on your shelves, just a row of electronic readers. Is that not depressing as hell?

Colds & Circles

I have a fucking cold, I hate colds, I hate the way they sneak up and grab your face in a claw of catarrh and heaviness. And they are recursive, they don't disappear in a week or two (as they should), but loop back on themselves, and you find that you are still sneezing and blocked up when you should have recovered. (And the real pain is my other symptoms worsen, that is the real drag, almost frightening, even after all these years.) Am distracting myself with Mother's Milk by Edward St. Aubyn, I waited for a long time to get it from the library and I am not disappointed.

And I miss my nephews. The older one's six-year-old friend told me that 'most things in the world are circles' - I am still pondering the loveliness of that thought.