1000 NIGHTS AGO...

 

1000 nights ago…

 

She went upstairs to her bedroom.

And closed the door.

1000 nights ago.

Not left the room since.

Well, perhaps three times.

Once a week she moves to the other bedroom for a couple of hours, while her room is cleaned and bed sheets changed.

Otherwise, only summer heatwaves have driven her from her bedroom haven, to seek cooler climes – in the cellar for a few days and nights.

To a spare bed set up especially, plus medical supplies, drinks, toilet.

That migration, down the stairs, can take up to  two hours.

With a rest period or even a night stopover in the living room, before the final descent.

One day, we hope, she will return, to join us downstairs.

But in the meantime, her life is on hold. 

Halted because of complicated medical issues these past two decades. It was thought to be ME. Took her out of school for her teenage years.

Then came a blessed recovery of sorts, a hopeful interlude 15 years ago, allowing a measured return to education, mindful to take regular rest periods.  Her health improved, even to the extent she travelled to the States, but convalescing was an element during her stay.

The high point came in moving away from home to digs for college.  Culminated in a degree in (TV and film production). She did a mid-term spell with CNN, London.

A driven character, full of energy, an organiser. Her managerial skills made her a natural leader of production teams making films as part of her degree course.  Well liked, she had many friends. She doesn’t suffer fools gladly, even now!  Used to be able to talk anyone under the table on current news issues.

Then came relapse, and a return home, with her furniture – now stored in the garage.

At last, she had the first diagnosis: POTS (Postural Orthostatic Tachycardia) – when too little blood returns to the heart).  Triggered by movement.

This from a private heart specialist, who subsequently arranged further tests at Kings College Hospital, Denmark Hill.

The second diagnosis – from the Royal Orthopaedic Hospital at Stanmore –Ehlers Danlos type 3 joint hypermobility syndrome. This leads to chronic muscular pain, can cause dislocations.

1000 nights.

EDs weakens the entire body, makes moving around painful.

A gradual degrading process.

When POTs kicks in the heart will suddenly increase to beat very fast and is combined with drop in blood pressure: result, dizziness, risk of feinting.  

When this occurred while out, she became scared. No idea what it was. She learned to sit down on a bench until it subsided.

In the beginning a few days rest would provide respite, until the next time, perhaps in a day or two.

Days regularly became punctuated with stops to allow rest and recovery.

She became fearful of travelling, of even going outside, so she stopped,

1000 nights ago.

Ehlers Danlos is a genetic condition, which weakens the connective tissue.  That’s the glue which holds bones, muscle, and all our internal organs together. Imagine a bendy chassis of a vehicle. It wouldn’t roll so well, if at all.

There is no cure.

Sensory disorders followed – hearing: too loud; sight: sudden movement too fast; colours – too bright.

This led to curtailing social contact with friends. There would be no more visitors to the house.

It became a quiet house.

She no longer viewed or sent emails, would not take phone calls. No television, no radio, very little reading. No newspapers.  No playing CDs, until recently – slow, quiet meditative sounds.

She maintains a simple, short exercise routine, as recommended for her condition.

Time has stood still. 

1000 nights and counting.

Birthdays go unacknowledged, as does Christmas, Easter, neither is celebrated. Too much for the brain to take in.

But she does whisper greetings, with a smile, to her parents, her carers.

And every day there are hugs.

She will permit herself a laugh occasionally, at the juggling antics of her parents taking things into and out of her room. Rare light moments. Usually she is lying still, to control POTS.  Eyes closed. Sound deadening headphones on for much of the time.

Very occasionally, she has expressed a wish to be free again.

One day is much the same as another.  Day is followed by night, which is often sleepless.

1000 nights.

Punctuated throughout each day by her carers to maintain her many needs.

After a while it was realised she also has PDA – Pathological Demand Avoidance. Which means avoiding doing anything. It is  common on the Aspergers / autism spectrum. This is undiagnosed, but no matter, she ticks all the boxes.

Also ticks the box for Obsessive Compulsion Disorder, when everything has to be done in a certain way.

Anxiety is of a higher order than you can ever imagine, is perhaps the most wearing and tiresome for the patient – and for the carers.

A scheduled home visit by anyone, gas boiler engineer, electrician, doctor on a rare occasions – there is no regular medical review.  These visits cause days of anxiety beforehand, and days of exhaustion afterwards.

Research into anxiety and its cause among those with EDS Joint Hypermobility has revealed that the area of the brain controlling anxiety is much larger than normal: making it Impossible to “feel the fear and do it anyway”.

Researchers have decreed that there is “the genetic predisposition to anxiety.  It seems there is a significantly higher prevalence of autonomic nervous system symptom (dysautonomia) in joint hypomobility patients.”

… “Processes compromising function in neuro-developmental conditions may occur in individuals with hypermobility – enhance vulnerability to stress and anxiety.”

1000 nights.

Then there are meltdowns; frenzied fury at something or other, flying fists, kicking - screaming, crying, swearing… fucking this and fuck that, Shiting this shitting that……

When it’s over it’s as though nothing happened.

She takes care to avoid Hypoglycaemia, which can lead to sugar crash.  She knows the symptoms – often has crackers or protein drink to hand, or will call for immediate food.

Her slow digestive tract means rather than say three set meals a day, she requires several small meals during the day.

The kitchen can be a busy place from morning, noon, through until late.

1000 nights.

 

Hypermobile Ehlers-Danlos syndrome type 3 (hEDS) is generally considered the least severe type of EDS, although significant complications, primarily musculoskeletal, can and do occur. The skin is often soft and may be mildly hyperextensible. Subluxations and dislocations are common; they may occur spontaneously or with minimal trauma and can be acutely painful. Degenerative joint disease is common. Chronic pain, distinct from that associated with acute dislocations, is a serious complication of the condition and can be both physically and psychologically disabling.

 

Postural orthostatic tachycardia syndrome (POTS) is a condition characterized by too little blood returning to the heart when moving from a lying down to a standing up position (orthostatic intolerance). Orthostatic Intolerance causes light-headedness or fainting that can be eased by lying back down.

 

HOW COMMON IS PoTS? The incidence in the UK is unknown. However, it is probably under-diagnosed due to lack of awareness and non-specific symptomatology. It is five times more common in women and tends to affect people age 15 to 50.1 Apr 2016

Dysautonomia International estimates that POTS affects between one and three million people in the U.S. The majority of them are women.

Celebrating the Tour of Britain 1945 - 2021

As the Tour of Britain continues north to the Aberdeen finish in Scotland this Sunday, time to look back at the early turbulent years which spawned Britain’s premier cycle race. 

We have a bunch of rebels to thank for creating Britain’s tour, the British League of Racing Cyclists (BLRC) in the post-war years. The BLRC were a breakaway group defying the National body, the National Cyclists Union, by promoting road races on public roads. 

Racing was confined to time trials and track, although closed circuit road racing was permitted.

The NCU remained venomously opposed to this form of racing on public roads, which was so popular on the European continent. It would lead to conflict with the authorities, they feared, ignoring the fact that the BLRC had sought and gained police permission.

Nevertheless, the reactionary NCU tried all the tricks in the book to stop road racing until brought to heel by the international cycling union, the UCI who backed the rebels. In the beginning, the first Tour was the Brighton to Glasgow in 1945 - named the “Victory Marathon”, to celebrate the end of the War.

In the following years the Tour was sponsored by the Sporting Record, then most famously by the Daily Express. In 1954 it was the Quaker Oats tour. In 1958, it became the Milk Race, the longest running sponsorship in UK cycling history, lasting until 1993. 

All of this can directly be attributed to the BLRC, who handed the Milk Race on a plate to the British Cycling Federation formed in 1959, when the warring factions of the BLRC and NCU were forced to amalgamate to bring stability to the sport. 

During the final years of the Milk Race it overlapped with the new week long Kellogg’s pro tour (1987-94); this became the Prutour 1998-99. 

After a five-year break the Tour bounced back again in 2004, organised by Sweetspot, the current organisers. It began as a five-day and is now run in an eight-day format. 

Here are some of the famous home names who carried off victory. Scotsman Ian Steele won in 1951. 

He was followed by Ken Russell (1952), Gordon Thomas (1953) and Tony Hewson (1955). Party pooper who interrupted the party was France’s Eugene Tamburlini who won in 1954. As the Milk Race Bill Bradley won it twice, 1959 and 1960; Bill Holmes won it in 1961; Peter Chisman in 1963; Arthur Metcalfe in 1964; Les West in 1965 and ’67; Bill Nickson in 1976; Joey McLoughlin in 1986; Malcolm Elliott in 1987; Chris Walker in 1991; and Chris Lillywhite the final Milk Race in 1993.

 (Thanks to John Oxnard for the above details, provided for the Milk Race Reunion he organised in 2005). 

The Dutch won the Milk Race five times between 1969 and 1974, their Fedor Den Hertog winning twice. He made life a misery for the rest by setting such a high tempo whenever he hogged the front the acceleration killed off any conversation.

The Soviet Union became equally as dominant, and Poland and Czechoslovakia also took the laurels. The Milk Race was the big showcase race for the home riders. As well as the GB team fielding the best, there would be Wales, Scotland, while the Regions fielded the second best, giving youngsters a taste of the big time. In the mid-1960s very few police were involved and those who were had limited powers – there was no formal road closure order available back then. 

It took a death to prompt a police safety review of cycle road racing. The poor soul who died was Czech Zdenek Kramolis who was killed when he hit a lorry head on in the 1969 Milk Race. 

In the early days of the Milk Race there was no national escort group, and each police region the race past through provided only a few police to shepherd the race. Usually two of them. They had very little understanding of how fast a road race moves. Just as they were getting the hang of it, they’d reach the border of their region and hand over to new guys – who very often were new to this game, too. 

Riders could never sure if oncoming traffic would slow down, still less, stop for the race, and riders were instructed to keep to the left side of the carriageway, as per the Highway Code. There were static police at junctions to make the sure the race sped on its way. In theory! 

But one such officer, noting the race organiser’s car approaching from the slip road, put up his hand to hold the race while he cleared on-coming traffic from the main route! Phil Liggett, the race organiser driving the lead car, had a breakaway group up his bumper doing 35mph. He wasn’t about to stop. “Don’t stop me, Officer. Stop the traffic,” Ligs voice commanded over the PA. “I’m coming through.”

 And to the astonishment of the officer, Lig drove straight past him, followed seconds later by a breakaway group going full gas! At the stage finish a little later, Milk Race Controller Bill Squance tore a strip of the police inspector in charge of that section. It wouldn’t happen again, he was assured. 

Some of the police were more helpful than others. But then there was the Wrexham Kid in, er Wrexham!  His idea of control was to place his motorbike hard up alongside the peloton, making sure their wheels stayed on the left-side of the white line in the centre of the road! 

Policing improved dramatically in the 1980s, when Traffic Inspector Andy Relf of West Sussex was appointed by the Association of Chief Police Officers (ACPO) to improve police planning for the national cycle racing scene. Relf cut his teeth on cycle race policing at the 1982 World Road Race championships at Goodwood, in Sussex. 

And in 1994, he ran the police security for the Tour de France’s two day visit to Southern England. But even with vastly improved police control of the modern Tour, there are still risks. 

In 1998 there was the tragic death of PC Dave Hopkins when escorting the Prutour of Britain. How terrible that a man looking after the safety of others should lose his life doing so. Hopkins was a member of the 35-strong Police National Escort Group which brings oncoming traffic to a halt to allow the race through using both sides of the road. He received fatal injuries when in collision with a car 35 miles into stage five from Birmingham to Cardiff. An experienced motorcycle escort rider, he worked on cycling events and royal visits. The stage was cancelled. 

 As we can see, today’s Tour of Britain merits a huge police motorcycle and national (civilian) escort group operating a rolling road closure. 

 The one niggling doubt I had about safety when I was reporting the Tour of Britain a decade ago concerned the absence of static marshals at many of the side roads. Major and some minor junctions were usually covered but small roads often left exposed. 

I felt static marshals were essential, especially as the race uses the full width of the carriageway, often on the “wrong” side. The race back then relied almost totally on the police and national escort group rolling road closure to halt traffic. Is this the case today? 

I’ve been following the Television coverage and where the cameras have picked up side roads or car parks I have yet to spot a marshal. Am I being alarmist? Some roads were coned off. 

During my years covering the Tour de France I cannot recall seeing one side road without a marshal to hold traffic. And Le Tour is run on totally closed roads, not a rolling road closure. The possible consequences of leaving junctions unguarded doesn’t bare thinking about, with riders going flat out around blind bends! 

High profile winners of the Tour this past decade include Briton’s Bradley Wiggin (2013) and Steve Cummings (2016). Recent Continental stars to win include Mathieu van der Poel (2019) and the current world road race champion Julian Alaphilippe (2018), bidding for to win again this year.

The Irish comics in the Milk Race

After watching the live TV coverage of the opening stage of the Tour of Britain today, won by Belgium star Wout van Aert, I was delighted to see Irishman Rory Townsend take fifth.

For this provided me with the perfect cue for another Irish story in this second retro sketch of the former Tour of Britain Milk Race, the precursor of today's modern Tour. This time it’s a look at the less serious side of competition, interviewing a bunch of comics riding for Ireland, led by Sean Lally. Lally was one of the funniest Irish racing cyclists you could ever meet. Interviewing him and the Irish team during the 1978 Tour of Britain Milk Race was just one long belly laugh. Few riders could match Lally for laughs. Lally was the main culprit among the Irish; his face was seemed permanently creased with laughter lines. He had this reporter scribbling frantically to get down all he said. Also in the team were Billy Kerr, Tony Lally, John Shortt, Jim Maloney and Oliver McQuaid. Impossible to recall the facts of it, but it made a page in the mag… “Laughing all the way”. Fools? No. For they were also among the fastest finishers in the business. In the 50mph downhill Stoke on Trent finish that day, Shortt was fourth, McQuaid sixth, Sean Lally 10th. Tony Lally was the current Irish road champion, past winner of the Tour of Ireland and the Woolmark GP in England. Kerr won the Tour of the North at Easter and the Irish “25”. They coined the phrase, “Seriously funny”. For the lovely thing about the Irish is they will poke good natured fun at anyone and mostly at themselves. They won’t spare anyone, even the Americans when they first sent a team to the Milk Race. It was a big deal for the Americans. Nice guys, and very serious about everything, calling out to each other during the stage – “We’re on the climb now Michael. Are you OK?” The Irish boys were cracking up. And soon started imitating them…. Are youse still thar Patrick, you hang on a bit longer Patrick; we’re nearly over the railway bridge…. But don’t mock the USA. They were on a steep learning curve and got better every year, until their Matt Eaton won the 1983 Milk Race. Lally said his team has a great plan for the next stage. Did we want to hear it? Go on. “WE go like f… and hang on.” Cue for more raucous laughter. I daresay there must be a few comedians riding the 2021 Tour of Britain today. For example, race organiser Mick Bennett has some good lines. And did you know, he’s got racing form? He’s ridden a few Milk Races during an illustrious career which included two Olympic bronze medals in the team pursuit (1972 and 1976 Games), plus a Commonwealth Games gold. A look through the archives reveals a Milk Race best overall placing of 17th in 1978 – the year of my Irish team interview - with best daily placings of fourth in the prologue and 8th and 10th on stages. I recall a Bennett funny during the Scottish Milk Race. (The Scottish Milk Marketing Board was a separate entity to the other one which is why Scots had their own stage race). Anyway, Bennett was riding like fury in a bid to regain the leaders after a mechanical. It was quite a ride along winding lanes and he was going full gas. As soon as he regained the group, he turned his head to the following press car, raised his arm and gave us the thumbs up. He had some good quips. Just before a stage start riders and officials were all milling by the food wagon. Bennett was helping himself to a banana and whatever else would fit into his jersey pockets for the stage when he noticed that I’d spotted a big box of tea bags. “I never take those,” he said. Playing the straight man, I said. Why ever not? “Because they never hand up hot water,” came his deadpan reply.

My excitement at seeing my first big bike race - the 1963 Milk Race

The 2021 Tour of Britain is due to start next week.(recent edition pictured below). It’s not coming my way this year, so I’ll get my fix by recalling my excitement at seeing my first Tour of Britain – the amatuer Milk Race - way back in 1963.

“From Me To You” by the Beatles topped the charts that year. Just one of the many chart toppers to set our feet tapping and pedals turning. We played this Beatles hit on the juke box at the Poplar Café while awaiting for the amateur Tour of Britain Milk Race to come by on the Warrington to Macclesfield road. It was the first stage of the 1963 Tour, from Blackpool to Nottingham. The first Tour of Britain was sponsored by the Daily Express in 1951, and was a huge draw, pulling tens of thousands of spectators. It was proof of the power of press sponsorship. The Milk Marketing Board took up sponsorship in 1958, after professional Dave Orford first put the idea to them. It was to become the longest running cycle racing sponsorship in the history of the British cycling. It came to an end in 1993 when the government killed off the MMB monopoly. Today, over 60 years later, the new-look Tour of Britain is the reincarnation of the Milk Race. It is promoted by marketing company Sweetspot and fields some of the best elite pros in the game, reflecting Britain’s new international standing at the top of world cycling. But in this story I go back six decades to when this novice club rider and his friends first saw the Tour – then called the Milk Race. This was in 1963. The sight of this international road race gave us hope for the sport. In those days, the general public didn’t know much about racing. The Poplar café was an essential watering hole for truck drivers and cyclists, the latter heading for the Derbyshire Peak District. Pint mug of tea, full breakfast and two slice, juke box offering a wide selection of the current hits, including Tamla Motown, the Beatles and Gerry and the Pacemakers. No lingering there on Milk Race day, mind. We finished up and went outside, took up position with a good view across the huge gyratory under construction there, with slip roads down to the new M6 motorway taking shape, carving a wide brown scar across farmland. The race was quite a spectacle for my young friends and me. All the race vehicles – Fords - were milk white, decked out with roof racks and boards carrying the legend, Milk Race. Team buses came through first. They were a far cry from today’s huge team buses. In fact, they were small vans full of team baggage. Some 20 minutes later the announcer’s car came through, telling us that Great Britain’s Peter Chisman was alone in the lead. Pulses quickened. There was a magic about place-to-place racing, anticipation of the approaching hustle and bussle of athletic action which would, for a moment, make the highway its own. A police car headed the cavalcade, followed by official race vehicles all in white, then the lead car, headlights blazing, red lights on the roof flashing and a big head board announcing “Cycle Race”. Then, there he was. Pete Chisman, a big guy, must have been over six feet tall. Neatly cropped fair hair, muscled legs. Powering into view, sweeping around the roundabout, past in a flash, commissaire’s car at his back wheel, then a service car, a few press cars. Gone, leaving papers dancing in the slipstream. There goes Chisman, with his escort clearing the way. To be waved through traffic lights, waved across roundabouts. Nothing must be allowed to impede his progress. Mind you, oncoming traffic could be a problem in those days. Several long minutes passed before the main field sped through accompanied by the hum of tubular tyres on tarmac, the blaze of colour, a sea of exotic foreign faces and sun tanned limbs – the Poles, the Czechs, the Dutch, the Irish – not so suntanned - the home men in GB colours or riding for the Regions. They had been held up for several minutes at the swing bridge on the Manchester Ship Canal which explained Chisman’s big lead. But that win was no fluke. He had finished 4th overall previously. In the 1963 edition he won a total of five stages, wearing the yellow jersey of race leader throughout. After they race had whizzed by we returned to the Poplar’s, for more tea, and to discuss what we had seen. What was it that had so raised our spirits? Was it because cyclists were considered second class citizens to other road users? That was it. Afterall, cycling was in decline in the Sixties, as more and more people aspired to owning cars. If you were on a bike it was because you couldn’t afford a car, was the general consensus. Cycling enthusiasts barely registered on ordinary people’s radar back then. Oh, big races like this would always impress. The casual bystander, the crowds at the finish showed that if put on a big race they soon cottoned on. But otherwise cycle racing hardly made the news. Except when the annual Milk Race made the road its own. Well, almost its own, they still had to contend with oncoming traffic which didn’t always stop. But generally, other road users gave way, for once. That’s what we young cyclists liked. For a few brief moments, respect for two wheels.