Femme se Fatigue – Pictures in an Exposition
By Manuela Manuel
Its 4.30am on Saturday, November 19 – no need for the two alarms I set 6 hours ago.
My mind has conducted a running commentary all night, justifying reasons for not travelling to London today. During the hours ahead many memories will surface. Not all will be welcomed.
Fourteen years have passed since I last strolled through Bloomsbury. I loved my varied career, initially at Central St Martins College of Art and Design, Bloomsbury and later in the Academic Department of the University of the Arts London, Mayfair. Central St Martins College of Art & Design… So enough reason to make the journey, except that today for me, it is all about MPN/ET together with it’s secondary conditions Pulmonary Embolism (PE) and Erythromelalgia (EM).
My home is about a mile away from the ancient fishing port of Brixham,Devon. It sits on the boundary of a hillside farm, high above the quaint old town and, on a clear day, I can see the Jurassic coast of Lyme Bayand the Bill of Portland where colliding currents create turbulent seas. This morning, it is still dark but the lights on the fish quay are bright and the deep-sea trawlers are unloading their catches. Their skippers will be hoping for good prices at auction, the dealers and fishmongers exchange raucous banter and bid cautiously, the truck drivers wait to load whatever the celebrity chefs will be preparing in London restaurant kitchens at lunchtime – this is their daily routine. It’s a 14 mile drive to Newton Abbot where I will board the 06.02 Penzance to Paddington Express. The roads are deserted and I recall ……
…… life was indeed good and exciting at the start of 1997. I took so much for granted and even claimed to enjoy the 4 hour daily commute intoLondonwhen regular passengers, by force of habit, sat in their ‘usual’ seats, nodded greetings to their familiar fellow passengers and then became engrossed in the morning newspapers – quiet, stress free times – that’s my recollection. But this contented way of life ended without warning, as good times do, one afternoon in an Oxford hospital when I came round after spinal surgery and found I couldn’t move my leg and foot. The recovery process was long and frustrating, made worse by my refusal to accept that life as I knew it was indeed over, a 35 year career in London at an end and retirement loomed, of a different kind than planned and envisaged.
Headlights and the hissing of airbrakes end my reverie as a fish-laden refrigerated juggernaut slows behind me.
I settle in the ‘quiet carriage’ and am spared the throbbing bass notes emanating from IPods and the freely shared one-sided conversations on the now obligatory IPhones. The train speeds through Devon, Somerset, Dorset, Hampshire andBerkshire. The scenery is spectacular, recently tilled fields of red soil and rolling green hills dotted with sheep and cattle but this morning it is still dark, there is nothing to view and admire. The journey seems endless. The carriage is cold and there is a long queue for coffee in the buffet car. Dawn breaks as we reach Reading (junction for trains to London’s Heathrow and GatwickAirports). In 40 minutes I will reach the Metropolis.
There is meaningless graffiti on the walls of the decaying buildings which border the track just outside Paddington. I feel threatened and vulnerable, although I cannot explain why. London terminus for the South West, the station building dates from 1854 and was designed by Isambard Kingdom Brunel, one of my heroes – I know history portrays him as arrogant, driven to achieve greatness and lacking in the spirit of human kindness – perhaps history maligns. The clear-glazed, wrought iron arches of the vaulted roof bear testimony to IKB’s magnificent feats of engineering in the Edwardian era. I wonder how many of my fellow passengers will gaze above and marvel, but suspect the Golden Arches of McDonalds will be of more interest.
The London Underground beckons – quicker than getting a cab, that’s the theory until I reach the Circle Line platform and find there are no trains running eastwards to Kings Cross. Retracing my steps to get to the Bakerloo Line will add 15 minutes to my journey as I painstakingly limp up yet another flight of stairs. By now the conference will have started. Fatigue has taken over and I’ve missed ‘What are MPDs and why do people get them?’ by Prof Tony Green, Addenbrooke’s Hospital,Cambridge and also ‘Current treatment – ET/PV by Dr Steven Knapper, University Hospital of Wales, Cardiff.
I reach the auditorium of the Brunei Gallery, School of Oriental and African Studies and take a seat near the back of the hall, lung pain, shortness of breath and a dull headache jostle for attention as Prof Jean Jacques Kiladjian, St Louis Hospital, Paris, takes the stand. He has to leave early and romps through the list of new drugs – some so new they have yet to acquire names. Nothing registers – I figure any new drug has a long way to go before it appears on the list of licenced drugs for the majority of us. There is polite applause as he exits right with his briefcase and bids Dr Claire Harrison farewell.
The morning programme is running late as Dr Nauman Butt, Arrowe Park Hospital, Wirral, begins his talk ‘Current treatment – MF’. I scan the audience, some are diligently taking notes – I guess they have a personal interest in MF. Others appear to be listening with interest and a few may be dozing – but, if roused, will probably say that they’re better able to concentrate with their eyes shut. I should be listening to this given the suggestion that my experiences and test results, over the past 12 months, may indicate progression to MF. I haven’t raised this with the haematologist yet and am psychologically unwilling to seriously consider the possibility.
It is 11.10. The Chair announces that the planned Panel Discussion will now not take place and coffee awaits. As the 180 or so delegates make their way out of the auditorium I fail to recognise any familiar faces and can’t even spot anyone ‘carrying a red folder …..’ so it is good to meet Mike Isaacs. I want to ask after pretty Ellie, his adorable granddaughter, change the all encompassing MPD conversation but the session resumes and I take my seat.
The slide on the screen is of The Mayo Clinic, Arizona, Dr Ruben Mesa’s desert location, as he takes the stand. We’re all familiar with his many published papers and his easy to assimilate YouTube videos which, over the years, have probably provided more information and reassurance than that available from the clinicians we regularly consult. Today he deals with ‘Symptoms – how do we measure them and what to do about them’ and the impact of therapy, using works of art (suggested by his sister) by way of illustration. For quite some time I’ve felt that, when listing the symptoms I have, doubt is apparent as to whether or not these are ET symptoms or more likely attributable to the plethora of other conditions that can afflict the body. I am now unwilling to accept yet more referral to specialists in other fields on the grounds that ‘we’re erring on the side of caution’ or ‘just to exclude from the equation.”
Here, straight from the expert, comes confirmation that bone pain, weight loss, fatigue, night sweats and pruritis are ET symptoms, while microvascular risks are: Erythromelalgia, blood clots, headaches, abdominal pain and nausea. On the screen appears Picasso’s ‘Femme Ivre se Fatigue’ 1902 and she does indeed look fatigued – Dr Mesa chuckles, asks that the audience grant him some licence – she is in fact an absinthe addict. A little later and on screen comes Frida Kohlo’s self-portrait ‘The broken column’ painted in 1944, some six years after she was so badly injured in a vehicle crash.The painting screams pain and despair
There are 4 patient contributors. The first is enthusiastically cycling his way through the fatigue barrier, the 2nd speaks of his stem cell transplant, the lengthy recovery times and the affect on his job and personal relationships. The mother of a patient, first diagnosed at 8 yoa, describes the difficult diagnosis process – there is so little known about MPDs in young children. She speaks of her son’s achievements over the years and the problems experienced by the family. And lastly, a patient who sought help during a period of low mood and loss of confidence, who endorses the help and advice received from Dr Nicky Thomas and her colleagues in the GSTT clinical psychology unit. Claire Harrison is now referring all her newly-diagnosed MPD patients to this unit for ongoing support.
Prof. Tiziano Barbui, Bergamo Italy, is the final speaker of the day. His topic: ‘Why do MPDs cause blood clots’. During the break for lunch I take the opportunity to briefly ask the questions which have arisen since August when I was diagnosed with bilateral Pulmonary Embolism. He listens, answers and I thank him – I’m grateful.
Half way through the Discussion Group period, I realise that the majority will not get responses as the fortunate few ask further follow-up questions based on responses to follow-up questions. Some questions are directly pertinent while others ……. are we still unclear about the ‘Disorder’ and ’Neoplasm’ classification?
Within the confines of the Brunei Gallery, pain and discomfort take over. I find it impossible to use distraction while in the company of strangers, albeit strangers with a common bond.
Outside, as dusk falls, I’m drawn towards Russell Square. The paths are carpeted with russet leaves. I sit on a bench and my foot protests against its prolonged incarceration. I will the symptoms of EM to recede. This has been my first journey on public transport since PE was diagnosed. The SOS Talisman bracelet adorns my wrist, reluctantly acquired and even more reluctantly worn – but I now accept the need for carrying on one’s person vital information in case of emergency.
When did life cease to be my own? 1997 when paralysis and disability deprived me of my hitherto fiercely protected independence or 2005 when, unheralded, MPD claimed squatter’s rights?
I resume my walk and pass the British Museum – it was here that I spent many week-end hours with fellow mature students attempting to transcribe ancient hieroglyphs on the Rosetta Stone, statues and stelae under the supervision of a brusque Egyptology professor who was less than impressed with our efforts much to the amusement of the young Japanese tourists who gathered around us. I confess to having retained nothing of what I studied with such intense interest for two years, except that I can still write my initials: two very stylised owls.
Determined to win the battle over mind, backache, headache, lung pain, shortness of breath and a burning foot, I continue to walk towards St Giles and Marylebone. The streets are crowded with bustling Christmas shoppers, their way impeded by the less-abled, including me. I reach Oxford Circus, my determination crumbles and I hail a cab.
On the train, the MPD delegates’ folder and Lori Smith’s A walk with Jane Austen lie abandoned on the table which separates me from the two seats opposite. The platform barriers noisily close and the Paddington to Penzance Express slowly moves out of Brunel’s magnificent ‘shed’. I’m relieved to be going home.
Just a few days ago, at the final session of an Expert Patient Program course(www. patienteducation.stanford.edu/programs/) which I had been facilitating, a participant likened her diagnosis of a long-term condition to bereavement. She sought counselling as she grieved for the loss of the life she had enjoyed. At the time, I did not appreciate what she meant. Today, perhaps I do.
The passenger opposite writes postcards, meticulously ticking off names and addresses on a printed list. As the train passes through Tiverton Parkway, she gathers up her papers and looks across at me – kind eyes and a gentle smile. She’s been to the theatre, a treat on a rare and welcome day of respite. She tells me her husband is recovering from a stroke and she is his carer. ‘Are you a Jane Austen fan‘, she asks and laughs when I say ‘only since I saw Colin Firth emerging from the pond’. She says ‘you look very tired’ (‘Femme Ivre se Fatigue’ flashes before my eyes) and expresses the hope that I am not travelling to the end of the line. Penzance is a further 2 hours distant.
She gather up her bags as the train enters Exeter St Davids station and wishes me a safe onward journey. She looks back and smiles at me from the platform. The comfort of strangers.
Low mood has lifted a little. The positive aspects of the day filter through . Fourteen years ago, I learnt to walk again – not the energetic, long strides with which I’d previously covered miles – but initially slower, more hesitant steps, limited distances, confidence and patience sorely tried. Since then, I’ve walked on the Great Wall, the ice-flows of Antarctica and around the ancient ruins of Machu Picchu. Goals sets and goals achieved. MPN/ET/PE and EM are but other obstacles along life’s path. Today, despite weariness, a small percentage of my once unshakeable confidence has been restored – there will be new goals to set and, hopefully, achieve.
With the 2011 Christmas Lights of Oxford Street, I send festive greetings, love and good wishes for improved health, peace and contentment in 2012 to all in our MPN family.
Take me back to the Contents
© Manuel Manuel and MPNforum.com, 2011. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Manuel Manuel and MPNforum.com with appropriate and specific direction to the original content.