Dream cruise tore my family apart says woman who suffered from seasickness for FOUR years
Mother has now set up a series of dating websites for those stigmatised due to having a medical condition or coping with difficult circumstances
17:35 GMT, 22 March 2012
A woman who has suffered from seasickness for more than four years has told how a dream holiday cruise tore her family apart.
Michele-Marie Roberts boarded a cruise ship in December 2007 for what was meant to be a bliss-filled break with her husband and two children.
But four-and-a-half years on a rare and debilitating condition called Mal de Debarquement Syndrome has resulted in Michele-Marie's happy home life being ripped apart.
Devastated: Michele-Marie Roberts developed a rare condition after a cruise that left her feeling dizzy and seasick
Now single, the mother-of-two has been forced to give up looking after her autistic sons, cannot hold down a job and has split from her husband of eleven years.
Mal de Debarquement Syndrome (MdDS) is a rare condition that usually occurs after a cruise, flight or other event involving sustained motion.
The phrase “mal de debarquement” is French for “disembarkation sickness” and the illness leaves sufferers feeling queasy, dizzy and disorientated – as if they are seasick.
Fewer than 100 cases have been reported in medical literature and the condition is thought to be a neurological syndrome for which there is no cause or cure.
EXPLAINING THE 'SEA-SICKNESS' CONDITION
Dr Yoon-Hee Cha, a professor at the University of California in Los Angeles, is an expert on the condition.
Dr Cha said: 'Mal de debarquement syndrome (MdDS) is an under-recognised disorder of motion perception that occurs after exposure to passive motion such as from a cruise, airplane or even land travel.
'Patients usually describe the sensation as a rocking, bobbing, or swaying as if they were still on the boat or other vessel that caused the symptoms.
'A hallmark feature is the temporary symptomatic improvement of the rocking sensation when the patient is passively moved again, notably when they are driving. The worst situations are usually when they are standing still or coming to a stop after either passively or actively moving.
'Associated symptoms include intolerance to visual motion or visually complex environments, excessive fatigue, poor attention, and anxiety. Many patients are unable to work because of unrelenting symptoms though they look physically normal to their physicians.
'The disorder seems to represent an abnormality in the function of the brain or brainstem. Currently, we do not know where the abnormality is, but ongoing functional neuroimaging studies may ultimately answer this question.
'There is no cure for the disorder, which is often devastating to the patients who are usually in the prime of their lives. Long acting benzodiazepines, antidepressants, and stress relieving techniques may help.'
Michele-Marie, 51, said: 'I had been on several cruises before and it had always taken me a bit longer than everyone else to get my 'land legs' back.
'But this time, I knew straightaway that something was different. As I was getting off the boat, I nearly collapsed. It felt like I had been hit by a brick wall.
'I felt like I was being pulled and pushed simultaneously and that I was walking on a trampoline.
'The funny thing was that while we were on the boat, whenever there had been a rough passage, I had been bolt upright while other people were swaying all over the corridors.'
The holiday had meant to be a relaxing break for Michele-Marie, from Ascot, Berkshire, and her then husband, plus the couple's two sons Calum, 15, and Corey, 10.
With both boys being profoundly autistic, the Roberts family found the occasional cruise holiday to be the perfect respite.
Michele-Marie had married her husband aboard a cruise to the Caribbean island of St. Thomas in 1998 and ever since then had fallen in love with cruise breaks.
But when she boarded the boat to Hawaii from Los Angeles in December 2007 as a healthy 47-year-old housewife she had no idea how her life was about to change.
Within hours of disembarking and flying back to London, Michele-Marie had passed out in her kitchen.
At hospital, due to her collection of unusual symptoms, doctors began testing for Meniere's disease, labyrinthitis, vertigo, brain tumours and even multiple sclerosis.
Meanwhile, Michele-Marie continued to suffer the life-altering consequences of her condition.
She said: 'I can only describe it like
coming off the Waltzer at a funfair – when you are all disorientated and
can't walk in a straight line – except all the time.
'The only time I ever get a respite from it is when I close my eyes and go to sleep at night or, unusually, when I am driving or in motion.
'When it first started, I was stumbling about and slurring my words, I looked like I was inebriated and people often thought I had been drinking.
'Once I was in House of Fraser and a shop assistant saw me and said: 'Methinks madam needs to take more water with it.'
'I didn't dignify it with a response but it really hurt me and upset me because there was nothing I could do about it.'
Michele-Marie had enjoyed going on cruises but now feels like she has just come off a funfair ride
Eventually Michele-Marie looked up her symptoms online and suggested to her doctor that she might be suffering from MdDS. She was officially diagnosed in June 2008.
Through a support group Michele-Marie was able to get in touch with fellow MdDS sufferers and discovered that regular exercise gave her some relief from her symptoms.
However, by this time she had been unable to act as her sons' full-time carer for several months and her husband had been forced to run his business from home in order to look after the boys and his wife.
The strain on their relationship was plain and in February 2009 the couple separated, divorcing later that year.
For practical reasons, the couple initially decided their older son Calum would live with Michele-Marie while the younger boy, Corey, whose autistic needs were greater, would live with his father.
But before long it became apparent that the two boys missed each other two much and Michele-Marie was left with no choice but to allow Calum to also live with his father.
Alone, living in social housing and
with no work prospects, Michele-Marie's life had been irrevocably
changed by her constant seasickness.
said: 'MdDS has altered my life out of all recognition. I went from
being a woman whose sole purpose of being was caring for her family, to a
woman who now had to live on her own – something I had never done in my
life – with an illness I still didn't understand, and facing the
prospect of having to go back into the commercial workplace after
sixteen years absence.
is non-verbal and Calum is his interpreter. It just wasn't right to
separate them but at the time we thought we were doing the best thing
'I miss them all the time but I see them during the week and at weekends.
my umpteenth job rejection, I sat down and took stock of where I was,
what I knew and what I had personal experience of and decided to use
that combined expertise to dictate my own destiny instead of waiting for
more people to say, 'Mal de what'.'
Michele-Marie pictured with son Corey (l) and Calum who both have autism. The stress from her condition led to her divorce
Since divorcing, Michele-Marie had tried internet dating but had found it to be a disappointing experience.
With an ex-husband, a long-term incurable illness and two autistic sons she often found the men she met on dating sites were simply on another wavelength from herself.
She said: 'I went on the internet expecting to find a dating site that would facilitate my situation and found absolutely nothing.
'The more I thought about it, the more I began to passionately believe that I couldn't be the only person in this position.'
As a result, Michele-Marie set up Wavelength Dating, a collection of six matchmaking websites aimed at people with individual and often stigmatised dating needs.
The sites cater for single parents of children with special needs, those who have been affected by betrayal, the bereaved, carers, people with OCD and related conditions and people suffering from shyness and social anxiety.
Michele-Marie said: 'I couldn't find a job and I had become completely disillusioned with the whole internet dating scene so in the end I decided to kill two birds with one stone.
'Wavelength Dating is a unique service which I have designed to take the stigma out of broaching a difficult subject, and a dating environment where people will be less prone to judge your circumstances, because theirs are similar.'
Michele-Marie still suffers from MdDS and there is no treatment for her condition. However, her new business project has given her hope for the future and the belief that the right man is out there for her.
She said: 'If my life had been simple, things would have turned out very differently.
'It's going to take a very special person to understand my situation and for me to want to share my life with them, but hopefully I am a step closer to finding him.'
For more information please visit www.wavelengthdating.com