He wakes up in pain in the middle of the night, gets up to vomit, and thinks, “Oh no, not again”. He puts on a brave face and is dreading the next three days because that is how long, once again, this episode will last.
He gears himself up for thirty-six hours of intense stomach pain, knowing that there is no painkiller that will give him relief. I place a bucket next to him and every fifteen minutes he drags himself up to vomit in it. I wish I could take his pain, but I cannot do anything except hold back my tears. He has a lot on his plate and his GCSE exams are just around the corner. He struggles to carry on but he does not give up hope.
Three days and three kilos lighter, he is exhausted but relieved that this episode is over. He bounces back and, for the next seven weeks, starts life again until the next occurrence.
It has been five years since we first went to the GP asking for help. He has been put through an extensive series of investigations; blood tests, ultrasounds, endoscopies, MRI, brain scan, a barium swallow. None of these offered us a diagnosis. Months of research on the Internet finally led us to a charity called CVSA UK. After speaking to CVSA, we can finally see faint light at the end of the tunnel. We meet one of the charities’ medical advisors, Dr. Sonny Chong and have a diagnosis - Cyclical Vomiting Syndrome.
What is CVS?
CVS is characterised by recurrent, prolonged attacks of severe vomiting, nausea, lethargy and pain.
It is a rare disorder and can take up to five years to diagnose. There are no diagnostic tests, therefore it is identified through a process of elimination.
It can effect anybody of any age. Onset can be in infancy, childhood or adulthood.
CVS causes the sufferer to have intense nausea, and vomit uncontrollably at frequent intervals, up to six times an hour, for periods ranging from hours, days, or in extreme cases, weeks.
The stomach pain can be accompanied by dizziness and headaches.
The frequency of attacks varies from person to person and can range from only four times a year to weekly episodes.
It is an invisible disorder that disrupts life; it can torture and control you. CVS may stay with you for the rest of your life, it may be managed with medicines, or you might grow out of it.
The condition does not allow some sufferers to hold a steady job, it can disrupt school and university work, and make planning for a social life difficult.
It is a disability that needs to be recognised as such.
The Cyclical Vomiting Syndrome Association U.K. is a registered charity. It promotes awareness, education and research on CVS and supporting sufferers and their families. It is an entirely volunteer run organisation, charity registration number 1045723. www.cvsa.org.uk
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