I am a mother of a son who has had Myalgic Encephalomyletis (M.E.) for the past 12 years. He is now 32 years of age. We live in Northern Ireland.
The Early Years – Pre-M.E.
My son had a fairly normal childhood, a bit more accident-prone than most children perhaps. When he was at school, we used to joke about which bit of his body would come home with a dampened ‘blue paper’ towel on it each day – due to the latest injury?! I swore it was just to get some attention from the school nurse, as he missed his mum (who was and still is a nurse). However, none of this stopped him from engaging in sporting activities both in and out of school – rugby and Tae Kwon Do, being an active member of the scouts and competing for his Duke of Edinburgh Awards.
He was strong academically too, and following a bit of change of heart in his last year at school and attending Belfast Metropolitan College to complete his chosen A- Level subjects, he was accepted by Glasgow University to study Psychology. He loved University and the outlets that gave him to question everything in politics, society, the world and the universe. He had a girlfriend and a good network of friends in Glasgow. He was in good health and enjoying life. In his second year of study – he had the opportunity to travel to Israel and Palestine with a group of like-minded students who were interested in exploring a more peaceful resolution to conflict in other countries.
First Signs of M.E.
It all began following that trip to Israel in his 2nd year at University; he was aged 20 at the time. He returned after 2 weeks feeling tired – but he had done a lot of travelling, talking early morning engagements, meeting other groups of students and adults with similar interests – so it was understandable he was tired. Two weeks later he was still feeling tired – more exhaustion now, but believed it would pass. Another few weeks went by and he felt worse – he could not keep up with his university work, was missing classes and assignment dates, and found it difficult to concentrate. So he saw a local GP at the University who examined him and arranged for a range of blood tests. Everything returned normal, except how he felt. Due home for the Christmas break, I arranged a visit to our own GP. Again she examined him and did some further blood tests – which again returned normal. Thankfully this GP was familiar with and had a special interest in, Post Viral Fatigue/Syndrome and Chronic Fatigue Syndrome. She diagnosed my son with Post Viral Fatigue initially - changed after 4-6 months to Chronic Fatigue Syndrome.
Giving Up On Cherished Dreams
He had to leave Uni half-way through his 2nd year and move permanently back home. He has not been able to complete his Psychology degree - despite his passion, desire and several attempts through Open University in the years since! He is physically unable to work, and although would love to do some voluntary work, fears letting people down, so has not pursued this. Most days he spends sleeping and when awake is often too tired to spend long out of bed. On a rare day he might manage a whole day awake, some time out of bed, a little walk. He has stopped engaging with social media, friends are few, but he has the love and strength of his family, and dog, around him.
Symptoms of M.E.
He has 'brain-fog', poor memory and concentration, Post Exertional Malaise, unrefreshed sleep, daily extreme fatigue, abnormal temperature regulation, muscle fatigue, low and social anxiety issues, disturbed sleep pattern. Many of the symptoms of Myalgic Encephalomyelitis (M.E.). Often he has to be reminded to wash and eat, and certainly could not live alone or support himself. He has been back home living with us for the last 12 years.
Searching for Solutions
He has been seen by 3 Private Consultants over the years, and diagnosed with M.E. - none specialised in M.E. as there was, and still is, no such service here in Northern Ireland - at best they had a 'special interest' in M.E..
He has been on various medications and anti-depressants over the years, and has had numerous tests and investigations - some suggested by himself or by me, often following reading some world-wide research article. There have been varying degrees of usefulness with some of these medications. But there is no cure! He has been seen by various Doctors, Psychologists, Physiotherapists, Social Workers, OT's, and Counsellors. In the early days, he was advised by a medical consultants that it was a problem in his head with his attitude to sleep – told to set alarms, and we as his parents, were told to ‘force’ him out of bed!
He was referred for Cognitive Behavioural Therapy (CBT).
He was referred to the local leisure centre to engage in an exercise programme – by people who had no idea what M.E. was, or of the risks of exercise in making the condition worse. In relation to sympathetic Doctors and other Healthcare professionals - he has met a few – the two main GPs he has been attending over the last 12 years are, but admit that they do not know a lot about M.E. or how to manage it.
The Parental Toll
As parents, we have been on an emotional roller coaster with his diagnosis - ranging from disbelief, to empathy, to anger, sadness, despair, and everything else in between! At times we even thought that a diagnosis of cancer or something else that people actually believed in, would have been better than something you feel you constantly have to justify and fight to be believed across society!
A Life Lost
M.E. has robbed our son of his 20's, and looks like it will continue to rob him of his 30's and beyond!
M.E. has robbed him of his 3rd level education and potential career, his income and job security.
M.E. has robbed him of his friends, relationships, a partnership.
M.E. has robbed him of many personal and family occasions and celebrations.
M.E. has robbed him of the life he believed he would have had.
M.E. has robbed us of the life we thought our son should have had.
Hope
However, he is not angry, and remains hopeful that some day, a cure for his condition will be found. We also hang on to this hope for a better future.
There is some support, help and hope out there that we have all found to be of benefit through:-
the work of the charity and support group: Hope 4 ME & Fibromyalgia NI
the symptom tracking app from the company TIYGA
One form of support and information can lead to another, and through the Hope 4 ME & Fibromyalgia NI charity, my son heard about the company TIYGA and the app they were producing. Later, he became a ‘beta user’ and he inspired and trialed the Fatigue or M.E. and anxiety profile.