Our Journey with ME/CFS and the ME Diary………
In January 2003 I was involved in a work accident with a wood chipper that resulted in a partial amputation of two fingers on my right hand. This led to a significant life change and after taking time to heal I enrolled on a health based college course. The course eventually led me to university where I qualified as an Occupational Therapist in 2007. University had never been a considered option before the accident in 2003. I always look back on the accident as a positive life event and value the change in direction which occurred on that day.
Several years later I was working as an Occupational Therapist and became very unwell with a flu like illness. Many of the people I worked with also suffered from this flu. However, I was unable to recover. The symptoms of flu and exhaustion kept returning no matter what I did. I could not shake it off. This led to many days off work and many trips to see my General Practitioner.
At that stage I met my wife and everything seemed to be falling into place including a new job, working within a team of occupational therapists in a community mental health setting. My Wife has two beautiful daughters and as a family we moved to Northumberland.
Unfortunately the symptoms I experienced earlier in the year began to return at alarming frequency and it was not long before I was struggling to meet the demands at work. I was sleeping most weekends from increasing exhaustion and eventually crashed in November 2010.
I have not been able to return to work since. After many trips to my GP and various specialist consultants I was diagnosed with ME/CFS in 2011. It took approximately two years for a diagnosis and within that time I had not received any advice on managing the symptoms or reducing potential harm.
In September of 2011 we were fortunate to meet an IT specialist through a local ME/CFS support group. We soon realised we had much in common least of all the length of time to receive a diagnosis of ME/CFS and a lack of advice and treatment along the way. We embarked on a meeting of two worlds; that of technology and health.
It seemed obvious to us that monitoring activity, exhaustion and associated symptoms would help most people better manage this poorly understood condition and so the ME Diary Smart Phone App began development.
It was at this time that my eldest step-daughter started to miss some time off school due to ill-health. The cause was initially diagnosed as anaemia and Lyric received treatment for iron deficiency. Unfortunately several months after some success with treatment Lyric began to crash again. Lyric would spend about two weeks at school and then become very unwell; she would often need picking up from school. The situation continued like this for several months until Lyric was unable to get up to go into school.
Lyrics’ crash was very worrying for all of us. She was sleeping approximately 18 hours per day attributed to severe exhaustion. She described relentless headaches and joint pain, daily nausea and sensitivity to light and noise. Looking back these symptoms paint an obvious picture towards the collection of symptoms known as ME/CFS. However, at the time we were very unsure. Lyric was also having small episodes of what seemed like petit mal seizures. We required some expert advice and Lyrics’ general practitioner referred her to the local paediatrician consultant.
In the mean time I thought it might be helpful if Lyric monitors her current symptoms and the amount of time she was sleeping. Lyric owned a smart phone and agreed to download the development version of the ME Diary. I was able to chart Lyrics’ symptoms and activity from the ME Diary App.
Lyric was diagnosed with ME/CFS on her second visit to the consultants’ office. Such a quick diagnosis is often unheard of when dealing with this under-researched condition. One of the main reasons detailed in the consultants report was the fact that Lyric had monitored her symptoms for a moderate period of time.
I would encourage all those who suspect the condition ME/CFS to monitor there symptoms and activity levels prior to any specialist or GP appointments.
The diagnosis of an illness is very important in terms of support. Lyric has received some excellent support from her school. She has a timetable that reflects energy conservation and is driven directly to and from school by a taxi service. There are limited treatment options for those with ME/CFS.
However, quick diagnosis and harm reduction advice is paramount in preventing this condition turning from mild to severe ME/CFS.
Looking back, the accident in 2003 seems like a breeze to cope with compared to living with a chronic health condition. Although most days I try to wish the condition away I could not deny the lessons I have been taught on this journey.
Having two people in a family with a severe disability is challenging for any family.
Lyric has shown a deep resilience to losing a vast amount of her function and quality of life. I have never heard Lyric complain and feel privileged to know such a young character with such a pleasant unaffected disposition.
Lyric’s mum and I are very proud of Lyric and as a family. I am very privileged to have met other ME/CFS suffers on my recovery journey. These people show me the courage to continue in my journey with acceptance and direction. Let it continue to be full of additional discoveries and health improvements.
We are also grateful as a family that we have the opportunity to work on an application that may help many others with this deliberating condition. The ME/CFS Diary is helping us manage our condition, so we can enjoy a meaningful life together.
Please send our team your stories of ME/CFS, we would be honoured to share them on this website.
Sharing strength and hope as we live our lives through difficult times.