My Story – Living With and Recovering From Chronic Fatigue Syndrome

Having realised today was ME CFS awareness day, I felt inspired to share my experience of living with the condition, and letting other people know my story!

I am now fully recovered, and am happy to talk about what happened to me and my life as it is far enough in the past for me to look back on without being so strongly attached to it.  Please, if you know someone with the condition or are dealing with it yourself, continue reading, as my story hopefully offers a glimmer of hope!

It all began in 2007.  I was in year 9, at a school with a fantastic reputation – I was doing great, being a bit of a geek and at this point my teachers were hoping I would be looking at Oxford or Cambridge in the coming years.  I had a really nice set of friends and a very supportive family.  Everything was just fine.  My real passions in life were always art, music and drama: anything creative really!  From a very early age I had always been fascinated by Musical Theatre, and wanted to do everything – write a musical, perform etc.  I had the busiest lifestyle possible and crammed everything I possibly could into every day with afterschool activities – Piano lessons, Church Choir, spending far too long on any school project…!  I was burning the candle at both ends and I knew it: and I loved it!

Christmas 2007.  Everyone catches something in winter!  I got a chest infection.  The next week, it still wasn’t clearing up.  It felt like I had flu, but without the snot!  I fell asleep in a French lesson, having been a language geek.  I became out of character in terms of what I was able to achieve (or not achieve) at school and outside of school.  It got to a stage where walking down the road became so tiring that I began to feel sick and had to rest before returning home.  Every CFS/ME sufferer has a particular symptom that is triggered off when they become exhausted – for some it is muscle pain or severe migraines, but for me, I began to get a tight chest, like terrible indigestion, and eventually this would lead to me retching, hardly ever actually bringing anything up.  It was bizarre… and sorry to be graphic!

I could do nothing… My Mum was obviously extremely worried.  I had gone from a model student to my life being a mess, and all from a chest infection.  I can’t imagine how it must have felt for my family to look on from the outside.  I have blocked from my memory how it felt for me to face failing at even the simplest of tasks – going from a high-flyer aged 14, with the world as your oyster to being ‘ill’ with something that some of my peers thought was laziness.  A number of theories were developed by some of my peers as to how I had become so ill, none of which are at all appropriate to share online!  In any event, I did not know what was wrong with me, so after many visits to my local doctor, being fobbed off with one excuse or the other, I was told that I had depression and a fussing mother.  This is a regular misdiagnosis for CFS/ME sufferers, who are asked to fill in a questionnaire to judge depression:

Are you unhappy with your life? Yes, I am physically and mentally unable to do anything!

Do you feel tired for the majority of the time? Yes, I cannot sleep due to insomnia and cannot function fully during the day!

Of course, for a doctor this seems like an easy diagnosis.

But my Mum was not willing to give up and she knew it was something else.  Another Doctor saw that I may potentially have Marfan’s Syndrome (the most obvious symptom is elongated limbs – I had grown a foot over the course of a year, now standing at 6’ 6”!).  I was referred to a paediatrician, who was soon able to give us some information about CFS/ME.  When I read the symptoms, it was like I was reading about myself.  I was extremely lucky to have been referred to Great Ormond Street Hospital, where they have a specialist unit working with young people with the condition.  I am aware that many others don’t receive this sort of help and don’t necessarily manage to get such an early diagnosis (mine was within around 6 months of being very ill).  For others, this is absolutely tragic, and I hope the awareness day today has begun to make people consider the amount of support, research and funding that needs to be developed in our society.  I was also very lucky to find around me a number of family friends who had successful recovery stories, and people who ‘believed’ in the condition – it has only been officially acknowledged by the medical community for the last 15 years or so.

I will be eternally grateful to the team at Great Ormond Street Hospital (GOSH), who helped me get myself, my life and my family’s lives back on track.  I cannot begin to describe how they turned my life around, other than to say that in a nut shell, they helped me find a structure to my days, weeks and months.  The idea was to cut out ‘boom and bust’, where I had a few busy days when I felt well, inevitably followed by few days of feeling terrible and unable to live normally.  I cut down what I was trying to achieve, to find a baseline level of what my body could cope with, which normally included around half an hour school per day, odd afterschool activities such as piano lessons or Stagecoach to keep my spirits up, and 5 minute walks with my Dad in the evenings.  After I was able to achieve this basic level of existence for a few weeks consistently, without ‘boom and bust’, with the guidance of the hospital I added each element of my life back together very slowly, like a jigsaw puzzle.

From a keen student taking 13 GCSEs, I was forced to reduce to 5 – it was a horrible time, basically dropping one subject per week, as I worked to find my baseline of what I could achieve week by week without making myself ill.  With the help of my family, tutors and fantastic school, I left with 4 A*s and an A – GCSEs may seem so insignificant looking back, but it is still one of my proudest achievements to date.

It was during this time of recovery that my Mum came up with a crazy idea.  I really struggled to read or take information into my brain, but found there was much less mental processing involved in writing things myself.  I had begun writing a musical before I was ill, called ‘Wanted – The Legend of Robin Hood’ – it wasn’t very good but still my Mum thought what better idea than to have something positive to look forward to – let’s put it on a stage!  I continued to work on the music, lyrics and book, and we applied for funding and booked a local theatre for a week.  With a cast of my friends from Stagecoach, the show was presented at the Headgate theatre, Colchester to the very best of all our ability as a full scale production, lights, costumes, set – the lot!  With the help of many, many people, we managed to raise £4,000 for GOSH.  It will never be enough to pay them back for what they did for me, but it was certainly a start.  It was 2010 (3 years after my diagnosis) by the time the show was on, and I was almost fully recovered.

I was at Sixth Form College, and working on my AS and A-levels.  I was almost back to my previous self, but still had to be careful to monitor that I didn’t live in a cycle of ‘boom and bust’ as I had done in the early days of my illness.  I was extremely lucky to have had a very loyal set of friends at the time, most of whom I am still in touch with.  Many sufferers become so immobile that they lose friends, and frankly, it takes a caring person to look beyond someone who seems tired, who seems down (from a life that has fallen apart), and who can have bad days.  I was lucky to have a set of people who could do this but this is rare.  I made the active decision after my diagnosis that I would not get in touch with anyone else in my position, as it is possible to join internet forums or meet up with local people who you can share experiences with.  For me, I knew I had to look to the future, and sought to speak with people who had dealt with the illness and come out the other side.

The people I am most grateful for is my family.  My Mum, my Dad, my Grandad and my Nan were the most supportive people I could possibly imagine.  I can’t begin to understand how it felt for them to watch my decline or the compassion they showed me in helping me recover.  My Mum especially had to deal with me in the worst possible moments of the illness, when I was at a stage where my life did not seem worth living, and looking back it seems ridiculous that she, as my carer, didn’t receive every gift money could possibly buy to repay her for the support she gave me personally.  CFS/ME (as with other illnesses) does not just affect the one person who is diagnosed – the entire family suffers.  The entire family recovers along with your own journey back to health.

I am now about to turn 21.  I have been fully recovered for quite a few years now and only on rare occasions still get the tight indigestion and sickness after a very busy period – something I used to get on a daily basis.  There is always the risk of relapse, but I now have the tools necessary to know how to manage my body – I eat well, get enough sleep, and know when enough is enough.

The period of my life between ages 14 to 18 is a bit of a blur to be honest as I think I have tried to block the negative parts from my memory.  Although I feel as if I missed a huge chunk of my teenage life, I am strangely grateful for the experience.  I need to avoid getting all philosophical at this point… but it definitely taught me to appreciate what I have, made me really focus on what I want to get out of life and completely changed me as a person.

My life could not look more different from a few years ago.  I am about to graduate from PPA, a Musical Theatre College, having studied for 3 years, and am auditioning for jobs in the West End (fingers crossed!).  During my training I have spent all week with sometimes 12 hours a day of dance, acting and singing classes.  I currently have 3 jobs, all of which I love – I teach kids musical theatre on a Saturday, I play piano in a theatre foyer and I am working as Musical Director on one of our third year shows in college.  I used my height to my advantage and played ‘Little John’ in Pantomime at the Theatre Royal, Plymouth over Christmas.  I live with my girlfriend, who I met at college.  I have no idea what I’m doing with my life next year and I couldn’t be more excited!

…Six years ago, my life was almost not worth living.  To anyone who is suffering from this horrible condition, I want you to know there is definitely hope.  It currently affects 1 in 250 people in UK.  Research is still trying to unearth the cause and a cure but we are still fighting a battle against those who don’t believe this illness is real or fail to understand it.

This needs to change.

Thank you for taking the time to read my story – I hope it is inspiring and goes to show that anything is possible.

Edward Court

 

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