My name is Olivia Cole, I am eighteen years old and have been a sufferer of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E/CFS) for eight years now.

I was a completely normal and healthy little girl up until I went to a friends birthday sleepover. That night, I went to sleep healthy and woke up the next morning extremely unwell. After weeks of resting and endless visits back and forth to the doctors, my health was deteriorating more and more with each passing day. I was constantly told that I had tonsillitis and post viral syndrome- the only problem being that I was never waking up in the mornings and feeling any better than I did the day before. 

After all of the back and forth trips to the doctors and a lot of stress, I was eventually referred to a children’s specialist where my mum presented her Google findings of Chronic Fatigue Syndrome to the doctor who then referred me to Great Ormond Street Hospital- where at the age of twelve I was diagnosed with M.E, two years after becoming unwell.

Durning this lengthy two years, I was also having to attend school whilst feeling debilitatingly ill everyday. Not having a diagnosis during the first two years meant not only that my family and I didn’t know what was wrong with me, but my school seemed to think that they had no reason to believe just how unwell I was.

After a while I was no longer allowed to be off school and was made to attend even on days when it was physically impossible. My mum would get me dressed in the morning, do my hair and literally carry me to the car. I knew that as soon as I was through the school doors that would be it- I was stuck there until the school bell rang or my two hour timetable was up. Somedays I was put at my desk and my teacher would seem to just try and ignore me for as long as possible. 

Break time was my chance to try and go to first aid to see if anyone could help me by calling my mum so I could go home to bed, but even then the ladies had been pre-warned by teachers that I wasn't allowed to leave. So again I was left sitting there, feeling awfully unwell until break time was over and it was then time for them to send me back to my class.

At this time I was only ten years old and I had nobody other than my family to turn to. The sad truth is that if I were sent home to rest back when I was a little girl, my health could be far better now.

With M.E, you have to listen to your body and do exactly what it is telling you in order to even try and start feeling better. Rest doesn't help or leave you feeling refreshed at all but it can relieve some of the pressure on your muscles. Either way, you need rest otherwise your body completely burns itself out of the little energy that you do have and this can lead to your health deteriorating even more.

Sometimes my whole body would completely freeze not only from exhaustion but also the fear of knowing how unwell I felt to be sitting in school for so much longer than my ill health could take. To teachers this was a sign of weakness, so for this I would be given looks and made to feel unbelievably small and worthless next to the rest of my classmates. 

If I was taken seriously I could have achieved a lot more in my eighteen years and been a far more confident person. Teachers are supposed to look after and do what's best for their pupils but unfortunately I never got to experience that, all because I was simply unwell but looked fine to them.

This went on until I was finally able to leave school at the age of sixteen.

You would think that this would have changed after being given a diagnosis from Great Ormond Street Hospital, but unfortunately I still wasn’t believed. This is where CFS Selfies came to light and the idea came to mind. I had to make it to a lesson that my school had set up for me at my local library. I woke up feeling terrible and looked in the mirror to see a swollen face that looked just as terrible as I felt. So I took a photo of myself before and after I had applied makeup. It made me realise just how much I paint my mask on and apply a smile to go out and face the world, because unfortunately with M.E that can sometimes be easier than having to try to explain your situation to people who know nothing about what you’re going through and do not seem to want to understand it.

That's when I realised that this needs to change and in order to try and make people have a little more understanding of what we have to go through everyday, we should show them first hand! So CFS Selfies was born: a place where sufferers (including myself) could meet others who feel exactly the same as them and talk all things health.

I can safely say that throughout this whole eight years all I have wished for is my health- you truly realise that nothing else matters when it has been taken from you. When your health deteriorates your old life can get taken and replaced with a whole new one, it's not a fun or exciting one by all means but it's a life where you have to find yourself and find the little things that you love in every day and in what the world has to offer.

I went from being a ten year old girl with lots of energy to an eighteen year old whose muscles shake when trying to lift my arm. I am now though nowhere near as unwell as I used to be and this is all the hope I need to know that one day soon I'll be able to fulfil my dreams.

It’s extremely unfortunate that I had such a bad experience with not being believed in my younger years at school but I am extremely lucky to have such a supportive family who have helped me through it. Not being believed took away my childhood and teenage voice but that is no more.

If you’re reading this and going through a hard time with being ill, then please just remember that you’re never alone. M.E can be one hard battle but in the end the warriors always win. Show this website to the people who still struggle to understand and I hope it can help make your time with M.E a little easier, just like it has mine. 

Let's get the word out there...

Olivia Cole 

My main M.E symptoms include - 

Fatigue Pure exhaustion

Heavy muscles - Like your muscles have been replaced with sandbags

Colours in my eyes and brain fog - Even on my better days I never see the world clearly due to colours flying around my vision and my brain being totally replaced with fog. This leaves me unable to think clearly, unable to take in what people are saying to me and often forgetting what I had just done a minute ago.

Swollen face 

Hair loss 

Heavy head and neck - Which I’m sure most people may remember me describing as a ‘bowling ball head’ by the pure weight that my head seems to put on my neck and shoulders. 

Food intolerances 

Insomnia - Even though I feel completely exhausted I can never sleep and the worse I am feeling the worse my insomnia gets. Even sleeping tablets haven’t helped with my inability to be able to sleep.

Painful joints - That often leave me under an electric blanket trying to make the pain ease as much as possible.

There are hundreds more big and small symptoms but it’s impossible to list them all without this list being a good mile long.