Severe ME Awareness Week 2021: How I feel … I’m Tired 

August 3, 2021

Olivia (15) has kindly provided an account of her experiences after contracting Glandular Fever in 2018 and about having severe ME symptoms. We are extremely grateful to her for sharing her story to raise awareness about severe ME.

Olivia writes in her own words

In September 2018 I came down with glandular fever, I felt tired and had a sore throat, a fever and a cough.  I was 12 years old and attended full time education in a mainstream school. 

My GP told me I would get better and I should sleep it off and take paracetamol.  But over the next few months my symptoms grew to include loss of appetite, muscle pain, headaches and dizziness.  The sore throat went but the tiredness got worse, and by the end of the year I was spending all my time in bed mostly asleep and leaving the house only in a wheelchair. My sleep wake pattern was reversed, and I slept all day and was awake all night  

I was doing Karate, but now even going to the toilet left me exhausted.  I couldn’t figure out what was happening. One day my mother took me clothes shopping.  The next day I became dizzy and weak and for the next several days I didn’t move out of my bed or eat anything. 

I visited the local hospital and saw general paediatric doctor who listened to my ongoing problems.  I had lost significant weight and my appetite had not returned.  I was severely tired all the time and couldn’t even hold a conversation or listen.  The doctor informed me and my mum that I was suffering with Post Viral Fatigue (PVF) and she said I would recover.  Blood tests were done and my tummy was felt. 

Olivia, a talented artist, has drawn pictures showing snapshots of her life with ME/CFS.

Over the next year, I saw dozens of doctors, who prescribed a range of treatments.  I was hospitalised for several weeks for observations and during that time I was diagnosed with Influenza A.  My Mum and I both suffering were put into isolation for 14 days.   Due to my weight loss and my appetite still not returning a nasogastric (NG) feeding tube was inserted.  This experience itself was horrible.  The tube made my throat sore and dry and every time the nurses fed me with Fortisips my tummy was in knots. The pain was unbearable.  The NG tube was taken out. I had gained a slight amount of weight.  I was sent home.  

Again, at home, I was in bed 99% of my time.  Spending most of the time asleep or laid in a dark quiet room.  Sometimes on the internet or watching tv.  The smallest movement left me exhausted.  I was forced to attend dozens of exhausting appointments with different departments of the hospital.  No one could understand why I was feeling this way.  It was said that I had ME/CFS by the pain clinic.  I attended that clinic with hope of help.  I was discharged with little help.  My mother pushed or “paced” me as told by the CFS doctor and even though I am tired I try.  

In September 2019 I started home education.  It tires me out. 

I play on my PlayStation or Nintendo switch, it tires me out. 

I sit on the sofa and talk with family or sit and watch tv, it tires me out. 

I eat, it tires me out.  

All my friends had disappeared because I am too tired to go out and do things a teenager does.  

I get dizzy if I stand for too long.  My legs are weak and my whole body is tired.  I feel like I have heavy chains weighing me down.  My eyes ache and my head pounds.   

No one is listening! 

Recently, I have been told my symptoms are ‘all in my head'.  I have been discharged from the only doctor who helped the paediatric Doctor.  I have been passed back to Child and Adolescent Mental Health Services (CAMHS) who want to push me. 

Why, when I am tired.  They say I have demand avoidance but how can that be true?  I haven’t avoided anything…….. I’m tired.  

by Olivia (aged 15) 

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