In this story: Chronic fatigue syndrome /

"I’ve gone from being almost completely alone to having a social life and a fulfilling job."

“Despite being born blind in my left eye, I was a very healthy child and had no other conditions. This begun to change when I was 8 years old. I started to develop mysterious stomach pains that no doctor was able to explain. It worsened, reaching a peak when I was 13 and evolved into Chronic Fatigue Syndrome.

I could barely stay awake and would easily sleep upwards of 17-hours a day. Tasks that were simple before took energy I didn’t have. My body suffered from constant muscle pain and joint aches. Even sitting in a chair caused me discomfort. I could no longer go to school and spent my days alone in bed – exhausted and in pain. No one wanted to be friends with the girl who lived in bed. I also experienced quite severe depression and anxiety.

One small mercy was that my mum also has the same condition. Though it took a while, with time and support from my parents I was able to adjust and adapt.

At 17, I started to go out one day a week to study BSL. Then at 20, I volunteered with the Forth Valley Sensory Centre (FVSC). This built up my strength and allowed me to volunteer elsewhere and work part-time in retail. As I left school when I was 13 with zero qualifications, I wanted to earn some academic credentials to prove what I was capable of.

Just before and during the pandemic, I earned Highers in English, psychology, chemistry, and maths, a national certificate in social care, a SCQF in counselling, and certified in mental health first aid.

During a voluntary summer youth programme with FVSC, I was informed that the role of volunteer co-ordinator would shortly be available. I thought I’d try my luck – and I was successful! Though I still have my condition and have bad days, I’ve gone from being almost completely alone to having a social life and a fulfilling job. Soon I’ll begin my degree in computer science and psychology. I hope to keep going from strength to strength, and if not, I’ll learn to adapt again.”

Learn more about the support and services provided by Forth Valley Sensory Centre.

Read about the establishment of the Scottish Sensory Hub at the ALLIANCE.

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