How does it feel to receive diagnosis of ME/CFS or Long Covid?

12 years ago this July, I received a life-changing diagnosis.

On 11th July 2013, I attended my daughter’s sports day, she was six at the time.

It was a hot day and I remember dragging myself around the sports pitch. It was a huge effort just to keep upright.

That afternoon, I had a doctor‘s appointment. I’d been struggling for a few months with extreme tiredness, brain fog, dizziness, and no matter how much sleep I got, I was waking up tired with no energy.

At work, I struggled to focus in meetings, and it was sometimes difficult to string a sentence together. I was just waiting for the day to end.

When I got into my car to drive home, I had to put my head between my knees until the nausea passed.  Once home, I crashed out on the sofa, barely able to function or look after my daughter.

At the appointment, the doctor asked me about my symptoms. She knew I had a thyroid condition (Hashimoto’s disease) which was managed by medication (apparently), and she also knew I avoided gluten as it gave me migraines and muscle pains.

She asked me about my stress levels. In the year running up to the appointment, I had increased my working hours to full-time as I was running a big project at work. I wasn’t about to work full-time hours for part-time pay. My husband was unemployed at the time so I became the main breadwinner. So both work and home life were pretty stressful.

She also asked me if I’d had any viruses recently. The previous Christmas I got norovirus closely followed by the flu. In early January I worked went straight back to work after being off for the usual few days for Christmas. Not long enough to recover I later discovered.

I left her office that day with a diagnosis of Post Viral Syndrome. I was told to take some B12, rest, and she signed me off work for a couple of weeks. I had no idea what post viral syndrome was so I googled it when I got home to discover it was another name for Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS) or ME/CFS.

That’s when the shock set in. This couldn’t be right, I’d never been signed off work before, or even had significant time off sick. But at least I was diagnosed straight away, my doctor knew my history and was clearly aware of these conditions. For some, it takes months or even years to get the right diagnosis. Nevertheless, I took the doctor’s advice, but nothing changed. I did very little and rested as much as I could, but I was still constantly exhausted and barely able to function.

Those 2 weeks off work turned into 4 months. During that time, my emotional health spiralled and my anxiety went through the roof. Why wasn’t I getting better? Why do I feel worse? What if I don’t get better? Will I ever work again? How will we manage?

I called the doctor and she said this emotional distress was normal and referred me for some Cognitive Behavioural Therapy (CBT). Diagnoses of Generalised Anxiety Disorder (GAD) and moderate depression followed, along with a prescription for antidepressants. Unfortunately these caused hallucinations and wrecked my sleep so they were soon stopped.

Those initial 4 months turned into 2 years of trying to return to work, relapsing with increasingly severe symptoms, being signed off work again, and repeat. I was eventually able to take redundancy, and that’s when the real work began.

I'll be sharing my recovery story in a future article.

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And if you're struggling with similar symptoms and are looking for personalised support on your journey to better health, book a discovery call and let's chat.

And if you're struggling with similar symptoms and are looking for personalised support on your journey to better health, book a free discovery call and let's chat.

The content on this page is not intended to constitute or be a substitue for professional medical advice, diagnosis, or treatment.