From Swine Flu to Chronic Fatigue Syndrome
- Sep 27, 2025
- 4 min read
Updated: 3 days ago
You might like to start with my earlier post: From Salsa Dancing to Swine Flu, which shares my life leading up to catching Swine Flu, the years that followed, and how my health gradually declined.
Giving Up the Life I Loved
After the disastrous ‘romantic’ weekend away, I could no longer manage my voluntary job, despite trying for several weeks. The brain fog, fatigue, pain and vertigo from the Swine Flu remained, and I had to give up the role I loved. My dream of earning my own income was taken away. The life I had carefully built was slipping through my fingers, and there was nothing I could do to stop it.
In the years leading up to catching Swine Flu, life had been a continuous climb up a mountain: mental health struggles, a sick child, debt problems, moving house four times in two years, trying to study for a degree, my son’s diagnosis, and a stressful divorce all came in quick succession. I finally felt I had reached the top, ready to enjoy the view. My son was thriving, I had a boyfriend I adored, and there was a real possibility of returning to work doing something I loved for a cause I was passionate about. Then life as I knew it was over. I felt adrift at sea, with no control over where I was heading.
Worsening Symptoms
Over the following months my health deteriorated further. I was forgetting the words for everyday things. My mobility was declining. I was living with constant fatigue and pain. An aching, all-over, right-into-the-bones pain. I was often far too hot and very sweaty, especially if I exerted myself in any way. By ‘exerting myself’ I mean just trying to get washed and dressed, or attempting to climb the stairs to get to the toilet. There was even a time when my boyfriend and my 14-year-old son needed to help me off the chair, up the stairs, and onto the toilet. It felt as if I still had the Swine Flu, but worse, much worse.
Some days I would sleep for 12 hours. Yet I would wake feeling unrefreshed and utterly exhausted. Other times it was a struggle to stay asleep for very long, or even get to sleep at all. My legs were restless. I had night sweats. Staying in one position for any length of time was agonising. But the simple act of moving position was sometimes impossible. There were days, so many days, when I just stayed in bed, with only the energy to get to the toilet.
An Unorthodox “Test”
There was a litany of appointments, blood tests, and scans. This was alongside my son’s regular appointments. At one point, between us, we clocked up nine different hospitals in nine months!
Some tests revealed a few things, but there was nothing to fully explain all of my symptoms. I didn’t have Multiple Sclerosis, I hadn’t reached the menopause yet, or had anything else that could be tested for. I felt like I was on a constant rollercoaster in the dark, with no end or answers in sight.
I had been trying to wade through the brain fog by Googling to find answers for myself. I joined chat forums and various online groups and found people I identified with, who had symptoms similar to mine. They too were misunderstood by the medical profession and given very little help and support. In finding each other, they were able to share their coping strategies.
I went to see my GP, to talk about what I had learned online. He told me that his suspicions were the same as mine: he also thought I had Chronic Fatigue Syndrome, also known as M.E. He said he knew a way to find out.
“Oh,” I said, “I didn’t know there was a test for that!”
“It’s not a formal test,” he told me, “but I feel it will tell us for sure if we’re right. Go home and drink a couple of glasses of wine this evening, and see what happens. Chronic Fatigue Syndrome causes alcohol intolerance, so if you do have that, we’ll soon know. Let me know what happens.”
This was totally unorthodox advice. But I trusted my GP. He seemed as keen to get some answers as I was. And I was desperate for answers.
That evening, I duly had my two small glasses of wine. They tasted divine after so long without alcohol. The next day I crashed for several days. I was completely knocked for six. My GP then referred me to a consultant in Infectious Diseases. I was thrilled! Finally I'd be seeing a specialist who knew all about Chronic Fatigue Syndrome. Now I would get some answers.
Chronic Fatigue Syndrome Diagnosis and Disappointment
I couldn’t have been more wrong. I had a few more tests. Then I saw the consultant.
She asked which symptom was worse for me: the fatigue or the pain. I thought for a moment, and told her it was the fatigue. I explained that to an extent I could push through the pain. It was the fatigue that really held me back. It dragged me down, like my veins were full of concrete.
The consultant explained that she would record my diagnosis as Post-Viral Fatigue Syndrome, as the onset was the Swine Flu. In other words, Chronic Fatigue Syndrome. I was discharged back to my GP. He was already doing what he could, prescribing me antidepressants to help with the pain and sleep. There was nothing more on offer.
This was three years and one month after I had Swine Flu. I left feeling deflated and confused.
This was it. This was now my life.
Read the next post: From Chronic Fatigue Syndrome to Rock Bottom where everything began to fall apart.
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