From Swine Flu to Chronic Fatigue Syndrome
- Yew and Me
- Sep 27
- 9 min read
Content note: This post is heavier than my usual ones and includes some difficult moments, including thoughts of not wanting to go on. Please take care while reading, and, if you feel it will be too much for you, leave it to read another time. The story doesn’t end here though — in a future post I will share how I began to rebuild, from the bottom up.
Life After Swine Flu: Worsening Symptoms
You might like to start with my earlier post, From Salsa and Zumba to Swine Flu, which shares my life leading up to catching Swine Flu, the years that followed, and how my health gradually declined until I had to give up the hobbies and plans I loved.
Over the following months, the symptoms just increased: digestive issues, mobility issues (now I was the one using not one, but two sticks!), brain fog, debilitating fatigue, and pain — an aching, all-over, right-into-the-bones pain. I was constantly 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. That was a real low point — imagine your partner of less than 18 months and your 14-year-old son having to help you off the chair, up the stairs, and onto the toilet. It felt as if I still had the Swine Flu, but actually worse — much worse.
Some days I would sleep for 12 hours, then still feel unrefreshed and utterly exhausted. Other times I would struggle to stay asleep for very long, or even get to sleep at all. I had restless leg syndrome, night sweats, and so much pain that staying in one position for very long was agonising. But I was so fatigued that the simple act of rolling over was sometimes impossible. There were days — so many days — when I just stayed in bed, only having the energy to walk the few steps to the toilet as often as was needed, but none left for anything else.
A Litany of Doctors and No Answers
There was a litany of doctors’ appointments, blood tests (that’s when the Swine Flu was confirmed, along with an Epstein–Barr virus I don’t recall having), hospital appointments, and scans. This was alongside my son’s regular appointments. At one point, between us, we clocked up nine different hospitals in nine months.
This was all exhausting and very worrying. Some tests revealed a few things: extremely low vitamin D, a scarred kidney, hiatus hernia, and gallstones. But there was nothing to fully explain all of my symptoms. I didn’t have MS, I wasn’t going through the menopause, or anything else that could be tested for. Life felt like being on a constant rollercoaster in the dark, with no end or answers in sight.
Finding a Community
That was when my GP confirmed that his suspicions were the same as mine. I had been trying to wade through the brain fog by Googling, joining chat forums, and various online groups. I had found a group of people I identified with, who also had numerous different, apparently unexplained, symptoms — some the same as mine, others not.
They were a group who seemed marginalised by society: misunderstood, not believed, and just forgotten about. The medical profession couldn’t or wouldn’t believe or help them. They were left to find each other and figure out ways to cope with their symptoms, with only pain relief and antidepressants on offer from their doctors — if they were lucky.
An Unorthodox “Test”
My GP said, “I think you’re right, you have Chronic Fatigue Syndrome, and I know 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 know 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, I know, but I trusted my GP, who seemed as keen to get some answers as I was. And I was desperate for those answers.
That evening, I duly had my two small glasses of wine, realising it was a long time since I’d had a drink. The next day I crashed for several days — I was completely knocked for six. I was then referred to a consultant in Infectious Diseases by my GP. I was thrilled — finally a specialist who knows all about Chronic Fatigue Syndrome (CFS)! I thought I’d be one of those rare, lucky people who would get treatment, support, answers, and help.
Chronic Fatigue Syndrome Diagnosis and Disappointment
I couldn’t have been more wrong. I had a couple more blood tests and, for reasons I still don’t know today, a chest x-ray. Then I got to see the consultant.
She asked which symptom was worse for me: the fatigue or the pain. These were my two worst symptoms at the time. I thought for a moment, and told her it was the fatigue. I explained that the pain, to an extent, I could push through, but it was the fatigue that really held me back. It dragged me down, like my veins were full of concrete.
She then 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. And if I had said the pain was worse, she would have diagnosed me with Fibromyalgia. She discharged me back to my GP, declaring there was nothing more she could do beyond what he was already doing (prescribing antidepressants to help with the pain and sleep).
This was December 2012 — three years and one month after I had Swine Flu. I left feeling deflated and confused. Just like all those marginalised people I had been reading about, I, too, was now discarded, as someone who couldn’t be helped. This was it — this was my life.
Life Changed Overnight
It just wasn’t fair. I had plans; I was starting to build a life after years of unhappiness. But now, my new partner was no longer my boyfriend, but my carer. During the week he worked, and at the weekends he did my food shopping, cleaned my house, and did my laundry. On more than one occasion, I sat down and told him he was free to leave me — this wasn’t what he signed up for. But he chose to stay.
Things had to change. I realised I had to do things differently and live differently. I employed a cleaner and started getting my shopping delivered to the house. And I bought a second-hand wheelchair. Not an easy decision, but it was the only way I could attend my son’s hospital appointments (which my partner was now taking him to). There was no way I could walk around Birmingham Children’s Hospital, even with my walking sticks.
Occupational Therapy and Misunderstanding
I was referred to an Occupational Therapist. I had just one appointment with her before she retired. Her advice was simple: find my baseline of activity I could manage in a day and start increasing it bit by bit. There was no advice on how to do it, other than to walk a little further down the road each day.
I even asked her how I could find a baseline when every day is different. I might have to do some laundry one day, put food shopping away another, or attend a medical appointment another. I certainly couldn’t do all three in one day, and they all took differing amounts of energy. She didn’t understand and kept pushing me to walk a bit more each day.
“You can’t spend your life sitting in here all day doing nothing,” she said.
This was not a lifestyle choice. I desperately wanted to be out of the house and living life. And this was not deconditioning — this was far, far worse and more complicated than that.
I have since learned that this approach is called Graded Exercise Therapy, and it was based on studies that have since been deemed to have questionable credibility. This advice was removed from the NICE clinical guidelines in 2021.
What the OT failed to understand was that on some days, sitting on the edge of my bath to brush my teeth with an electric toothbrush was far too exhausting. Yet I would still have to manage feeding my son when he got home from school. How could I possibly also try to walk down the road?
Boom, Bust, and Post-Exertional Malaise
I had tried so many times to do more than I was capable of. I would get paranoid, thinking: I cannot possibly feel this ill, be in this much pain, and feel this fatigued without a “real” and serious diagnosis.
I kept trying to snap myself out of it, do some housework, or go out with friends. But even when I was able to push myself a little, there was always payback. A day or two later, the crash came. Something I have since learned is called Post-Exertional Malaise (PEM), a classic ME/CFS symptom.
This cycle of pushing and crashing is called the Boom and Bust Cycle. I will write more about this in a future post.
By 2014, my pain levels had increased to terrible levels and were impacting my daily life as much as the fatigue. My GP then diagnosed me with Fibromyalgia and increased my medications to help relieve some of the pain.
2015: My Personal Annus Horribilis
The year before, my son had gone to live with his dad. This was one of the hardest times of my life. I knew it wouldn’t be all that he hoped for, but it was something he had to discover for himself. He was only 16, and now lived 100 miles away from me.
This triggered changes with my social security benefits, which in turn triggered the process to transition me from DLA (Disability Living Allowance) to PIP (Personal Independence Payment). Which wasn’t exactly a transition — it was far more like a battle.
I had been awarded DLA with no problem. Upon applying for PIP, although the questions on the form were slightly different from DLA, I knew that my limited mobility and ability to take care of myself meant I was eligible.
However, the DWP (Department for Work and Pensions), who process these claims, felt differently and turned me down. This was largely based on the written report from a face-to-face assessment that never actually happened. I had to appeal, which was a lengthy and stressful process.
In the meantime, I was left with just £50 a week to live on, after my rent and council tax were paid. Thankfully, earlier that year I had stopped driving, as I seldom had enough energy and cognition to drive safely anymore. But I still had to pay for gas, electricity, food, and everything else.
Then my landlady wrote to me, telling me she wanted to sell the house the following year, so I should look for somewhere else to live. This had been my home for 13 years. I quickly found out that privately renting would no longer be an option. I couldn’t even get a viewing of a property once the estate agents learned that I wasn’t working and was on housing benefit. (This didn’t become illegal in England until 2020.)
I couldn’t have come up with a deposit anyway. I was leaning heavily on credit cards just to keep my head above water. I had to go the social housing route, and, as it happened, the housing officer declared that I would be a priority. It was clear that coping with stairs was very difficult for me, especially with no downstairs toilet. So I needed a more appropriate home for my needs.
Then, my partner of four years decided to walk out on me, with no explanation, just: “I can’t do this anymore.” I appreciate I must have been very difficult to be around. I had a lot of stress going on, on top of living with daily pain and crippling fatigue. We weren’t living together, and he clearly didn’t want to make that step. Had he stayed, it would have been the obvious time to make that kind of commitment. So he took the only option he could see and left me when I was already on my knees.
I was utterly devastated. I was completely broken. I could see no way through and didn’t have the energy to wash and dress most days, let alone fight the DWP, look for somewhere new to live, and contemplate moving house — all while chronically ill, heartbroken, and financially broke.
One particular day, it felt there was only one way out of all this, only one way to stop the physical, emotional, and mental pain. This is when I truly hit rock bottom.
Taking a Breath Before Rebuilding
This is where I have to pause my story for now. It was the darkest point of my life, and writing about it has been hard — but important.
In my next post, I’ll share how, little by little, I began to rebuild from here.
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If you’re struggling yourself, please know you don’t have to go through it alone:
UK: Samaritans — 116 123, or www.samaritans.org
International: findahelpline.com
Believe me — brighter days are ahead. You just have to take that one step and reach out. We all deserve help when we need it.
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