From Chronic Fatigue Syndrome to Rock Bottom
- Nov 3, 2025
- 4 min read
Updated: 1 day ago
You might like to start with my earlier posts: From Salsa Dancing to Swine Flu and From Swine Flu to Chronic Fatigue Syndrome, which share my life leading up to catching Swine Flu, how my health gradually declined and my Chronic Fatigue Syndrome diagnosis.
Life Had Changed Almost Overnight
I felt robbed. I had plans. I had started to build a life after years of unhappiness. Now my boyfriend was working during the week, then spending his weekends doing the shopping, washing and cleaning, as well as looking after me. He was no longer my boyfriend, he was my carer. On more than one occasion, I sat down and told him he was free to leave our relationship. I felt I was holding him back.
Things had to change. I hired 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. I couldn’t possibly walk around Birmingham Children’s Hospital, even with the walking sticks I now used.
Pushing and Deteriorating
My GP referred me to an Occupational Therapist. I had just one appointment with her before she retired. Her suggestion was to find the baseline of activity I could manage in a day and start increasing it bit by bit¹. There was no advice on how to do that, 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. They all took differing amounts of energy. She just reiterated that I should walk a bit more each day. I felt very misunderstood and unsupported.
“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 worse and more complicated than that.
Walking a bit more each day wasn’t going to work. On many occasions just 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 to feed my son when he got home from school. How could I possibly also try to walk down the road when every movement felt like wading through thick treacle? I felt like a failure, that I just wasn’t trying hard enough.
I tried so many times to do more than I could manage. I felt paranoid, thinking: I cannot possibly feel this ill, be in this much pain, and feel this fatigued without a “real” and serious diagnosis.
Thinking I could continue as ‘normal’, I would 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 would come: days and days of crippling pain and fatigue, making it very hard to function at all.
Alongside the fatigue, the pain also became more constant, and began to impact my daily life in the same way. My GP prescribed me more medication, and explained that I also had Fibromyalgia. This came two years after the ME/CFS diagnosis.
My Personal Annus Horribilis (Year of Disaster or Misfortune)
Once my son had turned 16 and finished his GCSEs, he went to live with his dad. I knew it wouldn’t be all that he hoped for, but it was something he had to discover for himself. He was now 100 miles away from me, very unhappy and at times on the phone in tears at 2am.
Soon after, I was having to battle to get the social security benefits I was entitled to, while being left with very little to live on. I gave up my car and my precious independence. I rarely had the energy and cognition to drive anyway, so I couldn’t justify an expense I could no longer afford.
A few months later, a letter came from my landlady. She wanted to sell the house, so I had to find somewhere else to live. This had been my home for 13 years. But, I couldn’t even get a viewing of a property once estate agents learned that I wasn’t working and was on housing benefit². I had to go the social housing route, and I was a priority. Coping with stairs was very difficult for me, especially with no downstairs toilet. So I needed a more appropriate home for my needs.
Before I could process all of that, my boyfriend of four years eventually walked out on me. No explanation, just “I can’t do this anymore” and he was gone. I appreciate I may have been very difficult to be around. On top of living with daily pain, crippling fatigue and brain fog, I was missing and worrying about my son, running up debts and had to find somewhere to live. I was utterly devastated. Completely heartbroken.
Now what? I didn’t have the energy to wash and dress most days, let alone fight for my financial entitlements, look for somewhere new to live, and contemplate moving house. All while nursing a broken heart.
This was rock bottom.
¹ At the time, approaches based on gradually increasing activity, including Graded Exercise Therapy (GET), were commonly recommended for people with ME/CFS. The NICE guideline was updated in 2021 and no longer recommends GET, recognising that fixed incremental increases in activity can worsen symptoms for many people with ME/CFS.
² This didn’t become illegal in England until 2020.
Read the next post: From Rock Bottom to Starting Again where I share what happened when I reached rock bottom, and how, slowly, I began to find my way back.
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