Originally experienced – Ongoing
Published on – 26th February 2025
The beginning of the illness was so disorientating that it took me a while to decipher what my symptoms actually were. I’m sure that will sound strange to some people, but it’s true.
My brain and body were doing things I couldn’t make sense of, and I then had to communicate it to the people around me.
I used to say, ‘it feels like the worst flu imaginable combined with seasickness, and I’m really really tired all the time’.
A recent study found that those from a lower socio-economic background were more likely to remain undiagnosed. There could be several different reasons for this but not having the correct vocabulary to describe what was happening to me, meant doctors were initially dismissive.
Though I persisted, trying my best to explain what I was experiencing on a day-to-day basis.
Following the diagnosis you need to explain it to friends and family, and this can be even more difficult. Their reading on the topic and understanding will be even more limited than the doctor, and most will struggle to relate.
Analogies are a great way to ‘dumb it down’ so to speak. The most popular one used by ME/CFS sufferers is of a dodgy phone battery. You might leave your phone on charge all day, but every morning it’s still knackered refusing to do what you want, and ready to shut off at any time.
But the dodgy battery or the chronic fatigue, is just the start, it represents just one symptom.
With ME/CFS there’s also muscle pain, memory issues, IBS, orthostatic intolerance, brain fog, post exertional malaise, memory issues (cheap, I know), debilitating headaches and more.
The number of horrible symptoms is the reason why many people don’t like referring to the illness as ‘chronic fatigue syndrome’, believing that this makes it seem like tiredness is the only thing wrong with us. Therefore, I will call it ME/CFS throughout.
Let me delve into the four symptoms which impacted me the most.
Exhaustion
Exhaustion is a concept often misunderstood. Most people will remember the most tired they’ve ever been—usually after successive busy days at work or nights out. They’ll equate exhaustion with something that they’ve experienced before.
But for sufferers of ME/CFS, it is very different.
Exhaustion is the ocean. The deeper you get; the more pressure is put on your body. And when you hit a certain level, your body will either shut down or act out. I’ve had times where my body is so exhausted I’d get ‘the shakes’ or I would pass out entirely.
This came as a direct result of pushing myself too hard. But the difficulty came in knowing “what was too hard.”
For some people, it comes from running continuous marathons or staying up for 36 hours straight. Though for sufferers of ME/CFS it can come from a five-minute walk, or from simply standing up.
In this period of my life, I could still work, but I’d have to be so conscious of not overexerting myself for fear of a larger crash. Fear of falling deeper in the ocean.
Another analogy is of an airport trolley. If you squeeze on the grip, that trolley moves freely and in any direction. It’s so easy to use you’ll often forget you’re even applying pressure on the handle.
However, if you were to take your hands off the trolley, a brake would activate known as the Deadman Brake. Moving that trolley even a metre now would be incredibly difficult.
Living with ME/CFS is living with the Deadman Brake activated.
Sensitives
In the midst of a crash your body can be sensitive to everything, this means touch, light, temperatures and the worst for me was sound.
Everyday sounds like the whirring of the kettle, or the clunking of the washing machine would cut right through me and cause pain. I would wear my noise cancelling earphones to block out everything, but still silence would evade me.
One day, whilst lying in bed I could hear a fly in the room with me. My earphones were next door, so I tried to ignore the sound and get some rest.
Each flap of its wings was chipping away at something inside of me, and I knew that I needed to get rid of it.
Pillow in hand, I stood on my bed and swung. Seconds passed, I waited.
And the noise returned.
I tip-toed to the far wall, seeing my prey in sight. Whack.
But I followed through too much and hit myself in the face.
What ensued resembled a Looney Tunes-esque battle of wits, eventually ending when I collapsed back into bed unable to fight any longer.
The fly continued to mock me, but this time I could sleep through it. Exhausted and humiliated.
My sensitives would make me extremely irritable, verging on a complete arsehole some days. But when all you craved was a dark empty room, the chaos of the outside can often be too much.
Cognitive Issues
The most difficult symptom to process is whatever was happening in my head. One day your mind is reliable and free flowing, then the next everything is a struggle.
Using an analogy of a house, where everything felt safe and secure before, now the house is gutted, surrounded by fog and in the middle of nowhere. The type of house you’d see in a horror movie.
There’s a light-headedness which never leaves you. It’s like someone has opened the window on an airplane and no one has had the courtesy to shut it.
I took for granted how easy it was to just remember things, and I felt it slipping away.
It starts with mind blanks over a specific word, then stories from your youth, or dates you were told to remember.
But it quickly evolves into forgetting your phone number, or the name of the road you live on.
I’ve even had experiences where I was with friends that I’d known for over five years, and I’ve had to sneakily go on social media to help me remember their name.
Now this often fluctuates, exasperated by other symptoms. But coming to terms with the fact my brain now works in a completely different way, is still taking some getting used to.
Body System Failures
Have I mentioned I’m not an expert on the human body yet? Well, that will become even clearer with this section. I’m unsure if ‘Body System’ is even a correct term, but it helps me group together all the different systems I’m about to bitch about.
The immune system just stopped working. If I hear someone sneeze then I need to run for my life, because I will be collecting that virus. My immune system is like a blind bouncer, just welcoming every dirty illness into the nightclub that is my body.
The sympathetic nervous system is like a child toggling with a switch, except instead of a light turning on, it’s my fight or flight being activated. My heart rate would range from 39 to 120bpm on a normal day. My body not sure if it’s coming or going.
The digestive system becomes erratic and unpredictable. One of the many drawbacks of having your fight or flight being constantly activated is that it triggers some evolutionary body defect.
Thousands of years ago hunters and gatherers would need to move quickly to catch prey and evade predators. Their bodies worked out that if they were lighter then they’d be able to move quicker. In other words, they would poo or pee a lot in stressful situations to help them run faster.
In the 21st Century, no tangible benefit comes from losing your appetite or needing to go to the toilet when your body is in fight or flight. I’ve never performed better at an interview because I was 0.5lbs lighter, but still our stupid bodies haven’t learned.
The nervous system, the big baddie to people with ME/CFS. I have my nervous system to thank for most of my symptoms. The dizziness, the unrefreshing sleep, the fatigue, most of it really.
I once read a story that that celebrities with ME/CFS were flying to somewhere in Europe to get a new nervous system. Let me know where guys, I’ll leave tomorrow.
But the truth is, you’re stuck with the nervous system you have, and you need to find ways to make peace with it.
Over the years as my condition worsened these symptoms always remained.
But on the ME/CFS journey you’ll collect new ones and forget you had to tolerate others. It’s just part and parcel of life with a chronic illness.
LIFE IN A CRASH 