When people hear “Myalgic Encephalomyelitis” (or ME), they often assume it means I’m just a bit tired. But this isn’t tiredness—this is being completely drained of all energy, strength, and ability to function.
This is my body refusing to cooperate. Muscles are burning with pain from the smallest movement. Standing up feels like lifting weights. There are days I can’t walk more than a few steps. Even sitting up can feel impossible. This illness has robbed me of so much: time, independence, and connection.
So no — it’s not just tiredness.
What It Actually Feels Like
Imagine you’ve got the flu, food poisoning, a migraine, and jet lag all at the same time — now imagine that never goes away. That’s a bit closer to what ME feels like daily.
There are times I’ve missed important moments because my body wouldn’t allow me to get out of bed. Not because I didn’t want to — because I physically couldn’t.
I’m sharing this not for sympathy, but for understanding. If you love someone with ME, thank you for trying to understand what we go through. It means everything.
NICE Guidelines: What the Experts Say
The NICE guidelines lay it out clearly. ME isn’t just vague tiredness. Here’s what they say to look for:
Suspect ME/CFS if:
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You’ve had core symptoms for at least 6 weeks (adults) or 4 weeks (children).
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Your daily function is significantly reduced from pre-illness levels.
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No other condition explains the symptoms.
Core Symptoms:
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Debilitating fatigue
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Post-Exertional Malaise (PEM): Worsening of symptoms after any effort
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Unrefreshing sleep
Most days, I can’t put one foot in front of the other. No matter how much rest or self-care I get, it’s not enough. The energy never recharges. I’m stuck in a loop of pain and exhaustion.
When People Don’t Get It
I’ve had countless conversations with friends, family, even employers — and still, I’m met with blank stares. Some people just don’t want to hear it. Others try but struggle to grasp the seriousness of it.
And that’s hard. Because every time I have to explain it, I’m using up energy I don’t have. Sometimes I give up mid-conversation, not because I don’t care, but because I physically can’t continue. It’s disheartening.
This illness is isolating. People only see me on my “good” days, not the hours of recovery it takes to do something small. And the worse I get, the more I shrink away.
I’m not angry. Just tired — in the most soul-deep way you can imagine.
2024: A Rough Start
This year’s been brutal. If you read about my Christmas disaster, you’ll know it started badly. Then came the end of January, and suddenly my body turned on me again.
Within hours of feeling worse, I couldn’t keep food or drink down. Vomiting hit hard and fast, followed by relentless trips to the bathroom — 25 to 30 times a day. Add that to the fact that walking eight steps to the toilet on a good day leaves me exhausted.
Tears were inevitable. I had nothing left.
I’ve been through this before. Last time, it ended with a hospital stay and talk of an NG tube (a feeding tube through the nose). I fought it off back then and I’m doing the same now, though I know it’s risky. But the thought alone is too overwhelming.
The Medical Maze
Getting medical help isn’t easy when you live like this. After contacting my GP, I was redirected to 111, who then told me I needed to speak to my GP again. It’s confusing and exhausting.
Eventually, my doctor agreed to a home visit.
Every day since, I’ve known I should be in the hospital. The pain is intense. My history suggests this could be C. Diff again — last time, it required full isolation. I felt like I was in a scene from E.T., sealed off and poked with needles.
This time? I’m terrified. My weight is low, my liver is already under stress, and the suggestion of invasive procedures is back. I know what they want to do. I also know I can’t go through that without sedation.
I’ve begged. I’ve emailed. Nothing changes. It’s like shouting into the void.
The Reality of Living Bedbound
Every day, I live with severe pain, managed with a mix of morphine, Gabapentin, Amitriptyline and Oramorph. Pain is not new. What’s worse is the helplessness.
In 2023, I left the house maybe 8 times. Eight.
I rely on Graham to get to appointments, and he only has 52 weekday days off a year. Emergencies don’t wait for convenient scheduling.
This year already, I’ve got 4 dental appointments booked. I also need hospital follow-ups for my hands and a post-fall X-ray. And Graham’s mum needs him too.
The biggest hurdle? Even when a slot opens up, I need to be having a good ME day just to attend.
Waiting On Results (and Holding My Breath)
I’m still waiting for test results. It’s agonising.
I want to stay positive, but how do you act normal when everything inside you screams that something’s wrong? The worry is constant. And yet, I still have to manage daily life.
I long for a healthcare system that treats me, not just my symptoms. One where I don’t have to repeat myself over and over. Where I’m not dismissed or made to feel dramatic.
Oh — and our boiler broke. In January. Of course it did.
So What Is Myalgic Encephalomyelitis?
ME is a complex, misunderstood, and devastating neurological illness. Here’s a more detailed look at common symptoms:
Core Symptoms:
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Debilitating fatigue (not relieved by rest)
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Post-exertional malaise (PEM)
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Unrefreshing sleep
Other Common Symptoms:
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Memory and concentration issues (brain fog)
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Sensitivity to light, sound, temperature
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Flu-like symptoms
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Muscle and joint pain
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Headaches
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Digestive issues
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Dizziness, fainting
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Numbness or tingling
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Heart palpitations
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Night sweats and chills
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Low-grade fever
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Tinnitus
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Slurred or slow speech
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Difficulty walking or moving
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Hormonal changes
Learning to Live With ME
There is no cure. There’s no miracle fix. All we can do is manage — and for that, we need awareness and support.
For too long, I pushed against this illness. I tried to keep going, to keep working. But I was only making myself worse.
This is my life now. I’m older. I’m heavier. My body is weaker. And as frightening as it is, I know that today may be the best I’ll feel. So I’m learning to work with what I’ve got.
Waiting is part of my life now. Waiting for answers. Waiting for appointments. Waiting to feel well enough to sit up, to write, to speak, to be seen.
And yet, I’m still here. Still writing. Still sharing. Still hoping.
Final Thoughts
Myalgic Encephalomyelitis is not just tiredness. It is an invisible, relentless battle. It is losing pieces of yourself over and over again.
Thank you for reading this far. Thank you for trying to understand. If you want to hear more, I’ve spoken openly on my YouTube channel about life with severe ME and the recent Dragons’ Den claim of a “cure.”
🫶 Your support means everything.
❓What is Myalgic Encephalomyelitis (ME)?
Myalgic Encephalomyelitis (ME), also known as ME/CFS, is a complex, chronic neurological illness that causes extreme fatigue, post-exertional malaise (PEM), unrefreshing sleep, pain, and cognitive issues. It can severely limit a person’s ability to carry out everyday activities.
❓ Is ME just being tired all the time
No. ME is not the same as feeling tired. The fatigue in ME is extreme and not improved by rest. Even small tasks can lead to a complete crash of symptoms, known as post-exertional malaise. It is a debilitating condition that affects every part of a person’s life.
❓How can I support someone living with ME?
Start by listening and believing them. Offer help without judgment, respect their energy limits, and understand that plans may need to change suddenly. Your support, patience, and willingness to learn makes a huge difference.
I’m always here if you’re struggling and want to reach out. Contact Me
Let’s keep talking. Let’s keep fighting.
Love Always
Alisha ❤️
#MEAwareness #ChronicIllness #DisabilityAwareness #MyalgicEncephalomyelitis #SevereME #InvisibleIllness
