Over the past few weeks, I’ve been struggling more than normal, every day, every minute, every second, the kind of pain where the pain wraps around every muscle, and even thinking feels like a marathon. I wanted to share what life with Myalgic Encephalomyelitis (ME/CFS) looks like on those days, and also the things I’ve found that help, in case they might help someone else too.
This isn’t medical advice—just my lived experience. But if you live with ME, I hope this feels a bit like a hand to hold.
💢 The Pain: Whole Body and All-Consuming
When it’s bad, it hits everywhere, and my whole body feels like it’s working against me. Every single muscle screams. Even lying still hurts. I’ve found lying on my left side to be the least painful option—but even then, I’d still rate it a 7 out of 10 on the pain scale. And that’s me trying to rest.
This isn’t just fatigue. This is pain that overwhelms your nervous system. Research shows people with ME/CFS experience central sensitisation, which means our brains respond to pain signals more intensely. It’s not imagined—it’s biological.
🔇 When Everything Hurts – Even Sound and Light
On my worst days, even sound physically hurts. Light is agony. My bedroom becomes my sanctuary: dark, silent, and still. The cognitive fog takes over too—I can’t form thoughts properly, I forget words, and making even small decisions feels impossible.
I’ve found myself holding in the urge to go to the toilet—not because I want to, but because the pain of moving is so intense that I weigh the cost of every single step. But this can cause more problems long term, so it’s something I work on gently managing.
🍽️ Eating Feels Like a Workout
My appetite disappears. Even if I feel hungry, lifting a fork or raising my arms to my mouth is exhausting. There’s a strange disconnect—as if my brain is giving the order, but my body simply can’t follow through. My jaw aches from chewing, and I have to rest between bites.
This is often tied to dysautonomia and muscle fatigue, which are common in ME/CFS. Eating becomes an energy-heavy task—something most people wouldn’t even think about.
🥤 Dry Mouth and Staying Hydrated
Not eating or drinking much leaves me with a dry mouth. So I position my straw bottle so the straw rests gently by my lips. That way, I can sip water when I’m able, without needing to lift or tilt anything.
✨Amazon Affiliate link: Here is a link to my favourite straw-top bottle that helps prevent spills – 🥤 Stanley Quencher H2.0 Flowstate Tumbler (1.2l)
I learned early on to only use spill-proof bottles or cups with lids—my hands drop things easily, and cups have gone flying. The laminate flooring by my bed has taken a bit of a battering
💬 I’ve also written about my experience accessing domiciliary dental care in Liverpool as someone with ME because dry mouth and poor mobility can make dental health a real challenge.
👉 Finding Dignity in Dental Care: My Experience with Domiciliary Dentistry in Liverpool
💊 My Daily Medication Routine
Everyone’s treatment is different, but I wanted to share mine to give a real view into how complex it can be. Please speak to your doctor about what’s right for you.
Morning:
Zomorph (40mg, slow-release)
Gabapentin
Mefenamic Acid
Propranolol (for anxiety)
Afternoon:
Gabapentin
Mefenamic Acid
Propranolol
Omeprazole (for acid reflux)
Evening:
Zomorph (40mg)
Gabapentin
Mefenamic Acid
Propranolol
Amitriptyline
Duloxetine
Hydroxyzine (to help with itching and sleep)
For breakthrough pain, I have Oramorph.
Itchiness from pelvic and hip pain is a strange kind of torture, especially when I don’t have the strength to scratch. I use a long-handled scratcher (a lifesaver!) and sometimes just practise controlled breathing to get through it. It might sound silly, but it helps.
✨ Here are my Amazon Affiliate Links for my pill organiser and to the most amazing back scratcher :
🦯 Tools That Helped Me Stay Me
One of the first things I invested in was a pair of walking sticks. At first, I felt embarrassed, but using them meant I could walk with less energy. Over time, I moved to crutches and later a wheelchair. Each one helped me keep doing what mattered—like spending time with Graham and Rebecca, or walking Alfie for a little while.
If you’re at that stage where you feel unsure about mobility aids, please hear me: they don’t mean you’re giving up. They mean you’re adapting so you can keep living. That’s strength.
✨My Recommendations -I’ve had my Glamsticks crutches in Sparkling Black Diamanté and a matching walking stick in Sparkling Clear Diamanté for over 10 years now—and they’re still in fantastic condition. I originally tried Glamsticks after a friend recommended them, and honestly, I’ve never looked back. Not only are they stylish and beautifully made, but they’ve also stood the test of time—and they still turn heads wherever I go.
If you’re looking for mobility aids that feel more like a statement of confidence than a medical necessity, Glamsticks are absolutely worth a look.
🏡 Tech That Gave Me Back Control
When you use crutches indoors, even switching on a light becomes risky. If you slip on something while trying to turn a lamp on, you could fall—and that’s the last thing we need.
Philips Hue lights changed everything. We installed them in the hallway, bedroom, and living room. Now, I can ask Siri or Alexa to turn the lights on or off without moving. I also set timers based on sunset to help with home security, which helps ease my anxiety, too.
Google Nest means I can now control heating and hot water from my phone. Before that, I had to go downstairs to switch it on—a mission when you’re home alone and exhausted.
✨ Here are my Amazon Affiliate Links-
Philips Hue Starter Kit – https://amzn.to/42RMgxT
Google Nest – https://amzn.to/3Xc4jfE
These little tech changes have had a huge impact on my independence and mental health. Small actions add up to big relief.
🛏️ Occupational Therapy Support That Changed My Life
My OT (through Broadgreen’s ME Team) came out and spent real time with me. She made a few changes that honestly transformed my safety and comfort:
A second bannister on the stairs
An adjustable backrest to sit up properly in bed
A specialist mattress to relieve pressure points
A toilet support frame (no more leaning on the sink!)
A shower stool – a complete game-changer
🪑 Please get a shower stool if you haven’t yet. Even if you think you don’t need one now, it can help conserve energy and reduce the risk of fainting or falls.
✨ Here are my Amazon Affiliate Links –
Aidapt Shower stool – https://amzn.to/4jnCk5a
Aidapt Toilet Surround – https://amzn.to/3Xc4jfE
Always ask your doctor to refer you to the occupational health team (not all areas have them😭) if you need help daily, as you may be entitled to items like these and much more.
🥄 Spoon Theory: A Must-Read
If you haven’t read the Spoon Theory by Christine Miserandino, it’s a brilliant way to explain how chronic illness affects your energy. You only have so many “spoons” per day, and every little action uses one up.
If getting a shower uses 4 spoons, using a stool might only use 2. Turning lights on with your voice? Saves another spoon. Every spoon saved is energy you can spend doing something you choose.
💔 The Mental Side: This Illness Took Everything
Before ME, I worked full-time. I went to the gym. I had a social life, holidays, adventures. Then everything changed.
There were times when I couldn’t even get to the bathroom on my own. And the harder I fought against the illness, the worse I became. I felt like I was disappearing.
💛 Finding Joy in the Little Things
Now I’ve learned to save even half a spoon for things that bring me joy—like FaceTiming Becks (even if I’m just listening), or cuddling Alfie and Archie. These small things help top up my dopamine and serotonin tanks, and honestly, that can make all the difference on dark days.
ME has no cure right now. But I’ve found ways to live with it, on my own terms. And so can you.
🛍️ Looking for the Products That Help Me Day-to-Day?
I’ve put together a completely separate post that goes into the gadgets, tools, and home adaptations that make my life with ME/CFS a little more manageable—everything from tech to mobility aids to kitchen gadgets. You can read it here:
👉 My Chronic Illness Essentials: Tools That Help Me Live Life with ME/CFS
📬 Need Help? I’m Here
If there’s something I can help with or if you have a question about anything I’ve mentioned, please don’t hesitate to email me. Depending on how I’m feeling, I may take a little while to reply, but I will reply.
Sending gentle hugs, spoons, and love to anyone reading this who’s facing the same battles. You are not alone. You are strong.
And you are seen.
Love Always
Alisha ❤️
