Introduction to ME/CFS Sound Sensitivity
Many people with ME, fibromyalgia and some other chronic illnesses experience sensitivity to light and sound. Both of these stimuli make demands on energy, this energy is used to ‘process’ the sounds and/or lights. Processing helps us to identify what they are and whether they’re an indicator of danger (a loud bang for example). For many people with ME hearing multiple sounds or having too many bright lights is extremely fatiguing. This is because the brain is constantly having to process each one and there is not enough energy left over for other essential needs. This overstimulation often causes symptoms of pain and fatigue.
It is rare for such sensitivity to have a positive side effect. Amazingly, I experienced a positive effect from my sound sensitivity, and am sharing this story with others in the ME community. This story was originally published in the Spring 2022 issue of the ME Essential Magazine.
Sound Sensitivity Prevents Blaze from Destroying Homes
The Nuisance Noise
I closed my eyes, digesting my supper is always such a bodily effort. As I lay in my quiet, dark bedroom I noticed a beep…beep…beep. I could also hear the TV downstairs although my parents had the volume low and a neighbour’s washing machine starting the spin cycle. Beep…beep…beep… Since developing severe ME 5 years ago, my sensitivity to light and sound is a constant curse. I hear the quietest things, often with louder things layered on top and find it exhausting.
I’d have to gather the energy to get my ear plugs from my bedside cabinet. But something stopped me; this noise was completely new. It didn’t sound insistent like a car alarm, but rather like the battery on something was dying; beep…… beep……beep. I couldn’t think of anything we owned that made that sound, but its persistence was already starting to cause an increase in my symptoms of pain and fatigue. I worried it might not stop soon.
It’s four steps from my bed to the door. I leant against the doorframe and concentrated hard. It didn’t sound as though it was coming from any room upstairs… beep……beep……beep. I got my mobile and rang my Mum downstairs to ask for help.
Mum came up and thought it might be coming from outside and opened the window by my bed. Immediately I heard the beeping louder, there was a faint whiff of smoke and a few seconds later my asthma symptoms started. I realised there must be a fire somewhere. I looked around and saw small flames on the floor of my neighbour’s kitchen. That neighbour was away, but my mobile was still in my hand.
As I dialled 999 and asked for the fire service, Mum closed the window. They asked what my neighbour’s door number was, it’s a terraced street but brain fog was kicking in from the exertion and I couldn’t remember whether it was up or down from ours. My Mum gave the door number and they advised us to evacuate. With my last bit of energy, I tried to explain I was disabled and bedbound. I collapsed onto the pillows and Mum went to warn the neighbours on the other side.
The first fire engine arrived in under five minutes. It was joined by a second plus the Police and rapid response Paramedics. They set up their lights and hoses, and ensured the other neighbours were evacuated. A battering ram was brought in to break down the front door. I pulled myself up to look through the window. One of the firefighters signalled to me; pointing at me and making a phone gesture. I nodded. He started speaking, so with an effort I opened the window to hear him. He said it was safe for me to stay inside for the moment, but he’d come and fetch me if that changed. I closed the window as quickly as I could; the smoke was unbearable.
A Different Kind of Vulnerability
One of the hardest things I found about becoming disabled is the permanent feeling of vulnerability. Relying on others for basic care needs, having to be spoon fed when I’m too weak to lift my cutlery. I’d always been fiercely independent. I’d been a research scientist doing fieldwork on erupting volcanoes and a reservist for the RAF (including a stint with the Search and Rescue helicopter team). I had been well trained, fit, quick witted and eager to be where the action was.
As I lay on my bed crashing from the smoke and the flashing lights, it hit home just how vulnerable I truly was. Being housebound, most ‘threats’ to me come from my own body or my immediate environment. Here was an external threat which may prove difficult to control. I might have to go outside; it would be smoky, cold, there was nowhere to lie down, and there were so many people. I’ve been shielding for almost 2 years (my 1st jab didn’t go so well) so the thought of going out there filled me with fear and anxiety.
Once the fire was out, the firefighter who’d spoken to me earlier came upstairs to see me. My parents had explained to him my situation. He seemed understanding, noting down my details and making sure that I was feeling OK. I thanked him for letting me stay inside, the last thing I needed was a setback right before Christmas.
Only I had heard the death throes of the neighbour’s smoke alarm. It wasn’t as loud as it should have been because the batteries were so low (ironic much?). The neighbours on the other side had, like my parents, been watching TV and not heard it. There was very little fire damage, a few small kitchen appliances would need to be replaced. The smoke damage was greater, but thankfully no one was hurt. If the fire brigade had not been alerted so quickly, it would have been a lot worse. The thought that something positive had come from such debilitating symptoms really cheered me. It’s so rare to find a positive with this disease. In the weeks following as I recovered from the inevitable crash, I reminded myself that I’d managed to do something valuable.
Conclusion ME/CFS Sound Sensitivity
There are a variety of aids which can help with sensitivity to light and sound. Ear plugs, ear defenders or noise cancelling headphones are popular choices for people with ME/CFS. Our review of ear plugs will be up in the Adaptation section soon. Similarly, black-out blinds, curtains and low level lights (e.g. night lights) can be useful. Do you experience sensitivity to light or sound? Do you have any tips on how to deal with it? Please let us know in the comments below.