Florence Nightingale’s birthday, 12th May, is International Awareness Day for neuro-endocrine-immune diseases. Multiple Chemical Sensitivity sufferer, Juliette Llewellyn, explores the travel accommodation lottery that comes with environmental illness.
“Top to bottom,” he says, as I roll my black suitcase to the lift. “We’re decorating top to bottom.” He presses the silver button.
“And we’re going to the first floor?” I ask.
“So, that’s the most recently painted?”
The lilac-shirted manager pauses. “Five days ago …”
I am quickly trying to absorb the situation. “It’s not enough time.”
“Oh.” His eyes dart. “There may be no paint?” I am unconvinced. The lift stops.
“Let’s see the room.” Exhausted from the journey, I agree.
Doors open and I gulp a lungful of chemical. Freshly laid pile springs underfoot.
“New carpet too?” I say.
“Yes.” He looks worried. We walk along the corridor. Has he even read the disability note I wonder?
“I requested a room without recent paints or new carpets.”
He stops. “Ah, this one,” unlocking a door. “Look, old carpet. “His chest puffs out.
I stare at the pristine walls. “But just painted.”
“Call me if there’s a problem,” and he is gone.
I collapse onto the bed and wrap a North Face scarf around my nose. This could be anywhere, it happens to be London. My health request has fallen by the wayside. It is the lottery people with Multiple Chemical Sensitivity (MCS) face when staying away from home. How I had longed for such freedom when housebound.
I lie resting, unable to enjoy the pressed white sheets. My chest is tightening with paint fumes and my temples start to throb. I feel frustrated. I am paying for a service. I was clear about my health requirements on booking and there was no mention of a refurbishment. I am learning a hotel chain’s system is too unwieldy to cope. A room for those in wheelchairs is their criterion for disability.
I think fast, fighting my body’s urge to sink. I need to transfer to another hotel, one in the chain without recent refurbishment. It is the only option to prevent a total relapse. I slump into a chair at reception. A trainee spots me and practises his new skills. “I’m really enjoying our fresh spring meals.” He grins, waving a menu in front of me.
“I’m not hungry,” I reply.
The manager reappears and a transfer is quickly arranged. My reason for booking a chain pays off. In future, I will also need to reconfirm, days before a trip, there is no refurbishment and organise back up hotels. Preparations are becoming a strategic operation.
On leaving, I negotiate the underground. Oyster bleeps compliantly as I step off the Northern Line. I arrive at the rearranged hotel, swipe my room card and push open the door. No painting and no new carpets. Energy drained, I take in the view. London buses circle and The Shard sparkles. I contemplate how to reach the bathroom. Needing to bathe and change for bed. Simple tasks. But I am unable to move. Lead weight muscles. Brainfog. I crumple into a chair.
My condition may sound unusual, but I am not alone. In fact forums of people via MCS-Aware, Allergy UK and The Environmental Illness Resource detail reactions (mild to severe) to fresh paint, carpet glues, DIY materials, toiletries and perfumes. Environmental Illness is becoming more prevalent. Handing over health needs to proprietors when we travel is a huge risk. and arriving under such uncertain conditions a strain.
I wake next morning still feeling nauseous. I peel off my pyjamas and stumble to the bathroom. It takes three hours to pack, punctuated by rests. I am ready just in time for midday check out. Determined to enjoy my stay, I board a nearby bus. Traffic is buzzing and my mind wanders to an easier trip in Scotland where my health requests were reduced to a two-minute phone call.
“What cleaning fluids and washing powder do you use?”
“Ecover [product suitability is individual],” the lady replies.
“Any recent decorating?”
“No, nothing for a year. I use natural paints anyway.”
The solution is simple. Focus on green awareness and my ‘disability’ disappears. It is easier to have a conversation about MCS needs with eco-minded places as lessening chemicals has already been considered.
Also a smaller independent company can be simpler as you talk directly to a proprietor. How health and disability requests are handled also makes a difference. Understanding they are key to a person’s ability to stay and not a general query.
“Next stop Museum of London,” blurts the bus tannoy.
I alight and stumble to my destination. Fatigue overwhelms but I notice a sign ‘Designing a Moment’. Beyond lays a room of long stems and copper petals. I immediately recognise Heatherwick’s Cauldron, beautifully sculpted to commemorate the 2012 Games. Memories of being a 2012 Paralympic Games volunteer flood back. Is this what is left of London 2012’s bright sparks? Of a hope disabilities will be accepted?
I push away such thoughts. It was my desire to explore 20 years ago that triggered MCS, Fibromyalgia and Myalgic Encephalomyelitis. I fell seriously ill after travel vaccinations. I never reached India or trekked Nepal’s Himalayas, but toured a landscape of severe illness instead. It is only recently that I can take trips within the UK again. Even ill effects from yesterday will reverberate for weeks, requiring increased support and treatments to stabilise.
Florence Nightingale’s birthday highlights a spectrum of neuro-endocrine-immune conditions. The founder of modern nursing suffered a debilitating fatigue illness herself and is the chosen icon to raise awareness. It is an uncomfortable date for me to mark, but necessary. The ease of my backpacking days are gone but if this is what it takes to travel now, then my spirit is strong.
For more information on International Awareness Day, please visit the website. If you suffer from a neuro-endocrine-immune diseases, you can find support and forums on the following websites: