Multiple Chemical Sensitivity and the travel accommodation lottery

Multiple Chemical Sensitivity and the travel accommodation lottery

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.

“Yes.”

“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.

By Juliette

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:

The Environmental Illness Support

Multiple Chemical Sensitivity

Allergy UK

 

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  • Ei Crusade
    • Juliette Llewellyn

      Thankyou Ei Crusade & for link to information on Multiple Chemical Sensitivity and Electro-Hypersensitivity in US. I also have EHS too hence my delay in replying. I will have a read.

  • Villa Carpe Diem

    Awareness raising from necessity. Juliette has brilliantly conveyed some of the challenges raised. We would like to ensure that we can reasonably offer Villa Carpe Diem to people with Multiple Chemical Sensitivity. Would Juliette share her advice on how we might best prepare? Thanks again, Andy

    • Juliette Llewellyn

      Thankyou Andy for your kind comments. It is very heartening to read your willingness to learn about Multiple Chemical Sensitivity. I am in the process of writing a reply to your question. It may take a little while as I am only able to spend limited time on computers etc.

      • Villa Carpe Diem

        Hi Juliette, thank you for your positive response. I look forward to reading your advice in due course. Best regards, Andy

        • Juliette Llewellyn

          Hi again Andy, due to circumstances beyond my control I will be offline until July. I will complete my reply to you once back online and post it here then. Apologies, all best and look forward to speak then. Juliette

          • Hi Juliette, thank you for taking the time to explain that you will be offline until July. Feel free to take as long as you need to complete your reply. I appreciate your apology but really there is no need for you to apologise. With best wishes, Andy

          • Juliette Llewellyn

            Hi again Andy,

            thanks for your kind reply, I appreciate it. I am online again now.

            Your question touched on a subject I have been thinking about for some time. I have just posted a response on preparing for an MCS sufferer’s visit under Proprietor’s Guide on my Sensitive Travel blog. All main points are listed here:

            https://sensitivetravel.wordpress.com/proprietors-guide/

            I have also taken a quick look at your website. Villa Carpe Diem looks a beautiful place and both you and Niki sound considerate hosts. You have put a lot of thought in to making your villa accessible to those with mobility difficulties.

            Below are some observations specific to your property not covered via my link. They will make sense after reading my general response first.

            Warm Wishes,

            Juliette

            Villa Carpe Diem

            Accessible Master Suite

            • Your accessible suite can work for a sufferer. Potentially providing a safe haven to recuperate. Also other conditions can often be present with MCS, like ME / CFS or Fibromyalgia, which involve fatigue. So a sufferer will not have to share facilities when exhausted.

            • Access to own washing machine and bathroom facilities help in controlling a sufferers immediate environment in relation to products.

            • Some need to use a wheelchair so an accessible flat will help.

            • Easy access in and out of the flat and to the terrace / pool helps when mobility is limited. Anything that can reduce the need to walk far or climb many steps is good.

            • Tile and stone flooring is beneficial for sufferers.

            • Theraposture profiling beds could help with bed rest on less mobile days. Although a memory foam mattress may be problematic for some sufferers. Once outgassed it may be okay. Note the date you had the mattress.

            Main House

            Or you may decide to use a bedroom in your main house:

            • The bedroom with a sea view (although all views are welcome) and balcony access, is helpful for less mobile days.

            • Again a memory foam mattress may be problematic for some sufferers. But once outgassed may be okay (see same point in accessible suite).

            • Reclining chairs, ipods (for relaxation music) in lounge aid rest.

            • Use of dishwasher facility in kitchen is helpful for managing fatigue.

            • Some guests may have Electro Sensitivity and request WIFI be turned off for their visit (if they are with their own party).

            Outdoor Space

            • Your sun terrace, sea and countryside views, private garden and outdoor seating is ideal. Sufferers often need rest at home between trips out and some may need to base their time entirely around the property.

            • Your salt water pool, free from chlorine, sounds restorative. A good point to highlight as detoxifying helps sufferers. Note if there are any chemicals in the pool.

            • Sun loungers can aid necessary rest by supporting the body.

            • The villa’s quiet location is a plus and the close drive to the sea.

            Nearby Area

            • Being met from the airport will help.

            • Also being able to discuss arranging any care required during a stay.

            • The nearby market garden is good as sufferers often eat local (and organic) produce, due to less pesticides.

            • I imagine being on a small island and near the sea means clear air quality. This is worth emphasising.

            • The option of vehicle hire for trips out helps as ability to use public transport can vary.

          • Hi Juliette, many, many thanks for the work that you have done evaluating our Villa and coming up with suggestions as well as your detailed Proprietor’s Guide. Once we have digested what you have had to say we will be working to incorporate your advice. I’ll let you know about our progress! A quick mention as well to the guys at Disability Horizons who facilitated this connection. Good work as ever from a great team! Best regards, Andy

          • Hi Juliette, many, many thanks for the work that you have done evaluating our Villa and coming up with suggestions as well as your detailed Proprietor’s Guide. Once we have digested what you have had to say we will be working to incorporate your advice. I’ll let you know about our progress! A quick mention as well to the guys at Disability Horizons who facilitated this connection. Good work as ever from a great team! Best regards, Andy

  • Juliette Llewellyn

    You’re very welcome Andy and all sounds very positive. I will definitely look forward to hear how things progress with your Villa. Yes, I agree, many thanks to the Disability Horizons team who have made it all possible. Disability Horizons does a lot of excellent work, making the invisible visible. Warm wishes, Juliette