IMAGE DESCRIPTION: An image of Lesley and James in production of Location, Location, Location. Title: Location, Location, Location by Lesley Warren. The ME Association Logo (bottom right).

Appearing on Channel 4’s Location, Location, Location, while living with ME/CFS

Lesley who has ME/CFS and her partner James went housing hunting with the help of Kirsty Allsop and Phil Spencer on the Channel 4 reality property programme…

This feature article was first published in ME Essential The magazine for members of the ME Association

Written by Lesley Warren

As usual I was wide awake at 2am without much hope of getting any kind of meaningful sleep. In a moment of madness I pulled out my phone and I filled out the application form to get the help of Kirstie and Phil in buying our first home together.

The application was straight forward and I laid out plainly just how hard everyday life was for me now, and how difficult I was finding it even to attend viewings and read home reports. I attached a couple of photos of James and I, and gave a little bit of detail about what we needed, as well as what we wanted. Without too much thought I pressed send and attempted to get to sleep. James and I had decided a couple of years back that we wanted to buy somewhere together in Edinburgh, but the process had been far from easy.

Like every first-time buyer we were hit by interest rates that were continually rising, as well as competing in a market where cash is king, and bidding well over asking price is the norm. But alongside this, I was also battling ME. I’d gone from a very active lifestyle where James and I regularly spent our weekends climbing Munros, or running together to living much of my life in the confines of our flat.

My symptoms started gradually, and in the early months I was determined this was something I could train myself out of. I’d convinced myself that keeping healthy and active would help my body heal itself and I delayed seeking help for as long as I possibly could. After eventually biting the bullet, and following 18 months of tests, I was eventually diagnosed with Chronic Fatigue Syndrome. I did initially share my diagnosis with others under the term of CFS, but after many hurtful comments assimilating my debilitating symptoms to “tiredness” I then started using the term ME, and have done ever since.

The morning following my 2am moment of madness I confessed to James what I had done. “You did not?!” he said whilst also half smiling. It was something James and I had always joked about doing as the Edinburgh market is a nightmare even for those who are fit and well. “I can send them an email and ask to take it back if you really don’t want to do it”, I replied. “No, let's just see how we get on, we probably won’t be chosen anyway”.

“I felt from the beginning that there was a strong desire from the whole team to not only understand what I was living with, but to help me in any way they could.”

Like all good stories, that’s not what happened… A few weeks later, and several failed viewings and bids, I got a phone call. I was off sick that day and lying on the sofa when a very friendly voice on the other end explained that she was phoning from the production company that made the programme Location, Location, Location. I described at length about who James and I were, how long we’d been together, and why we needed help to buy our first home. James stood in the doorway trying to understand why this person, who he assumed was our solicitor, needed to know how James and I first met. From there the process took a few weeks.

We recorded a master interview about ourselves, our search, and critically, explaining what it was like living with ME. I felt from the beginning that there was a strong desire from the whole team to not only understand what I was living with, but to help me in any way they could. It was never articulated to me exactly why some people are chosen for the show and others aren’t, but they did explain that they always try to support those that need their help the most.

Filming is normally over three days, with one long day for “lifestyle shots” and the remaining two days for viewing and hopefully buying a property. Our filming was done over five days. This decision was made right from the start to ensure that none of the days we were on film started early or finished late. In total, we never filmed for more than 30 minutes without an opportunity to sit down and rest.

Each morning we were picked up from our flat and driven to each location. In the middle of the day we had the option to have lunch with the crew or to be driven back to the flat for a couple hours of rest before viewing a property in the afternoon – we took advantage of both options. Several members of the crew knew someone with ME/CFS or Long Covid and everything they did was planned around my illness.

They ensured that I felt comfortable asking for anything I needed, and I felt supported and understood as a result. We both owe a huge debt of gratitude to all of those behind the camera that made it possible for us to move into our perfect home. Three out of the four houses that we saw just weren’tright for our lives. They were either too small or needed too much work. Whilst this was disappointing it very much mirrored our own search. After the third property, James and I were feeling deflated. We never really wanted to be on TV, but we really felt that getting the help of Kirstie and Phil was our best shot at finally getting settled somewhere.

By the penultimate day of filming we almost resigned ourselves to not finding somewhere. That all changed on our last day of filming. Every time they brought us to a property they always parked around the corner so that we couldn’t see the flat ahead of time. They want to get your honest reactions on camera, and capture your unfiltered responses. Walking up the cul-de-sac of what is now our home, I immediately felt a sense of calm. The street was quiet, but also quaint, with lots of people and cats enjoying their gardens. There are a few steps into the property, which would be a challenge, but all of the living space was on the first floor. On my worst days, I can’t leave my bed, but even on the days where I could do a little more I wouldn’t need to climb any stairs. Most of the crew left us to look around whilst Phil waited for us in the garden.

“I had practiced talking about my illness with family and friends so that when it came to filming I could (hopefully) do it without getting upset. What I didn’t imagine was the huge emotional relief I would feel when we finally found THE ONE.”

I’d seen it from one of the windows in the flat, but had assumed that it was shared with the flat below. Phil then listed everything that the flat had to offer and then, with arms spread open, explained that the entirety of the garden was also included, and private to our flat, I just couldn’t hold in my tears despite desperately trying. In all of the pre-interviews I’d had with the production team, every time I talked about how my illness affected me I burst into tears.

Whilst being ill for four years, I was only 10 months into my official diagnosis and I was struggling with disappointment after disappointment. When I thought I’d sacrificed enough, I realised I had to give up yet more of what makes life enjoyable and I was only able to continue working based on the generosity and amazing flexibility that my employer offered – including almost exclusively working from home. I had practiced talking about my illness with family and friends so that when it came to filming I could (hopefully) do it without getting upset. What I didn’t imagine was the huge emotional relief I would feel when we finally found THE ONE.

Not only was this flat the best we’d seen with the team, it was by far the best property we’d seen at all. Thinking that we might not actually be able to secure it was too much. I cried so much they had to cut the filming to allow me time to recover. Early on in my diagnosis, I got some excellent advice: “Take all of the help that is offered to you, and even the help that isn’t”. We got the keys in mid-August and, with an incredible amount of help from family and friends, we have painted a few rooms and begun putting our stamp on our first home together.

We were in a rented flat before that was fully furnished so it’s taken us a while to buy the furniture that we need but it’s coming together slowly. The stress of moving home definitely set me back and I was off sick for a while as my body recovered. However, now that we’re settled, I can truly say it was worth it. Even on my worst days I’m grateful to be having them here, with James, who continues to be a beacon of kindness, support and love.

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