Personal Story: Trevor R

Building accommodation suitable for ME/CFS.

P/C Taylor Ryan 960 x 960

Living with and caring for our adult daughter Taylor for five years as she has deteriorated into severe ME/CFS has taught us much about the relationship between the illness and the built environment. We could never have envisioned that moving her into our newly renovated main bedroom and ensuite would become her world for many years. Although we designed the area to suit our needs at the time, it falls well short of an ideal environment for someone who is bedbound and trapped within its four walls 24 hours a day for years on end.

After much research and considering the ever-evolving requirements and future needs of severe ME/CFS, we have decided the best solution is to build Taylor a house of her own on the same block of land. This will provide a purpose-built design tailored to her current needs and flexible enough to change when required. The separation from the existing house will allow Taylor and us to use our own spaces as we want, without disturbing the other, while still close enough for security and daily care needs.

The design has evolved over a few years of planning and revisiting various concepts. We now have a very simple layout with a large bedroom as the main room at the centre of the house with views to the south, providing a larger feeling of space without direct sunlight. The kitchen and bathroom are off this main room and easily accessible.

There is another 'treatment room' connected via a breezeway/entry which will be a space for Taylor to retreat while cleaning is taking place in the main areas, or when having any type of treatment or therapy. This area could also be used by a live-in carer if required. The separation of the treatment room means that the main living space will not be polluted by smells or perfumes, etc. from any visitors.

As much of the environment as possible will be controlled remotely from the bed. This will include windows and doors, curtains, lights, heating and cooling, security. Materials and finishes will be the best we can find to limit chemical emissions and require little maintenance.

We are still finalising plans and hope to start building early in 2021. Hopefully some of the ideas we are employing will be useful to others in a similar situation.

Last edited: 08 December, 2020