Living with ME – Like Always Being in Lockdown

My son and I joined St John’s and St Mary’s church over 5 years ago and the community now feels like family. Some of you may know that I suffer from the chronic illness M.E. The restrictions of having a chronic illness are actually like being in lockdown 24/7. For me it has been 30 years and counting. Looking into other people’s adventures from the outside, always a spectator, rarely able to take part.

Since lockdown, I have been in the unusual position that in day to day life, things have actually hardly changed. That’s how isolating and housebound chronic ill health can be. It is not like being on holiday, it can be heart-breaking as you lie in bed in pain, often hardly able to move, watching your life go by. People often talk about living life to the full, when for some of us, having a shower can be an achievement! I try to find the positive and have always been able to enjoy music, comedy, crafts and contact with friends and family, together with my faith. My greatest blessing is my teenage son. I happily prioritise my strength for him. I need a lot of rest and sometimes need to use a stick, but I do have pockets of good health where I can be a part of things. 

At this current time we have various ways to connect and worship online, all of which I know we are thankful for. I love being able to be part of the Alpha course and book club and to listen to a lot of the services, some of which I am only able to take part in because they are online. To be able to still connect and join in with others is great, where otherwise I would not have been able to. The limitless supply of worship, music, comedy, plays etc, available online now has been an incredible blessing particularly for those of us with chronic illnesses.

Mary Manthey-Steel

The 12th of May was M.E. awareness day. You can find out about the condition and support available at