“Life with M.E.” – Reflections on the last year

( This article was written for my local church’s parish magazine. I don’t often mention church, or God, in my writing as I know not everyone believes. However, joining my local church and attending weekly services, has massively helped me in coming to terms with M.E. I have met some really lovely people there and when I was asked to write for the magazine, I (metaphorically) jumped at the chance to say thank you to all of them. )

A year ago, things were very different to how they are now. As this magazine goes to print, it will mark one year since I fell ill. You may know me from church; I’m the one in the wheelchair at the back. Sometimes I’m strong enough to turn up using just my walking stick, but for the majority of the time it’s powerchair and me, joining the congregation in weekly prayer.  

You see, prior to getting ill a year ago, I was an active, relatively healthy person. I had spent 10 years as a primary school teacher and had just returned to work from a year’s maternity leave. Despite living with sleepless nights and everything that life with a new-born involves, I’d think nothing of attending back-to-back baby classes with my daughter Evie and think nothing of walking to and from town a mile and a half each way. Walking was one of my main hobbies and I walked everywhere. I had more energy when Evie was tiny than I do now. 

Related: Mummying and M.E. – My M.E. Story

November 2018 was when it all started going wrong. One chest infection after another, each sending my asthmatic lungs haywire, put me in hospital on nebulisers and intravenous medicine. I have never recovered. 

Slowly but surely over the last year, I have lost my mobility, my walking limit now around 20 metres. You’ll often see me wheeling through Southdown on my hired powerchair, but for the majority of the time, I’m lying down on the sofa, laptop on, and writing for my blog. Funnily enough there aren’t many jobs one can do while lying on the sofa, but blogging is one of them. I set up Mummying and M.E. (www.mummyingandme.com) to document my life with M.E. but particularly getting used to life in a wheelchair. 

Related: Mummying and M.E. – Life on Wheels

Related: Mummying and M.E. – 6 Things I’ve Learnt Since Using a Powerchair

But what is it that living with M.E. actually involves? Contrary to popular opinion, M.E. is not simply “being tired all the time”. While fatigue is the main symptom, this is not the same as “being tired”. M.E. is a multi-system disorder, with medical professionals not yet able to pinpoint an exact biomarker for. That is, there isn’t yet a specific blood test to diagnose the condition. Diagnosis is made on studying a patient’s symptoms: post-exertional malaise (feeling significantly more unwell following any type of exertion), a clear starting point to the fatigue, muscle or joint pain, constant sore throat, flu-like symptoms, headaches, sleep problems, and problems thinking, remembering or concentrating. The combination of symptoms to each individual is different, with each person having more significant symptoms than others. 

Related: Mummying and M.E. – What is M.E./CFS?

One may think this all sounds terribly depressing and how could one possibly find the mental energy to keep going? Well strangely enough, I can. Through church and the support from the congregation and ministry team, I have found a sense of peace I could only ever have dreamt of. There’s no sugar coating the fact that living with M.E. is not easy, each and every day being a challenge, but finding God through church has made it all ok. No matter how bad each day gets (and boy do the days get tough when your legs decide to stop working) I always know God is there and when I turn up to church on Sunday, I will face the most friendly, kind and generous group of people I’ve ever met. 

Related: Mummying and M.E. – Things I’m Grateful for This Week

To each and every person who simply just gives that smile each Sunday, thank you. And if I haven’t met you already, look out for me round the area, my powerchair is one not to be missed. 

Until next time,

mummying and me

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