this talk: is about the reality of living with ME/CFS - by Savannah Seymour

To honour ME/CFS awareness day, I thought this was the right opportunity to share my story as I am starting this new chapter of visibility and truth. For those of you who are new to ME/CFS, who don’t know what it entails and do not know anyone in their life who suffers from it, it’s a difficult disability to explain. For a number of reasons (underfunded research, only small-scale studies, vague/common symptoms), ME/CFS is a bit of a mystery, not only to those who have it, but also the medical community who seek to treat it. 

This diagnosis can look and be worn differently by everyone, and so finding genuine routes to recovery isn’t straightforward. In my small amount of independent research, some have found recovery through dietary changes and slow incremental graded exercise, others found it in supplements and listening to their body, and others (like me), are still in the battle field with no idea who we are fighting, let alone how to win. 

For those of you who know me personally will know how much I loved my previous life; I have a huge appetite for travel, I have endless time for my loved ones, and I put an obscene amount of energy into basically everything I do. To think and reflect on where I was in 2015; I moved half-way across the world on my own to start a new career and life for myself with almost no support system. I interviewed for jobs in a city I had no experience of, I met strangers in local coffee shops, I took solo road trips to explore that part of the world without thinking twice. As I recall those wonderful moments, I can’t help but feel slightly sad and nostalgic of who I used to be.  

So, what does ME/CFS mean for me? Well, if you have ever experienced coming down with the flu, you will know exactly what my day-to-day looks like. This involves a fluctuating fever, sore throat, overwhelming lethargy, body aches/pains, cognitive difficulties, regular migraines, light sensitivity and post-exertional malaise (PEM). For someone who had a full sports scholarship to attend high school, the idea that my physical exercise would become as limited as it is was probably the most difficult symptom of all to come to terms with. For most, moderate exercise will give you some lactic acid-induced aches and some tiredness. But, for myself and others with PEM, even a small bit of exercise (such as walking up the stairs) can send us into a crash, which is a paralysing crash in energy and ability to resume daily activities. It’s a resurgence of other ME/CFS-related symptoms. It’s another day in bed. It’s another day we miss doing the things we love with the people we love. 

With covid being at the forefront of everyone’s minds, I can’t help but join the chronically ill and disabled community in reflecting on what isolation means to us. Staying inside for days or weeks on end isn’t new to us. Missing out on seeing friends and family isn’t something we have had to adjust to in the last few weeks. Our lives being on pause with the glaring uncertainty of when things will get better isn’t novel. It’s exactly what we know. As we come to understand more about this virus, and with more and more people on their road to recovery, ME/CFS has become a discussion point nationwide as we are grappling with the possible long-term effects of contracting and recovering from covid. The point is this: we absolutely have to look after ourselves, we have to stop pushing ourselves when it’s going to set our health back, and we have to honour our bodies’ need to rest and recover in this post-virus landscape. Failing to do so will mean millions more people will inevitably join this community – as wonderful and supportive as the community is, it’s our duty to take sensible steps to prevent more individuals falling victim to ME/CFS, and this starts with an awareness.