Cold water and ME

Remember those water safety videos shown in schools? Well, they were probably aimed at me - but I ignored them. I was that kid jumping in dirty canals and swimming in deep reservoirs all through the school holidays. Water has always drawn me in. From Llyn Peninsula camping holidays, jumping off breakwaters into the sea and spending hours body boarding (other people had wetsuits on but I was happy in speedos, not even noticing the cold) to walks with family where I would always seek out river or lake to get into.

In 2019 after signing up for the Abersoch Triathlon, I joined an outdoor swimming club at Todbrook Res in the Peak District. I met many characters there, all ages, all different sizes. Swimmers who were of an age where they could move with more ease in the water, than out of it. I felt a bond with this group of people straight away.

Fast forward to the Triathlon in June of that year. I was taking part with a group of friends and it started well, with a sea swim of a mile. I felt great. Next was the bike challenge and it was here I began to feel that something had taken the energy from me. Others contenders cycled past me with ease and I was falling behind. My breathing was erratic and I struggled to catch it; it was as though there wasn’t enough oxygen for me to take in. I had heart palpitations and, while still trying to keep going, I was trying to work out if I was having some kind of panic attack – or worse. I tried to carry on – pretty typical of me. The previous weeks of training with mates gave me no reason to think I couldn’t complete the challenge. After one circuit of 20 kms, I had to stop. Tears running down my face, I picked up my bike and chucked it into a bush. I laid there on the roadside watching people go past until some time after I gathered enough energy, and breath, to cycle back to the start line.

After the triathlon, the group I was with, plus those cheering us on, gathered together at the campsite for a BBQ. I laid out on the mat and slept for hours – all while the party went on around with people stepping over me. I clearly knew something wasn’t right. My body wasn’t working or performing the way it had for the past 35 years of my life.

Cue lots of trips to the GP. I won’t go into the detail but after a lengthy process of elimination, I was given the diagnosis of Chronic Fatigue Syndrome (CFS). If you know someone with CFS/ME it’s possible to have some insight into how they live their lives. Unfortunately, most sufferers disappear from regular life because of its debilitating nature. While I’ve done what I can to resist the worst of it, sometimes there really is no other option but to stay in bed, be still, rely on other people to help me out – and not work.

I had a full-time plumbing business working six days a week, ten to twelve hours a day. I thrived on working hard and I thought my body could cope with anything physically. In May of last year, after 14 years, I finally had to give in. After trying a myriad of different ways to keep my business going I had to close it.

This is not a sob story, or written to elicit sympathy. I refuse to let the illness define me. I’ve made changes to every single part of my life; including the town in which I live (moved an hour away), how I get around (wheelchair/scooter), how I socialise (er, not much). There is no cure, no medications offered to help manage – other than anti-depressants. I have tried nutritionists, holistic therapies, specialist clinic practices, sleep routines, many, many supplements, body work, breathwork, whatever I have been able to find out about.

What these explorations has led me to is a clear routine of what, I now know, works for me daily. Mediation, journaling (if you knew me at school this would make you laugh), gluten and alcohol (most of the time) free diet – and coldwater immersion.

After being a house owner, I’m now living in a shared house full of creatives. It’s given me a new view on life. The rhythms of my housemates are very different to a 9-5 existence. There’s always someone about to have an interesting conversation with, someone preparing food, someone making music, Plus there’s a big barrel of cold water in the garden.

Being in a valley, there are plenty of reservoirs and rivers to get into not far from the house. I like nothing better than getting into a fast-flowing river; the colder the better. I’m happy do it in all seasons and just in shorts - sometimes wearing nothing at all. But most places to dip aren’t easily accessible, so the visits can be weeks apart, until I’m feeling strong enough to get from the car to the water.

The water gives me a break from ME; from the monotony and suffering pain. My mental health has taken a knock. Going from a person never still, to not being able to move my body, for days sometimes, was always going to have an impact. The water makes me feel free of the illness. For that brief moment, I’m back to who I was. The cold makes me feel alive and takes over any other feelings in my body and mind. Being fully submerged feels incredible.

I have read a lot about the vagus nerve and its effect on our bodies. Apparently, immersing my forehead, eyes and cheeks in cold water decreases my heart rate, stimulates the intestines and turns on the immune system. It not only feels good, it’s proven to be doing something good. I wake up with heart palpitations and feeling anxious most mornings but when I can make it into the barrel first thing, I start the day in a better way. I feel calmness and I also rest easier following the experience.

ME/CFS has completely destroyed my life as I knew it. But in this, there has begun a new way of existing. I’ve been forced to slow down; I’m not living at 100mph anymore and there’s plenty of good to come from it. I’ve re-framed my future and it’s one I’m looking forward to. It’s given me the chance to be more creative, and I notice the beauty and detail in life. It’s certainly taught me a lesson. When I do beat this thing – I’m positive about some kind of recovery - I am in a better position to know what I want. It won’t be material things or a constant strive for perfection which was a driver of much of my previous existence. Give me family, friends, connection, nature – and wild swimming… lots of it.