Words by Tamsyn.
May is ME Awareness Month, so it felt only right for me to do a post about my experience of Wild Swimming with Myalgic encephalomyelitis.
I have had ME, also known as chronic fatigue syndrome, since a young age but was only officially diagnosed with it a few years ago. Things with my health started going wrong after I had pneumonia as a toddler, then at 11 years old I had an autoimmune disease (Henoch-Schonlein purpura), at 19 years old I had glandular fever (Epstein-Barr Virus) and then in 2018 I had viral meningitis. Since the meningitis my health really took a knock back but with a lot of personal research, trying anything and everything such as therapies including acupuncture, reiki, yoga, meditation, pacing, massage, supplements, cranial osteopathy, kinesiology and working with a brilliant nutritionist at The Optimum Health Clinic, plus cold water swimming I have started to make some progress and improvements.
What is ME?
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex multisystem neurological disease. It includes the dysregulation of the nervous, immune and endocrine system, with impaired cellular energy metabolism and ion transport.
It is estimated to affect around 0.2-0.4% of the population in the UK, around 250,000 people.
There is a wide range of severity, with around 25% of people being housebound or bedbound.
It is a fluctuating condition, so that symptoms can not only vary from day to day but hour to hour which makes it very hard to plan a life around with never knowing how you are going to feel.
Despite the name of the disease, Myalgic encephalomyelitis/chronic fatigue syndrome, is not just about having severe fatigue, there are a wide range of symptoms which vary in severity from person to person, but some common ones are:
- Post-exertional malaise (PEM) which is when you get a worsening of symptoms after even minimal physical or mental exertion, which can be delayed for 24-72 hours or more. Meaning it is often hard to figure out what has caused a relapse in symptoms as they can occur the next day or even three days later.
- Flu-like symptoms including sore throats, swollen glands, headaches, fever-like sweats, lethargy
- Sleep problems - unrefreshing sleep, sleeping too much or too little, vivid-dreams
- Cognitive dysfunction or brain fog - problems with short-term memory, concentration, finding words.
- Orthostatic intolerance - problems with pulse and blood pressure control leading to feeling faint/dizzy when upright.
- Pain - which can involve muscle, joint and nerve pain
- Temperature control - not being able to regulate your body temperature so not being able to cool down in hot climates and the inability to get warm when cold
- Sensitivity to light and sound
- Gastrointestinal symptoms
My experience of Wild Swimming with ME
Photo by Jo Clement
Myalgic encephalomyelitis is a complex illness and it can be different for each individual, so the following is my personal experience. I am currently living with a mild form of it and I realise how lucky I am to be able to even leave the house, let alone get in the water and swim.
With an energy limiting illness it is often a challenge to undertake an activity such as swimming which in essence uses up your vital energy supplies. So before I embark on an outdoor swim session I have to access my energy levels and decide whether I have enough to be able to go for the swim. Sometimes I will have to adjust other activities in my day in order to be able to undertake the swim. For example, I can sub having a shower (an activity which depletes my energy quickly) for a swim, or choose a more accessible location with a shorter, flatter walk to the water entry point. Or go for a swim earlier in the day so I can rest in the afternoon, or plan to have restful, home bound days either side of my swim days.
There is a lot that goes on behind the scenes of incorporating open water swimming into my life and often the facade of all the fun filled idyllic shots you see on social media is only the half of it.
Being able to get in the water whilst managing a chronic illness is such a privilege, and I never take for granted each swim I have. This makes it even more special and every time I am able to feel the cold water on my skin and be surrounded by the nature around me is a moment I treasure.
Everyone is different and what works for one person does not for another. Comparison is the worst, so I try to focus on what I can do and not compare myself to others who are swimming long distances or triple dipping in a day!
One of the hardest parts for me is when in my head I’m so desperate to get in the water, it’s a sunny day, the sea is clear and calm but my body feels like I’m wading through treacle. I have to accept the fact that on those days I simply cannot do it, that rest is best and my time will come again. On those days the FOMO (fear of missing out) is real and a tough pill to swallow.
How do I manage it? It is a delicate balance between expending the energy to swim and having enough fuel in the tank to get through the day. Pacing is key with an energy limiting illness such as ME but it is often the hardest thing to master, something I am still learning to do! I feel I am constantly living between listening to my body and not letting my illness control my life, a seesaw which keeps tipping from one to the other.
This is something that has been going round my head for a while now, what are the benefits that I personally get from wild swimming and cold water exposure? There are a variety of proven benefits from cold water swimming which I am not going to go into here, but rather I wanted to share with you how it has personally helped me.
1. Makes me realise how strong my body can be.
For so long, I have had this perceived image of my body as one that is broken or dysfunctioning. Throughout my life my health has been a struggle, forever getting knocked back by various viruses, always feeling unwell, having no energy. In my eyes I felt my body was constantly failing me, it didn’t function the way it should so I’ve often lived in fear that it can’t cope. So when I go for a dip in the cold waters, my body is put under some stressful conditions and amazingly it copes with it and this is something that has allowed me to see my body in a different light. So now I have faith in not only myself but in my body, it has an innate ability to heal and it works hard to keep me safe.
2. Makes me feel alive.
There is nothing quite like that moment you first immerse yourself in the silky, cold waters, the icy sensation spreads over the surface of your body making every hair on your skin stand to attention. To me, it feels like a reboot, restarting my system up and kick starting it to life, whereas so often my body feels the opposite. With the fatigue and other symptoms I encounter with ME, I can often feel like a walking zombie, or trapped in a body with a faulty battery. Cold water immersion makes me feel alive again, it gives my body a boost that I have not experienced in any other way.
3. Forces me to be in the moment.
Living with a chronic illness is exhausting, you are constantly questioning everything you do and having to plan for the worst case scenarios. “What if I don’t feel well when I’m out, can I get home easily”, “I did that thing two days ago, what if my symptoms start to flare when I’m out and I don’t have the mental or physical energy to safely get home to bed”, “what will people think of me if I cancel YET again”.
I always plan ahead thinking about all the different scenarios that could happen as it’s so easy to go about our days not really being in the here and now. However, once in the water all those thoughts dissipate, it's as if all that ‘noise’ in my head has been turned down. The main things I focus on when getting in the water are regulating my breathing, taking deep slow breaths and feeling the cold sensation rush over my body. Once I am fully submerged and my body is over that initial cold water shock I can relax a little, float on my back, dive under the water, do some breaststroke, have a chat with my swim buddy or take in the nature around me.
Go Blue for ME challenge
The ME association are running the #GoBlue4ME challenge and The Wild Swim Store are calling upon all of you lovely wild swimmers to help raise money for the ME Association.
How to get involved:
1. Go for a wild swim
2. Take a photo and post it to your social media making sure you tag @thewildswimstore and use the hashtag #GoBlue4ME
3. Tag 3 friends in the post to do the same challenge
4. Donate £5 to the ME Association - click here to go to the fundraising page.