​What is EDS?
Ehlers-Danlos Syndrome (EDS) is a group of 13 inherited connective tissue disorders that affects the connective tissue in the body (Ehlers-Danlos, 2024). Connective tissues are important to provide strength, elasticity, support, and protection in our body’s skin, joints, blood vessels, and other organs. Each type of EDS presents with its own diagnostic criteria, but common characteristics include joint hypermobility, skin hyperextensibility, and tissue fragility. Consequently, people with EDS often present with hypermobility, skin that bruises, tears or scars easily, chronic pain, fatigue, and issues with their blood vessels and organ functioning. It is difficult to know how many people have EDS, but estimates suggest that it affects 1 in 5000 to 1 in 20,000 people worldwide. Hypermobile EDS is the most common type and accounts for approximately 90% of EDS cases.
Pain is unfortunately common with EDS from the overload of musculoskeletal structures and abnormal movement patterns due to joint instability. Central sensitisation can occur too resulting in people with EDS being hypersensitive to painful stimuli (Ehlers-Danlos Society 2022). Fatigue is also extremely common and can be due to a dysregulation of the autonomic nervous system, for example low blood pressure with a fast heart rate, and gastrointestinal problems. This can all lead to a decreased exercise tolerance and difficulty performing daily tasks. Psychological symptoms such as depression, and anxiety are also common co-morbidities (Ehlers-Danlos Society 2022). 

​Whether you're a sufferer or a carer of someone with severe chronic fatigue syndrome (ME/CFS), long COVID or another debilitating chronic illness, you know how it robs quality of life. 😞
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With 25% of chronic fatigue syndrome sufferers being so sick they are housebound or bed ridden, it means that many people are limited in their ability to implement self-care strategies that others may take for granted. Things such as going for a walk or having coffee with a friend. To complicate things further, symptoms such as light sensitivity, noise sensitivity, food intolerances, brain fog, pain and mobility issues can make it hard to engage in some activities.
 
DON’T DESPISE THE SMALL THINGS
Finding small things you can do to bring some joy and calm into your day is essential. Think of these activities as tiny top ups to fill your cup.
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Below are some ideas that can really help people get through a day. Obviously, everyone is different and depending on your symptoms and severity some of these may even seem like too much. It’s important to give things a go (perhaps with the help of a carer) and find what works for you. 💙

​Pacing is the term given to the strategy of managing fatigue and other symptoms in chronic conditions including post-viral fatigue, Long Covid, fibromyalgia, chronic fatigue syndrome (ME/CFS) and many others.
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What this looks like can be slightly different for everyone, but it essentially means being strategic about how you coordinate your life scheduling rest around activities and listening to your body, stopping before your body reaches tipping point. This requires understanding your baseline (which can unfortunately fluctuate), recognising your triggers and structuring your day, week and even month accordingly.

The idea with pacing is to be one step ahead of your body to avoid flares and reduce the severity of post-exertional malaise otherwise known as PEM. PEM is a delayed exacerbation of symptoms (especially fatigue) that occurs in response to mental or physical exertion. For example, having to go out to a doctor’s appointment and doing a load of washing in one day could lead to a significant worsening of symptoms in the days following before returning to baseline. Some of you will know this pattern all too well! 

So, how can you get the most out of pacing?
Here are my 3 top tips for effective pacing.

Dysautonomia is the inability of the autonomic nervous system to regulate itself and is a common feature of Chronic Fatigue Syndrome (MECFS), Postural Orthostatic Tachycardia (POTS), Fibromyalgia and Long COVID.
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The autonomic nervous system consists of the parasympathetic (relaxation) and sympathetic nervous system and controls involuntary actions in the body including heart rate, blood pressure, digestive and bladder function. When the autonomic nervous system is constantly out of balance it can leave people with some debility symptoms which severely impact quality of life.