Coping Strategies

Looking for more information about coping strategies? Here are some additional optional resources for living with ME/CFS. They are prompts to help you.

There are no complete or definitive answers. Take your time to browse; choose just one area to explore at a time. We suggest where you can, keep other ideas and activities in your life besides health management to retain balance as best as possible.

Each topic has further practical tips in the download section. You are welcome to print any sheets that resonate with you. You can personalise them to suit your needs. It might be helpful to collate the ones you like in a folder to make your own personal Care Book for Living with ME/CFS.

The Corgi Scale – Somatic Recognition, Communication, and Planning

If you live with chronic complex illness and/or brain fog, these friendly corgis can help in three ways.

Somatic Recognition - In the brief moments you take to consider each corgi, it may be possible to acknowledge how you actually feel just now (stepping outside expectations, efforts to manage daily tasks and judgements).

Communication - You can use your chosen corgi to convey to others how you are feeling. Perhaps you can stick a printed one bedside, or a magnetised one on the fridge, then, if anyone asks how you are doing, nod or wave gently in that direction. (Some printable ones are included in the download).

Planning - Seeing a scale of images correlated with effort measures can help you decide and plan how much do in an upcoming session or during your day. Remember to always personalise scales to suit you and adjust mid-session when appropriate.

We hope the corgis (or another metaphor or an individualised impact scale as shown below) will resonate with you and be helpful.

Different Kinds of Rest

Rest is not just sleep. Rest is how we nourish ourselves, how we recharge, soothe and restore. It's about slowing down, taking some space, having a break. Rest is crucial for functioning. It is a necessity, not a luxury. Rest is both a prevention and a management tool and is valuable in short rest snacks or in longer practices. Our systems need downtime to recharge. Everyone deserves rest. Every body needs rest. Here is a brief outline of ideas for different kinds of rest: spiritual, physical, cognitive, and emotional. There is also space to reflect on how you find rest.

This worksheet has been developed by Rebecca Rae-Hodgson who navigates rest herself. Please kindly only use this for personal use and do not copy. You can find other amazing tools on her website.

Activities That Fill Me Up

Many things drain our energy, so it is important to focus on what fills us up as well. Research indicates that “Uplifts” or “Glimmers”(i.e. the opposite of stressors) are important for our quality of life, so let’s find the ones that help us enjoy the rest we need, find ways to calm, lift our spirits and gain balance.

For each of us, nourishment will be a unique set of ideas and activities. Here, we give examples of six areas you might like to consider when planning your ways to fill up.

Capturing Moments of Joy

How do we cherish our small victories and happy moments simply and without spending too much energy? The download offers some examples of activities and practices designed for capturing and remembering your moments of joy/strength/resilience.

It might be nice to try one it out for a couple weeks to see if it feels good. Alternatively, you can get creative and make something yourself to celebrate and remember the sparkling small moments as well as the larger events.

Self Compassion and Self-talk

We can’t think our way out of chronic medical illness but the way we talk to ourselves can have an impact on our wellbeing. A strong inner critic can add to stress and allostatic load. Here we look at gains we might make through enhancing mindfulness, self-kindness, self-respect, belonging and wholeness.

Flare Management

Knowing early warning signs and having strategies in place, can be really helpful when dealing with flares. It means you don’t have to generate ideas when you are feeling at your worst. Here we outline some techniques that can assist you up to minimise flares. Should a flare occur there are also tips with how to deal with them better.

Managing Wellbeing – The Traffic Light Code

Managing our wellbeing can sometimes feel like trying to hit a moving target. We may need different strategies for different states, days, events/activities, symptom levels etc.

The wellbeing traffic light is something Rebecca developed and uses personally to help stay in a relatively good zone and notice when she is managing well. It also addresses what it looks like and what helps when things are slipping or really bad. She has found having these written down meant that she didn’t need to remember them or generate ideas, especially when she was really struggling. The download provides her list as an example and then a template for you to come up with your own words for the different levels and what you might need at different points.

This worksheet has been developed by Rebecca Rae-Hodgson who navigates rest herself. Please kindly only use this for personal use and do not copy. You can find other amazing tools on her website.

Chronic Illness Metaphors

Succinctly explaining the reality of chronic illness to someone who doesn’t experience it can be really challenging. The corgi scale can help, or you could use one of these:

  • Spoon Theory (Christine Miserandino, 2003)

  • Spell Slots (lesbianspaceprincess, 2017)

  • Forks (Jen Rose, 2018)

  • Oxygen Tank (a previous psychologist of mine and me)

  • Animal Scales (various memes online)

  • Splat (Christina Irene, 2019)

Using one might help someone who is wanting to understand, to grasp the enormity and lets humour and the everyday steer a conversation towards sincerity and the unexpected. However, even with metaphors, it’s still really difficult for people to understand the daily reality of our experience when they have not felt it. The download notes explain how the examples work and raises some of the considerations to bear in mind in using this approach.

Individualised Impact Scales

Generic pain and fatigue scales can be presented to you in health care appointments and support settings with the aim of summarising your situation. Still, if you find them difficult to use, it may be because the numbers will mean different things to different people, the impact on functioning will differ and external expressions of pain might not be ‘typical’ or you may vary across days. You might consider augmenting these scales by creating an individualised scale to better understand your own experience or explain it to others.

You may try a metaphor, as described above, especially if your health practitioner is receptive. You can also add to your explanation by showing concrete examples of the impact on your functioning – what you struggle to do or miss out on because of pain or fatigue, ways to describe the extra time things take, and the supports that could help. This can make the numbers seem more concrete and meaningful. The download offers templates for starting your scale.

Sensation Words

A challenge faced by many people with ME/CFS, is that of finding the language needed to explain unusual symptoms, severity of fatigue or complexity of pain. This download gives a wide range of sensation words to help you when you are looking for descriptors.