Recovery from Chronic Fatigue and the Importance of Resources

by Viola Sampson

The Fulcrum, Issue 55 Winter/Spring 2012

Over the past few years, working with clients who have chronic fatigue conditions such as ME/CFS, fibromyalgia and post-viral syndrome has required me to refine my craniosacral skills and broaden my approach. Despite the positive developments in recent years – greater recognition of these illnesses, earlier diagnosis and encouragement to take time to rest in the first few months – GPs often say that recovery is unlikely, and this can be received as a semi-death sentence. People do recover from chronic fatigue conditions, although it can take several years. The process through illness, recovery and reintegration into life has distinct challenges at each phase that require very different sets of resources and therapeutic support.

In my experience, clients with fatigue conditions typically respond well, at least initially, to craniosacral therapy. After a few sessions, they are often better able to rest, enjoy improved sleep, and report decreased hypersensitivity and fewer aches and pains. However, energy levels and resilience build slowly and, after these initial changes, the long, often painful, journey through recovery begins.

A multi-disciplinary approach is often needed and a good referral network has been valuable; herbalism, psychotherapy and homeopathy have all proved beneficial alongside craniosacral therapy. I refer only to practitioners with experience working with clients with fatigue conditions, as there are sensitivities particular to these conditions that often mean people respond in unexpected ways to treatment. Even gentle interventions can cause severe relapses, especially when the client doesn’t have the resources to respond and integrate the changes. Occasionally, and with the client’s permission, working in collaboration with other practitioners has been effective. I also draw on my own experience of fifteen years of ME and recovery. Sharing my personal experiences at times has been supportive to those living with this confusing and little-understood condition. This work is challenging in many ways, and regular supervision has also been vital. These are usually long-term clients, often requiring weekly or fortnightly sessions, and attention to the therapeutic relationship has proved significant.

A primary theme in this client group is chronic sympathetic activation, together with a severe depletion of resources. This seems to be the foundation of a vicious circle that helps maintain the painfully unchanging picture that characterises fatigue conditions. Our most fundamental
resource is our health, and energy to heal. But for many people with a chronic fatigue condition, their energy levels are emotional resilience and coping strategies are stretched, and activities and friendships that used to nourish them are no longer accessible. With their resources so severely diminished, accessing a parasympathetically-dominant healing state becomes increasingly difficult. Support, space and time on the treatment table to drop out of sympathetic activation is perhaps one of the most fundamentally beneficial aspects of craniosacral work for these clients, but finding ways they can access a healing state in between sessions is essential. An important, practical part of my work has been helping clients develop a sense of their resources.

In this article, I will share practical tools that people have found helpful over the years, both with this client group and with people with other chronic conditions. The concept of resources – anything that makes us feel good, safe and able – is an important one because once a client knows what their resources are, how to use them and why they need them, they can support themselves through their recovery process. It’s also worth knowing that a conscious appreciation of resources can boost their supportive effect.

Clients need to be feeling well-resourced in order to heal. If, like most people who get ME or chronic fatigue, a client has less enjoyment in life, then their capacity to heal will be even further reduced than when they began to get ill. Helping clients find new ways to relax, feel good and have enjoyment in their lives can be fundamental to their therapeutic process.

These new ways may look very different from their previous activities, or they may be activities that they have modified to be more manageable. For example, if someone used to spend Saturday mornings working out in the gym, they may find they can still manage a short swim. Others reawaken old interests that might have been neglected due to a busy life, such as listening to folk music or watching garden birds. As with all resources, the strategies and practical tools clients find to support themselves through recovery will be particular to them – and their needs will change over time.

THE ROLE OF STRESS

Stress and anxiety are symptoms of fatigue conditions, as well as a maintaining factor, and are likely to have been part of the cause. The body’s response to stress underlies many of the symptoms common to people with chronic fatigue conditions. These include sleeping problems (waking early, difficulty getting to sleep and unrestful sleep), digestive issues (such as diarrhoea or IBS-type symptoms), muscle pain and tension (especially neck and jaw pain) and reduced immune responses, as well as feeling overwhelmed and some bouts of fatigue that have sudden onset – ‘crashing’. Of course chronic illness is stressful in itself, and many of these symptoms accumulate over months or years of living with a fatigue condition.

Recovery from ME and chronic fatigue is only possible when stress levels decrease enough for the body to access its healing state. Much of my work with this client group involves supporting them to find ways to decrease stress levels to allow the body to access healing. Developing a sense of resources is vital to this aspect of recovery, although developing resources means much more than stress reduction – in the same way that generating financial wealth means more than reducing debt.

With some important differences, fatigue conditions appear physiologically and psychologically similar to post-traumatic stress disorder (PTSD). The presence of shock and the simultaneous activation of both branches of the autonomic nervous system are common. This is the freeze/flop response of a person whose resources have been overwhelmed, like the response of the mouse who feigns death when caught by a cat. For many sufferers, a traumatic incident triggered the onset of fatigue. For others, the illness caused radical changes in lifestyle, social interaction and ability to work, all of which in themselves can be traumatic. Furthermore, limited resources, including reduced cognitive function and decreased physical ability to fight or flee stressful situations, can mean that day-to-day events and responsibilities are experienced as overwhelming. Skills for working with trauma have been crucial. Occasionally I have wondered whether certain clients would have been more accurately diagnosed with PTSD.

Anyone living with ME or similar fatigue conditions will already have useful coping strategies  in place to help manage the emotional and physical aspects of the condition, and it can be valuable to affirm and support these. However, for almost all people with fatigue conditions, new ways of managing stress, together with a refreshing of old skills, are key to recovery. Skills and techniques to change from a stress state to a relaxed, healing state are central to many approaches that are now becoming common in the treatment of fatigue conditions, such as cognitive behavioural therapy (CBT), Emotional Freedom Technique (EFT), the Lightning Process or related neuro-linguistic programming (NLP) approaches.

Developing a sense of resources – and using them – is an effective way to manage stress levels. It also helps build a sense of resilience so that day-to-day stresses are less likely to be experienced as traumatic, and it supports the client through their therapeutic process so that they are able to integrate the changes.

DEVELOPING A SENSE OF RESOURCES

A resource can be a skill or a character trait, or something that enables someone to use that skill or express a particular part of their personality. A resource can be very simple, such as the colour of a flower or good food; or it can be  more elaborate, perhaps a routine or a
relationship. Positive psychologist and addictions specialist Chris Johnstone breaks down the concept of resources into strategies, strengths, resources and insights (natural anti-depressants!).Strategies are things we do, strengths are personal qualities we draw upon within us, resources are what or who we turn to, insights are forms of wisdom that help, such as ideas or ways of looking at things. Examples of each of these might include: sticking your head under the duvet or talking something through with a friend; stubbornness or pragmatism; a good book or local park; and knowing that everything is impermanent or that every cloud has a silver lining.

Listing resources
I have found it’s helpful to encourage clients to make a list of who and what they turn to for support, nourishment and inspiration, and what they consider to be their personal strengths and skills. They may choose to write headers to several columns titled, for example: resources within me, resources in my home, resources in my community; or strategies, strengths, resources and insights.

Using hindsight
Using hindsight can increase a client’s understanding of their resources. I might ask them to think of a time in their life that was challenging, where they coped really well. What were the things they did that helped, what was around them and what did they draw upon at the time? It is often worth adding these to their list of resources. I also look at whether they have access to these resources now, and if not, if it is possible for them to change that.

Three good things
One really good way for someone to learn what their resources are is to make time at the end of every day to write down three things that made them feel good – no matter how small, perhaps something someone said to them, or something they saw or did. People are often surprised at things that support them, and once they know what they are, they can draw on them when they need them most. The simplicity of this exercise belies its power. Remembering the things that made you feel good that day gives a second burst of serotonin. Done at the end of the day, it can encourage more relaxed sleep. This is a useful tool in periods of depression too, as it stimulates the body’s natural production of anti-depressant hormones. A notebook specially for listing the three good things makes good reading.

REGULAR RESOURCING

Accessing resources at all times Once they have a thorough list of resources and de-stressing activities, clients can identify those they can access even when they are far from home or have very little time or energy, and mark them on the list for easy reference. It can be valuable to group the list of resources into at least three categories: those available to them during their most fatigued times; those they can do on their best days; and those in between.

Oases and active rest
Some resourcing activities are oases – they support the client by giving them a break from feeling unwell or even focusing on recovery. An oasis might be absorbing themselves in a good book, music or knitting. A good oasis is imagining themselves in their favourite place (this can be a real place, such as a favourite beach or an imagined safe space) and using each of the senses in turn to feel all the sensations of being there, including smells and the feeling of weather on their skin or the sand under their feet. The concept of ‘active rest’ is useful; this is time to access a parasympathetic state, which they may not do when lying in bed or collapsing exhausted onto the sofa. Relaxation CDs can be helpful, while some clients find that they can remember the feelings of deep relaxation common in craniosacral sessions, and that they can access a similar calm, healing state when they do this.

Prioritising resourcing
Even when they may be too fatigued to do other important things, it is vital to their recovery that some of each day is spent in a relaxing and enjoyable manner. The hormones released and nerve pathways activated when we are happy and relaxed are essential to healing. When someone has fatigue, many pressing demands easily build up – including basic tasks such as food shopping or paying bills – so it is tempting for people to leave out enjoyable or relaxing activities and focus on practical tasks exclusively as soon as they have any energy. And so I have often reminded clients that if getting well is their greatest priority, taking time to relax and nourish themselves is perhaps the most important thing in their day.

I suggest that clients programme in activities during each day that are resourcing, or that remind them what their resources are: this could be cooking a meal or sitting down with a cup of tea, looking through a photo album or doing some gentle stretches. Many find meditation, yoga and tai chi or chi kung beneficial, others make sure they connect with nature each day in some way; even just getting outside for a few minutes helps most people. Some people need to write these activities in an appointments diary to make sure they do them. It is important for people to pace activity and build up slowly and steadily after times of decreased activity, so using a weekly plan to spread out resourcing activities throughout the week is a good idea, especially if they require more physical activity or concentration.

LOOKING AFTER BASIC NEEDS

Eating and sleeping are two important resources. Together with being fully hydrated and warm enough, these are more important than ever while recovering, and people with fatigue conditions won’t have as much flexibility about missing a meal or having a late night as people in good health. In full health, we take our ability to respond to our basic needs for granted. However, when fatigued, people can find it hard to hear their body’s signals. When they feel a dip in energy, it can be helpful to run a mental checklist: are they hungry, thirsty or cold? Some people find it helpful to schedule rest, eating and water breaks into their day atspecific times to make sure these needs are met even when the body is giving confusing or unclear signals. It can be important for clients to plan ahead so that they don’t leave meals and proper rest to chance. Digestive difficulties and food intolerances are common in fatigue conditions. Adjusting to a new diet can take some practice, and may mean it’s hard to buy food on the go; so carrying a snack may be an important resource.

While their nervous systems are easily activated, people may find it takes longer to wind down from activity. Equally, they may need more time to be able to get ready for their day calmly, as it is easy to switch to adrenaline as a source of energy when their activity level increases. I advise clients to support their sleep by stopping work on the computer, or watching TV, an hour or two before going to bed, as these can be stimulating activities, and the light from the screen can interrupt the brain’s understanding that it is night. Using candlelight at bedtime can also be calming.

USING BODY AWARENESS

Body awareness is fundamental to selfcare, and craniosacral therapists are ideally placed to support clients to develop it. People with fatigue conditions with constant pain, anxiety and exhaustion, find it hard to be at ease in their bodies. Also, they often feel the need to push beyond their energy levels to do work or socialise or simply get out of bed, and this engages the stress response (activating the sympathetic nervous system).

Tracking sensations helps us monitor our energy levels and stress, and so can help a client stay within their emotional and energy limits when possible. At other times, it simply helps them to know when they have gone beyond their limits, so they can make sure they give themselves support afterwards. Being able to stay in touch with their body sensations can help them stay calm, grounded and clear-headed in stressful situations, and recover more quickly. Developing body awareness can help sensitive people manage resonance with other people’s stress. Alongside noticing when stress levels increase, techniques to lower stress levels are needed to help them settle when in the company of others who are stressed. Using body awareness to learn what ‘safe’ feels like after months or years in a chronically sympathetically-activated state has proved to be very valuable therapeutically.

Body awareness is essential to pacing – a skill that is vital in managing fatigue symptoms, preventing sympathetic activation and saving energy so that it can be used for healing. Being able to tell when to rest and when to build up strength and activity is perhaps the most crucial and most difficult skill needed for recovery.

As with all clients, it is unwise to rush a process of developing body awareness or challenge resistances. Louder, more uncomfortable or painful parts of the body often take our attention, but encouraging clients to familiarise themselves with where and in what way they feel comfortable right now can be a good start for those who are often overwhelmed by chronic discomfort. Once someone can orient to comfortable sensations, dual awareness (where awareness of an uncomfortable sensation is held in balance with awareness of a comfortable sensation) has been a really useful skill to share, as well as breathing techniques, grounding and other stress-reducing practices.

PREPARING FOR RELAPSES

Relapses are an inevitable part of the recovery process. They may be triggered by normal exposure to viral infections or even over-exertion from the excitement of being able to do more. Even the best-laid plans and the most refined pacing skills can’t prevent relapses. A sudden change in the weather, a distressing event or sheer bad luck are all part of life, and so preparing for relapses is essential to recovery. The better a client is prepared – psychologically and practically – the less impact relapses have, and the more quickly they can find their way back into making steady progress.

One really helpful tool is the ‘resources box’. This is a special box that someone puts aside for those times when they do relapse. They choose the items they need in there, and these should be practical supports, such as easy-to-prepare food (tins of soup are good) and a bottle of water, together with things that support them emotionally – things that make them feel good, like a relaxing CD, lavender essential oil or photographs of a special place. Some people might find it supportive to include affirmations, inspiring quotes or notes to themselves reminding them of what has helped before during relapses, such as hot baths or specific stretches.

At these times, partners, parents or carers may struggle to know what to do to support the client practically or emotionally, and this can be stressful for all concerned. The lists of ‘three good things’ can generate ideas. If, for example, flowers give them a boost, then buying a
bunch of flowers to have by the bed can be a supportive thing to do.

Relapses happen. It can be very upsetting for the client to find they feel just as bad as they used to, especially if they have made great progress. However, it is often the length of time between relapses that is the measure of progress, as well as how quickly someone bounces
back from them. As the health builds, and with good pacing skills, people will be able to lessen the severity of relapses and recover faster from them. A person’s health builds in the periods between relapses, so a relapse is not a step backwards, even though it may feel like one. It is at these times that a client most needs to draw on their resources, and it may be the time when they have least motivation or energy to do so. It is important when they are really unwell that they know their resources and which ones they can access with very little effort. Practising techniques, and making sure they have what they need within easy reach for oases and other activities, is all part of being well prepared. Relapses can be used to refine resourcing techniques, and recovery from relapses can be affirming of these skills and the body’s capacity to heal.

VISIONING AND IMAGINARY HINDSIGHT

The recovery process from chronic fatigue is rarely linear. Hope is essential to embarking on a therapeutic journey but its flip-side is despair, and when hopes are so often dashed, it can be painful to even remain open to the possibility of feeling fully healthy one day. For some clients, their old life has fallen away and it is not possible to return to the same work or lifestyle, and healing can be delayed by a kind of ‘crisis of vision’ as to what life beyond chronic fatigue could look like and what things need to be in place in order to get there. When I have sensed this may be the case, I have offered a simple but powerful exercise: On a blank postcard, someone can draw what they, and their life, would look like once they were fully well. (Some people prefer to buy a special card to do this.) Then the person can write to themselves a ‘wish you were here’ message, describing what it’s like and how they got there. This technique, called imaginary hindsight, can be useful for anyone facing a seemingly impossible obstacle or transition.

FINDING AN INTEGRATED APPROACH

Working with this client group has led me to broaden and diversify my approach, and I continue to learn from my clients and colleagues, my own experiences, professional development and therapeutic process. A practical approach for supporting clients to develop their resources is important but it is not a substitute for other therapeutic skills. At times it can be tempting to offer practical advice rather than stay present to the suffering, despair, futility and agony that are so common, or to carefully attend to the faintest expressions of health when a client’s system feels so desperately depleted.

As craniosacral practitioners, we know that our bodies naturally gravitate towards healing, given the right conditions, acknowledgement and support. This experience can be elusive for people with chronic fatigue – and indeed for those of us supporting their therapeutic process. As practitioner, I have needed to pay close attention to my own resources, as well as my professional development. For clients, knowing their resources, and using them, is an excellent life skill – during recovery and in full health. Discovering what supports them can be rewarding, and even fun. A journey through recovery, and beyond into full health, can be one that uncovers many riches.

 

The opinions expressed in this article are those of the author and do not necessarily reflect the viewpoints of the CSTA.

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