Inside the Mouse’s House…

by Susan Quayle, author of Mouse’s Best Day Ever

Sitting at the kitchen table were my two children and my daughter’s two friends, who had come over to play. They were having lunch and chattering away as children do, when I heard, “Poppy’s got a reward chart,” after which there was a brief silence, followed by, “for going to the toilet.” I have to admit that this was not exactly what I was expecting to hear. I turned around to join in the conversation, asking “how does that work then?”

Continue reading

Drawing and Writing about Anxiety

Koscik-WhenAnxietyAttacks-C2W

When Anxiety Attacks is a graphic memoir about living with anxiety and finding help through a therapist. In this blog, Terian Koscik, author and illustrator, gives an inside look to her experience of drawing and writing about anxiety.

tumblr_inline_nt61yp2rlA1t4c7bv_540

One of the hardest parts about living with anxiety is trying to explain what it’s like to friends and family who don’t experience it. To them, it makes no sense that someone who is usually capable of making clear, rational decisions would have fears and thoughts that are totally irrational. What they don’t realize is that anxious people are often perfectly aware of how irrational our thoughts are. This doesn’t make it any easier to ignore them, though. Dealing with anxiety, beginning to understand it after going to therapy for the first time, and trying to convey my new sense of understanding to others led me to want to create a comic book about the experience.

As a child, my anxieties appeared blatantly silly and irrational to outside observers. I would panic whenever the phone rang, worried about what would happen if we didn’t answer it before it went to voicemail. What if it was an extremely important call, and they needed to talk to us right then? Or what if they thought we didn’t care?

As adults, we have a lot more in our lives to worry and panic about, and the line between what is silly and what isn’t is harder to see, especially if one’s default state is to worry. After graduating from college, my best friend from high school moved in with me, and I was distraught when she didn’t seem as enthusiastic about living together as I was. I constantly thought about what I was doing wrong when she chose to spend her time alone instead of with me, and whether I was capable of making any friends at all. I ended up going to therapy to talk about these feelings. I gradually realized that my worries were based on a general fear of being alone rather than anyone’s specific actions, that I could address them directly by asking others for help, and that there was nothing wrong with me for feeling this way.

In my book “When Anxiety Attacks,” I used dramatically different color palettes to demonstrate the way that irrational anxious thinking separates one from their usual ability to consider facts and possibilities. Other people and possibilities other than the worst case scenario do not exist in this state of mind. This makes it difficult or impossible for well-meaning loved ones to get through to us when in this state. For example, if I felt lonely, someone might remind me that I have many friends and family to turn to for reassurance. However, my anxious thinking would find a way to ignore this advice. Wouldn’t my friends and family have more important things to do than listen to me complain? Did I even deserve their attention?

Through therapy I have found that as anxious people, the best we can do is remain open to facts and possibilities, and not judge ourselves too harshly for the tendency to worry. I hope that my book will help others reach this conclusion.

Terian Koscik has been a reader of comics, a creator of comics, and an anxious person for almost as long as she can remember. Most of her work is autobiographical in nature, and deals with finding humor in feelings of loneliness, anxiety, and depression. She posts her work regularly at http://pineconedoesthings.tumblr.com/. Terian lives in Portland, Oregon with 4 humans and 2 rabbits.

Tweet in a drawing of your anxious self to @Singing_Dragon_ using the hashtag #AnxiousMe to enter the chance to win a copy of When Anxiety Attacks

Learn more about When Anxiety Attacks here

Call for Comic and Graphic novel submissions

Singing Dragon and Jessica Kingsley Publishers have recently started developing an exciting new line of comics and graphics novels and we are now open for submissions.

Singing Dragon publishes authoritative books on all aspects of Chinese medicine, yoga therapy, aromatherapy, massage, Qigong and complementary and alternative health more generally, as well as Oriental martial arts. Find out more on intl.singingdragon.com

JKP are committed to publishing books that make a difference. The range of subjects includes autism, dementia, social work, art therapies, mental health, counselling, palliative care and practical theology. Have a look on www.jkp.com for the full range of titles.

If you have an idea that you think would work well as a graphic book, or are an artist interested in working with us, here is what we are looking for:

Graphic novel or comic – Long form

We are looking for book proposals that are between 100 and 200 pages, black and white or colour, and explore the topics listed above or another subject that would fit into the JKP/Singing Dragon list. Specifically we are hoping to develop more personal autobiographical stories.

Here are the guidelines for submission:

  1. A one-page written synopsis detailing the plot/outline of the book, as well as short bios of all the creators involved.
  2. Character sketches of the main characters with descriptions.
  3. Solo artist/writers or writer and artist teams should submit 5 to 10 completed pages to allow us to get a sense of the pace, art style and writing.
  4. Solo writers will need to submit 10 to 20 pages of script as well as the one-page synopsis from point 1.

Comic – Short form

We have some shorter comic projects underway and are looking to expand the range of topics covered. These books can run from 20 to 40 pages, black and white or colour, with dimensions of 170x230mm. We are mainly looking for comics that provide ideas and information for both professionals and general readers.

For example, the first in this series, published by Singing Dragon, is a book exploring the latest developments in chronic pain research.

Here are the guidelines for submission:

  1. A one-page written synopsis detailing the narrative style and subject matter to be explored in the book. Also include short bios of all the creators involved.
  2. Solo artist/writers or writer and artist teams should submit 3 to 5 completed pages to allow us to get a sense of the pace, art style and writing.
  3. Solo writers will need to submit 5 to 10 pages of script as well as the one-page synopsis from point 1.

When submitting please provide low-res images and send them, along with everything else, to Mike Medaglia at mike.medaglia@jkp.com

If you have any other ideas that don’t directly relate to the subjects described above but you feel might still fit into the Singing Dragon or JKP list, please feel free to get in touch with ideas and enquiries on the email above.

Books for Mental Health Awareness Week

Mental health awareness week is a great time to look at how natural therapies can complement mental health treatment and be fundamental to keeping the mind healthy and preventing problems in later life. Here is a selection of some of Singing Dragon’s books for improving mental health.

                                                                                                                                                     

Recovery and Renewal by Baylissa Frederick

Frederick_Recovery-and-Re_978-1-84905-534-5_colourjpg-webMany people will be perscribed medication at some point in their lives to help with a mental health issue, but they can lead to dependency and coming off prescription drugs can be one of this most challenging parts of maintaining mental health. This book will be a lifeline for anyone taking or withdrawing from sleeping pills, other benzodiazepine tranquillisers and antidepressants. The author draws on her personal experience of coming off benzodiazepine tranquillisers to explain everything you need to know about withdrawal, including how to identify symptoms, manage them, and take firm steps towards recovery. It’s an uplifting, empowering read which will also be useful to families and friends of people overcoming perscription drug dependency, as well as medical professionals.

 

 

                                                                                                                                                     

Managing Depression with Qigong by Frances Gaik and Managing Stress with Qigong by Gordon Faulkner

Gaik_Managing-Depres_978-1-84819-018-4_colourjpg-webFaulkner_Managing-Stress_978-1-84819-035-1_colourjpg-webThese two practical books give step-by-step instructions for Qigong forms designed to combat depression and stress. No previous experience of Qigong is necessary. Frances Gaik is a clinical professional counsellor and provides a treatment plan with helpful advice from her years of practicing Qigong and meditation in therapeutic settings. Gordan Faulkner is Prinicpal Instructor at the Chanquanshu School of Daoist Arts. His anti-stress exercises are designed specifically to fit around a busy lifestyle and have been extensively trialled with Maggie’s Cancer Care Centres.

                                                                                                                                                     

The Mystery of Pain by Douglas Nelson

Nelson_Mystery-of-Pain_978-1-84819-152-5_colourjpg-webThis is a personal tutorial for understanding the psychology of pain. Douglas Nelson takes an in-depth and surprisingly entertaining look at how we experience pain and what medical professionals and therapists can do to improve treatment. Through asking strange questions like ‘Why does scratching an itch feel so good?’ and ‘Why is pain from a mosquito bite preferable to the same pain from an unidentified source?’ Nelson shows how us that the more we understand pain, the more power we have to control it.

 

 

 

 

                                                                                                                                                     

Fragrance and Wellbeing by Jennifer Peace Rhind

Rhind_Fragrance-and-W_978-1-84819-090-0_colourjpg-webFragrance has a powerful impact on our mental and emotional states, with scent playing a key role in forming memories and sense of place. This book explores the impact of fragrance on the psyche from biological, anthropological, perfumery and aromatherapy viewpoints. The author explores how scent has been used throughout history and across cultures, discusses the language of fragrance and presents detailed profiles of a broad range of fragrance types including their traditional and contemporary uses, and mood-enhancing properties.

 

 

 

 

                                                                                                                                                   

Principles of EFT (Emotional Freedom Techniques) by Lawrence Pagett and Paul Millward, and Principles of NLP by Joseph O’Connor and Ian McDermott

Pagett-Millward_Principles-of-E_978-1-84819-190-7_colourjpg-webO_Connor-McDerm_Principles-of-N_978-1-84819-161-7_colourjpg-webThese are quick and easy introductory guides to teaching yourself the therapeutic psychological techniques of EFT and NLP. EFT (Emotional Freedom Techniques) work by removing blockages in your body’s energy using tapping  in order to feel more positive, energetic, and less stressed. EFT can relieve a wide range of conditions including anxiety, anger, depression, insomnia and migraines. NLP (Neuro-Linguistic Programming) is a system of modelling your speech and behaviour to achieve your goals and connect better with those around you. It’s applications include building confidence, beating depression, and developing your career. NLP is a great starting point for anyone looking to improve their life.

                                                                                                                                                   

Mental Health Awareness Week runs from May 12-18, for more information see www.mentalhealth.org.uk. For more books on a range of mental health issues visit Singing Dragon’s parent company, Jessica Kingsley Publishers, www.jkp.com.

Don’t expect it to go right – by Chris Mitchell

I have been asked frequently of late about whether or not mindfulness ‘works’. Personally, I think it neither does nor doesn’t work as it is something that one can neither succeed nor fail at. I appreciate that just because it can have an effect on the quality of life for some individuals with Asperger’s Syndrome, including my own, it doesn’t necessarily mean it is for all. It can be easy to become put off from mindfulness practice when one feels that their mind wanders so much that they can’t calm it, and become more frustrated through just ‘trying’. But just simple noticing of the mind wandering is a good start. One of the most useful pieces of therapy I have had for coping with set-backs and disappointments is not to expect anything to go right, including mindfulness practice.

Too often when we set out to see or experience something that interests us or we are enthusiastic or passionate about or what has always been on our bucket list of things we would like to do, we almost expect to have a great time that we forget that there is the possibility that something might go wrong, and when it does, feelings can include not just disappointment, but also frustration, which in turns results in low mood.

northern light-smallAn interesting way to potentially experience disappointment as well as learn how to cope with it in a positive way is through chasing the Aurora Borealis, or Northern Lights. Some have been fortunate to have seen the Northern Lights in the UK 2014 courtesy of a recent powerful solar storm that resulted in a Coronal Mass Ejection (CME) strong enough for its impact on hitting Earth’s atmosphere to be visible much further south than normal. But as Northern Lights enthusiasts know well, more than just strong solar storm activity needs to occur to have a chance of seeing the lights, even when one is around Earth’s magnetic pole above the Arctic Circle in Tromso, Norway, a clear sky is needed and for the phenomena to be visible, solar storm activity has to be at the right level and has to happen at a certain time.

It is human nature to want an explanation as to why phenomena like the Northern Lights happen and as a result many myths have been associated with them over thousands of years, as they could appear very brightly without warning. The Sami, native to northern Scandinavia, believed that they came about when an arctic fox ran over the mountains leaving behind a mist while the Greenland Inuit believed them to be the souls of babies yet to be born.  Though solar storm activity is generally constant, even with present technology, it is still very difficult for astronomers to predict when CMEs will hit Earth’s atmosphere. With the added need of a clear sky, those on Northern Lights chases can experience either wonders or disappointment.

However, being aware that the phenomenon isn’t guaranteed to happen is a good way to prepare for potential disappointment. From images of northern Scandinavia, it can be assumed warm fire-smallthat the Northern Lights appear just about every night, but when visiting, one finds that reality and perception are two very different things, including the often harsh reality of adverse weather conditions for those who live there. After two nights looking for any signs of looking for any signs of aurora with no luck and poor conditions for aurora viewing including low cloud cover, when the adverse weather conditions of heavy snow, wind and cloud cover continued into my third night, when instead of thinking about whether or not I would see any aurora activity I had become more accustomed to the thrill of being in the Artic in heavy snow with access to the warmth of an open fire in a Sami tent, there came a break in the clouds and I managed to see a green tinge of aurora activity!

The aurora display that I managed to see was visible for only a few minutes until it was obscured by cloud again. But when it did appear, it provided me with a little reminder of how to approach mindfulness practice, which similarly with aurora chasing, not to have any expectations as to what its effects may be.  Aspects of Asperger’s Syndrome, including high anxiety, low self-esteem and depression can’t be ‘eliminated’ through mindfulness practice, but in time, the effects of mindfulness practice can help one deal with such issues, including coping with disappointments in a positive way.

During CME’s, which cause the phenomenon, the Sun loses some of its mass, which weakens its gravity, contributing to earth’s orbital period, and the year, gradually becoming longer, a reminder that the concept of clock and calendar time is neither fixed nor permanent, as are any effects of mindfulness practice. Understandably, if a person with Asperger’s Syndrome who experiences high levels of anxiety relies on the relative predictability of structured clock and calendar time, natural time as it unfolds can be a difficult concept to grasp. However, by initially just noticing reliance on structured time can help to see how it can become a controlling factor in one’s life when, including noticing certain habits that arouse from such routines. Any effects of mindfulness are more likely to arise in the much more abstract nature; natural time that we can’t often see rather than in the clock and calendar time we see frequently and come to rely on.

Just as it helps when going aurora chasing not to expect to see any aurora activity, similarly when seeking mindfulness practice, it helps not to have any initial expectations of any effects.

Chris Mitchell is the author of Asperger’s Syndrome and Mindfulness (2012) and Mindful Living with Asperger’s Syndrome (December 2013) both published by Jessica Kingsley Publishers.

Holding Calm Within, Concentrating Attention Beyond: Asperger’s Syndrome and Lake Meditation – by Chris Mitchell

Chris-Mitchell-2People with Asperger’s syndrome are known for a liking for solitude, particularly if they feel that they can’t be understood or don’t feel accepted within the social world. Though a person with Asperger’s Syndrome may be quite content in such a setting, they may not initially be aware that it can lead to excessive isolation. However, where such a preference can help develop social skills is through adapting qualities from spending time in solitude into social environments. To enable this, one must see solitude as a place to step back from the flow rather than as a place to hide. Since being  diagnosed with Asperger’s Syndrome, this is an aspect of my condition that I feel I have gradually begun to notice more. I am more aware of how solitude affects me and others around me, including how my Asperger-related tendencies have an effect on others as well as how the moods of others affect me. When stepping back from the flow in a natural setting, particularly in a forest or by a lake and  applying my focus to the present, I am able to see how various inter-connected factors cause different effects to happen, as well as being able to observe and be present with the qualities of adaptability and receptiveness that nature has.

When practicing lake meditation, a meditation technique that can be practiced by an actual lake or just with the lake image in mind.  One begins to notice the receptiveness of the surface of the water contained in the lake, and the lake’s responses to constantly changing factors including responding to wind with ripples, which produce a sparkling effect when reflecting sunlight or moonlight. On a clear day, from a good vantage point, the depths of a lake can sometimes be seen. Lake Wastwater in Cumbria is one such lake where the depths of the lake, including what the lake is comprised of, can be seen from the ascent of nearby Scafell Pike. With continued and focused attention, one also notices that the surface of the lake changes colour in accordance with the weather, dark when cloudy and inviting in reflections under clear skies.

It is important to expand your attention during your practice to consider how factors that affect the appearance of the lake also affect how we feel within the body.  How we feel within affects how we present on the outside. For instance we may shiver when temperature drops or a when a draft blows in or ‘jerk’ when caught in a gust of wind. But rather than allowing such occurrences to become an interruption or a distraction to the extent that they lead us to giving up the practice, it helps us to notice and acknowledge any impulses we have to react. In turn, this helps one notice how when we act on our impulses we find ourselves on ‘automatic pilot’, almost being controlled by them.

When we transfer the qualities experienced during lake meditation to social situations, we notice how factors affect our moods and feelings. Like the surface of a lake changes colour in response to light, facial expressions in people often change in shape and form. People’s complexions can change in between moods  and a change in mood and feelings brings about different actions and responses. As a person with Asperger’s Syndrome, I sometimes feel like I am an ‘actor,’ in that I learn non-verbal social skills from observation. But to enable appropriate acknowledgement and response in a social situation, it helps to be able to maintain the calm beneath one’s external presentation, relating to the calm water beneath the surface.

Taking a step back from the social world into solitude to practice lake meditation can help a person develop observational skills that are helpful in developing non-verbal social skills. To be able to be present with such observations, as well as to be able to apply attention when listening and retain the calm beneath the surface are qualities that when applied to social situations can enable social connection, acceptance and inclusion.

Chris Mitchell is the author of Asperger’s Syndrome and Mindfulness (2012) and Mindful Living with Asperger’s Syndrome (December 2013) both published by Jessica Kingsley Publishers.

How to open your heart – by Rosemary Patten

Patten, RosemaryWe are full of complexities, a myriad of different functions that completes us make us part of the human race.  Our bodies crave order and the status quo, yet our heart wishes to be free, joyful and loved. We are looking for that special something that unites us with nature and the heavens. Yet we become distracted with challenges of life, we twist and turn looking for that spark of our existence.

The Universal life force energy that unites us is drawn into us by seven main energy centres or chakras.  Our heart is the link between earths’ energy and the heavens. When our heart is in balance we can love, be joyful, and can cry when life around us is tough.  We can live each moment with pleasure, accept ourselves in the now and forgive our weaknesses.

People who have in the past inflicted pain and have indeed broken our hearts should be forgiven.  We know in our heart that it is their failure to understand, they have taught us strong powerful lessons that we need to know.  When we understand the people who have hurt us, we free our hearts from the pain and our heart has been healed. When we stay in conflict, we only continue to be unhappy.  This negative energy emulates out to people, the world, the planet and the Universe.  Everyone around us receives our signals as hostility toward them, people move away from us and our isolation grows as we push the hurt deep down inside us.

How can we forgive such terrible hurt?  We are who we are and we cannot change, our scars are there, tight in our heart, locked deep. They are almost physical in the pain they inflict, too frightening to bring to the surface and assess.  But if we do not allow ourselves to cry, to feel that which we shut away, and then let go with understanding and compassion, we will not be that person we want to be. The pain will not go away unless we release it and forgive those who have rendered us immobile.

We must forgive ourselves for hanging onto a hurt that takes our breath away- the breath of life.  Start to see with different eyes, a world that is sacred and all things beautiful.  We must learn to emulate our love outwards and love will come to us. There is no effort involved as our thoughts are more and more positive.  We experience love in all its different forms; love of nature, art, music, mankind and the love of that special person.  Love our amazing planet and love the Universe that created us and loves us back.

How can we regain this balance between heaven and earth?  When you are aware of your thoughts, it releases negativity. Thinking on the following affirmations confirms your intention. We will attract positive thoughts towards us, a higher vibration that raises us up towards the heavens. The heart is the link between our higher self and earth, beginning our journey greater understanding.

How to open your heart

Affirmations – choose two of the following or use your own personal affirmations:

I release all feelings of guilt and start my journey to peace and love.

I accept myself and know that my heart is mending.

I can cry and can release those feelings of hurt.

I am surrounded by the beauty of nature and this makes my heart sing with joy.

I forgive those who have broken my heart they also are on a journey.

I embrace change and look forward to exciting new challenges.

I only surround myself with people who bring joy into my life.

Try to be aware of your thoughts, allow negative thoughts to come to the surface.  Never suppress them, as they are low vibration and will be heavy.  Picture in your mind’s eye a red balloon and place the negative thoughts into the balloon, allowing them to drift of up into the sky.

Whenever possible, change any thought to a more positive vibration by putting a spin on it. For example ‘I am dreading work today’ could change to ‘I am dreading work today so I will meet my friend at lunchtime, always enjoy her company. I am lucky to have such a good friend’.  Now there is a reason not to dislike work, as you are now more optimistic!

Once you start bringing your thoughts to a conscious level you will feel you have more energy. The journey of forgiveness towards those who have hurt you in the past has begun. By healing yourself you will truly open your heart and bring true love and joy into your life.  That joy and love can then spread through to all who come into contact with you.

 

Rosemary Patten is a master Reiki practitioner, aromatherapist, reflexologist, and author of Japanese Holistic Face Massage. She lives in Kent, UK.

Raise awareness of Ehlers-Danlos Syndrome this May

 

EDS awarenessMay is Ehlers-Danlos Syndrome (EDS) Awareness Month, raising awareness of this multi-systemic and complex connective tissue disorder, and supporting those who live with this invisible condition.

As awareness and understanding of EDS are central to early diagnosis and management of symptoms, take the time to learn about the condition, and simple steps that can help the many people who live with it.

Learn more about EDS (especially type III – Hypermobility Syndrome) with these interviews and resources, and more:

Books:

Interviews:

Organisations:

See also:

© 2013 Singing Dragon blog. All Rights Reserved

Play the Frog’s Breathtaking Speech Game

Bring the benefits of yoga and yogic breathing techniques into the classroom and the home with this game from Frog’s Breathtaking Speech author Michael Chissick. Based on the book, the game is a fun way to help children to recognise negative emotions and lean how to turn these into positive ones.

Simply download the game boardcard set and instructions from these links and with some simple steps you’ll be ready to roar the house down with Lion, shake the walls with the Woodchopper Breath and more.

The game is at its most effective if used with the book, Frog’s Breathtaking Speech – find out more about the book here.

 Michael Chissick has been teaching yoga to children in primary mainstream and special needs schools as part of the integrated school day since 1999. He is a primary school teacher as well as a qualified yoga instructor. He is also a specialist in teaching yoga to children with Autism Spectrum Disorders. Michael trains and mentors students who want to teach yoga to children.

© 2013 Singing Dragon blog. All Rights Reserved

Understanding and treating the complex chronic patient – an interview with Isobel Knight

Isobel KnightWhat makes treating the chronic complex  patient so difficult? Do you think there is still a lack of understanding about how best to approach this?

I think that practitioners are very scared by complex chronic conditions and can become very overwhelmed. I’ve had so many medical professionals dismiss me because they really didn’t understand what the problem was. Treatment of chronic complex conditions really does require a multi-disciplinary team of people and medical experts, as well as an overarching approach to treatment plans. This can all be overwhelming for one person.

Conditions become chronic and complex over the years. There’s often a long delay in diagnosis (research by the Hypermobility Syndrome Association in the UK suggests that diagnoses can take about 10 years). As an individual gets older, he or she will gather more problems, which makes treatment even more difficult, relating to more bodily systems. If the condition is intercepted younger, these can all be addressed and hopefully better controlled.

How has being an individual with EDSIII (Ehlers-Danlos Syndrome – Type 3, Hypermobility) influenced the way you treat people in your clinic?

Based on what I’ve experienced, I can certainly spot the condition very quickly in people who haven’t had a diagnosis. Although I can’t officially diagnose, if the symptoms are there, I can get them sent to their GP for a referral to an expert rheumatologist. So in this way it’s really helped some people. I also know what ongoing management they are often going to require, so I can both refer them on to practitioners that I know, and support them with Bowen Therapy in the areas that I know they will need help with.

I’m never overwhelmed by what patients say, and I always believe them. And that helps a lot.

Why did you choose the autoethnographic approach in writing your new book?

That was inspired by an author I quote in the book, who wrote about life with a kidney condition and eventually turned it into a PhD thesis. I thought it was a really good way of framing the book. It uses my story as a basis, but also weaves in the stories of others, to ensure that it’s socially representative of that culture group. But also, this is a personal story. I include some quite personal details, and I hope that this makes it much more accessible to read, not a dry textbook. It really says how the patient feels, from my point of view and from the points of view of others.

Book cover: A Multi-Disciplinary Approach to Managing Ehlers-Danlos (Type III) - Hypermobility SyndromeIn the book, you go into quite a lot of depth on the psychology involved both in having a chronic complex condition and in treatment. Do you think that the importance of this area is underestimated?

Yes. I was actually really surprised how large the psychological section of the book ended up being. There are so many layers to it, trust being a very important one. The issue of trust is so important for any medical professional dealing with a chronic complex patient. Personally, I had been consistently told by a range of professionals that the pain I was experiencing was psychosomatic, and that there was nothing wrong with me. I think that most patients have years of that to contend with. In so many cases these conditions involve a legacies of problems that haven’t been fully handled since a young age. Behaviours change because of pain. That really has an impact on people. They get angry, they get depressed, they get anxious.

I’ve also included a section for the patient on managing chronic pain, cognitive behavioural therapy, and other psychological aids such as goal-setting, pacing, ways of communicating and dealing with doctors.

Medical professionals also need support psychologically in dealing with the complex chronic patient because, as mentioned, treatment can be very overwhelming for them, and quite emotionally draining. If one of your patients comes back every week with little improvement to their pain, it can be emotionally difficult as a therapist to make a positive spin on it and focus on treatment.

Social media seems to be a really supportive, positive force for the treatment and understanding of these conditions. How do you see this developing in future?

I think that because some patients with this condition can become quite disabled, and socially isolated, Facebook, for example, can be a real lifeline for them. It’s a way for them to get mutual support, to learn more about the condition, to realise they’re not alone in their experience. I’ve been staggered by the response to my Facebook page, and how it’s being used internationally to provide support and share information on this subject (but never any medical advice).

How do you hope this book will help professionals working with, and patients with the syndrome?

I hope that the patients will be able to see that there has been, in my story, quite a positive improvement due to the level of care I’ve had, and the experts I’ve managed to have access to. Physiotherapy has been essential in this. I’d like to offer patients hope but also the reality that this is a genetically inherited condition, which is about management, not cure. I hope that the book provides not only treatment information, but validation – they can take the book to their doctors to show them what’s going on. It’s as up to the minute as up to the minute can be in terms of medical research and practice.

In terms of the medical professionals, I hope that they can understand the full impact of a multi-systemic chronic complex condition, what it means to have bodily systems not working very well, and the impact that this has psychologically, physically and socially. I hope this helps them to develop a bit of a more empathetic approach.

I’m incredibly lucky to have been able to have 6 real experts in each field contributing to the book. This means that they’ve been really able to bring the book up to date with the latest research on treatment and medical management of the condition. That’s a real privilege.

© 2013 Singing Dragon blog. All Rights Reserved