Eczema and its connection with books, music and meditation

It has now been almost three years that I have been writing about our family’s experiences of dealing with eczema. These are experiences that have shaped our life and changed it irrevocably as most chronic conditions inevitably do. Most of the times we do not have a choice about these changes and we can only let events unfold themselves as they occur. But we do have a choice as far as our responses are concerned. We can choose to accept these changes and deal with them or we can choose to rail at them and complain about them. While it is far easier to do the latter we chose the former path and we are only now seeing the positive outcomes associated with them. But dealing with any kind of lifestyle change is not easy, especially ones which are associated with health conditions.

Stress, anxiety and self confidence

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Since I am my daughter’s primary caregiver, I spend a lot of time focusing on her bathing and moisturizing routines, two crucial aspects of managing eczema. But I also spend an equal amount of time or even more on something that we don’t get to see. The emotional scars that are left behind in a child struggling to cope with a severe health condition day after day, month after month with no end in sight. The emotional pain of living with eczema, the erosion in self confidence linked to the constant scratching and physical rashes on the body, the frustrations which can build up due to the restrictions in terms of activities and diet to name just a few. The stress and and anxiety that a child experiences if not managed properly with due care and attention, can lead to many more complex issues once the child becomes an adult. And even though we do not realise it always, a child has his or her own share of stressors which may seem trivial to us but are actually very real and important to them. This is not something we can take lightly or ignore, this is something akin to a garden where the flowers and the trees have to be tended to and given a great deal of attention while they are still growing.

I had written a post earlier about how you can help your child cope with eczema and you can read about it at https://eczema-anindianperspective.com/2013/11/19/beauty-is-not-just-skin-deep-helping-your-child-cope-with-eczema/

This post takes that topic even further based on our own experiences since then and expands on that topic.  For us this aspect of managing eczema became even more important after our daughter’s catastrophic reaction to her medication’s side effect in 2013. She battled a life threatening infection and was hospitalized for a month. I have written about it in my post https://eczema-anindianperspective.com/2013/10/27/the-tough-get-going-part-2/

She also lost all her hair in a few days and had a tough time in school once she resumed a couple of months later. Her school discussed with and sensitised her classmates about her condition and sudden change in appearance including lack of hair.  But there were a few children who would tease her about her lack of hair and her appearance. Even outside school she became the subject of many stares and comments due to her physical appearance. It became painfully obvious that there would always be some people who were not sensitive enough to other’s sufferings and I would not be able to protect my daughter from such people the way I would have liked to. I decided then and there that I would ensure that I would teach my daughter to find the strength that was already within her and teach her ways to cope with such people. I would try and make sure that she would not lose her self confidence and self respect and that she would know that she had a choice. A choice as to how she would react to such people, a choice as to how to deal with difficult situations and a choice to be happy.

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It is really empowering to learn that while we cannot control what other people think and say we have a choice as far as our response is concerned. The stress associated with living with any chronic condition like eczema is usually very high and very real and I knew I had to figure out ways to manage it. Books, music and meditation became my tools to achieve this. Of course, all this did not happen overnight. It has taken a lot of research, time and effort to figure out what worked for us and we are still a work in progress. But what pleases me the most is that I can see the difference all this effort has made in our lives. In this post I would like to share in some details all that has helped us.

Books are the quietest and most constant of friends; they are the most accessible and wisest of counsellors, and the most patient of teachers.

Boy, standing on a pile of book reaching for a star

First I would like to mention some of the books that have provided not only my daughter but all of us with a lot of inspiration and encouragement. These are books which have simple story lines covering various topics like gratitude, happiness, strength, acceptance, compassion to name a few. I have been researching and buying such books for the past few years but a few have won a big place in our hearts. These are books I read to both my children again and again and they love to hear it every time. They are available on Amazon India (amongst others) and are easiest and most convenient to just order online. There are of course many many such books available if only one looks for them. The ones mentioned below are some of our family favourites.

  • Freckleface Strawberry by Julianne Moore- it is about a 7 year old red haired girl who has a face filled with freckles. She has to put up with all her friends calling her Freckleface Strawberry. It is a beautiful story about a girl who finds the strength to accept something that really makes her life difficult but ultimately she accepts it and then goes on to lead a happy life inspite of it. This book is the one that really helped my daughter accept her skin condition since it dealt with a similar problem.
  • Stand Tall, Molly Lou Melon by Patty Lovell- this is another book about a very short and feisty girl who has buck teeth, has a voice like a bull frog. She is worried about moving to a new school but her grandmother encourages her to be brave by just being herself, smile and sing loud and clear. She does just that and stands up to a bully in her school and wins a lot of friends eventually. It is a beautiful book about being yourself and real courage.
  • What Does It Mean To Be Present? (What Does It Mean To Be…?) by Rana Do Orio- this book is about the meaning of being present, paying attention to each and every moment. In a simple but profound way it teaches the importance of enjoying each and every moment as it comes and some key values like compassion, kindness
  • How Full Is Your Bucket? For Kids by Tom Rath and Maurie J Manning- This book is about a boy and a fictitious bucket which hovers above his head just as he was told by his grandfather. He feels happy when the bucket is full and feels sad and miserable when it is empty. He soon realizes that everyone around him has a bucket just like his and that during the day either the bucket is fills up or it is becomes empty. He also learns that by helping to fill another person’s bucket he also fills up his own. This book teaches us in a very simple way the importance of self esteem, helping others and taking responsibility for one’s happiness.
  • Zen Shorts (Caldecott Honor Book) by Jon J Muth- This is a gem of a book which has three short and simple stories each teaching us a different life lesson. One story teaches us about happiness by living in the present moment, another is about letting go of the past and the third one is about accepting change and uncertainty as being an intrinsic part of life. These are supported by beautiful illustrations and is a superb addition to one’s list of books to read to children

“What lies before us and what lies behind us are small matters compared to what lies within us”

wellbeing and healthy lifestyle concept, yoga background

Meditation, being a very ancient art is also one which is synonymous to our culture. Sadly, many of us seem to have lost touch with it and all that it has to offer us. The good thing is that it is once again gaining prominence not only in our country but around the world. There are different types of meditation practices that one can follow but the one that I will be discussing here is called “mindfulness meditation”. I find this type of practice to be very child friendly and flexible both of which were major requirements for me. Mindfulness is that art of paying attention to the present moment in a non judgmental and friendly manner. Over time the practice of mindfulness can help us look within to find the strength in times of trouble, lower our stress levels, tap into our inherent compassion and also show us how being grateful is the key to real happiness.

I use a mix of simple formal meditation practices and informal practices which I try and weave into our daily routine. Of course, when one slips up, you have to simply start off from where you left off without judging yourself or any one else for the same. This is one of the key things that meditation teaches us over a period of time, the practice of paying attention which by nature should be non judgemental. It enables us to accept ourselves as we are warts and all and is the first step towards self awareness.

I use some music CDs with guided meditation practices and a few books to incorporate some elements of mindfulness into our daily lives.

  • The CDs that I use are
    Sitting Still Like a Frog: Mindfulness Exercises for Kids (and Their Parents) by Eline Snel – it is a book and CD combination which works very well for us. The book is for the parents/adults to get a sense of the meditation practices and serves as a guide to the guided mediation. The guided meditations are simple and easy to follow and should ideally be done together as a family. There are meditation practices for different moods and problems and are very easy to follow by children on their own as well. You can also buy the one that is available for teens.
  • Planting Seeds: Practicing Mindfulness with Children by Thich Naht Hanh- This is from the practice run by one of the most well known Minfulness teachers in the world called Thich Naht Hanh. It has a combination of music and guided meditations along with a book to support it. This book discusses in details the impact of mindfulness in different aspects of life and how to bring more compassion and peace to the world. The practices that we love the most are Pebble Meditation and the Deep relaxation.
  • Planting Seeds: Practicing Mindfulness with Children by Amy Saltzman- these are a set of guided meditations through short stories which will appeal to all children. Again, these deal with various feelings and emotions with the help of simple breathing exercises. This is available in book form and on streaming apps like Spotify (not available in India at the moment).
  • CALM for kids- this is one of my favourite mobile phone (and desktop) apps for meditation. They have now launched a section for kids where they have guided meditation practices through lovely stories.
  • Insight timer for kids–  a new app that I have started using recently has a huge variety of guided meditations by different people and is quite useful in its variety.

A couple of books that I must mention here are on mindful parenting. They have been a valuable tool in giving me practical advice and ideas about incorporating mindfulness into our daily lives in simple ways. It has a tremendous impact on our lives both in terms of health and happiness and this has been confirmed in various scientific studies. The two books that have struck a chord with me are

There are many more such books on parenting and mindfulness, these are two that have really made a difference to our lives. These books not only cover the basic concept of mindfulness, they also offer practical ideas about how to incorporate into our own lives including our parenting practices. There are beautiful formal and informal practices in the books which are very child friendly and can be enjoyed by the whole family.

Music is the rhythm; art is the passion and life is the subject

Piano keyboard background with selective focus. Warm color toned image

Music can play a therapeutic role in addressing various physical, social, emotional needs of a person. It can play an important role in managing chronic eczema as well by lowering stress levels and providing solace in times of emotional turmoil due to this condition. Any kind which can help one relax will do. Music is used by many as a form of therapy but we do not need to be trained as one to use is in our daily lives. The right kind of music can inspire us, lower stress and generally contribute to our overall wellbeing whether it is listening to music, playing it in some form or singing songs. The music CDs for meditation that have been mentioned earlier work very well in this aspect.

Girl paints a coloring book for adults with crayons

Art is another form of therapy which is widely used to deal with stress and anxiety. And it is one of the best suited for children as it can enhance creativity at the same time. Research also shows that certain shapes and patterns like mandalas are more helpful in reducing stress than others. There are now a lot of Mindful colouring books available which are meant for this purpose. You can use them to spend some quality time with your child and at the same time switch off from daily stresses and focus on a simple but pleasurable activity.

A conversation is so much more than words: a conversation is eyes, smiles and the silence between the words

Close-up of family discussing on sofa

The simple art of conversation and dialogue is an amazing way of helping your child cope with the stresses of living with eczema. Conversation was something which was pretty mainstream in our earlier generations but is now being overshadowed at times with our hectic, busy schedules and digital domination. Switching off from the digital world from time to time for the family as a whole is one of best ways to enable this. I am yet to implement a digital curfew but I intend to from time to time starting with a few hours on weekends.

I struggle myself to find a balance at times and make sure that we have regular chats from time to time as a completely family or even one on one when required. Many a times during our heart to heart chats before bedtimes my daughter and my son have shared their worries, problems and even their triumphant moments. We have come to know each other’s way of thinking, shared some of our worries and our conversations have often helped my children calm down with the simple act of listening.

Yoga  and others

There are many more such ways in which you can help your child and yoga is the one which comes foremost to my mind. This is something that I have not really been able to explore much till date with my children but I wanted to mention anyway. I plan to integrate this practice as a part of the bedtime routine in the near future. You can find out about some child friendly yoga classes in your neighbourhood plus there are a lot of online options as well nowadays. These include websites like gaia.com with streaming videos as well as those offering digital downloads for those unable to join a class for any reason.

There are also some lovely books which offer simple exercises which can be done anytime or before bedtime to promote restorative sleep. There are of course many other books that are available for children.

When the mind, body and spirit work as one, anything is possible

mind, body, spirit, soul and you

You may have been wondering why I have chosen to write so much about mindfulness, meditation, yoga, emotional counselling with regards to eczema when most of us are used to dealing with the medications and the treatments. Medications and treatments of course play a large role in dealing with eczema and we are familiar with most of them.

What I have learned over the past few years of dealing with my daughter’s eczema is that true healing is a combination of treating the body along with mind and spirit. My daughter would not be where she is today in terms of her positive attitude towards life and a cheery disposition inspite of struggling with severe eczema had I not placed equal importance on all three aspects. I have learned and I am still learning from many others who have done just that and much more and inspire me to carry on.

As you would have also realized after reading my post, I am very passionate about books and they have been of immense support for us. They play a very important role in our lives in managing eczema and I wanted to share it with you. I have also had the privilege of writing a book with my daughter’s dermatologist Dr Amrita Talwar this year called I Have Eczema… So What? – Inspirational story book for children. I have mentioned it earlier as well but wanted to mention it in this context. The book is a beautifully illustrated children’s book about a 9 year old girl with eczema, who faces all kinds of emotional and physical problems. She eventually learns to manage her eczema and cope with it in a very positive manner with the help of her family’s love and support.

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The book is available at some Crossword Stores and online at amazon (physical and ebook format) and flipkart (physical format). You can buy it at

 

 

I hope that some of the things that I have mentioned in this post will be useful for you and your family in managing your child’s eczema.

May we all find the “strength to endure the pain, the wisdom to think things through and the courage to face our fears” …

Our journey continues….( a look at our ancient way of healing- Ayurveda and mindfulness meditation)

I am back! I am back with more stories to tell, experiences to share and hopefully some tidbits of information which might help another parent to cope with their child’s eczema along the way. Only a parent who is a first hand witness to their child’ s suffering due to this skin condition ( and any other such chronic medical conditions)  will be able to empathise with another family’s pain, exhaustion and some times negative thoughts that can arise out of dealing with sleeplessness, social and psychological impact that eczema can have on on a child. And that is what keeps me going to share what works for us ( most of the time) and what products, methods etc help in dealing with my daughter’s eczema.

Our introduction to Ayurveda

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I had recently taken my daughter, Aiyana to an ayurvedic hospital ( IAIM Healthcare centre – an Institute of Ayurveda or Integrative Medicine) in the outskirts of Bangalore (the capital city in the southern state of Karnataka). I was not looking for a quick fix solution or a cure to her eczema, but just exploring other traditional methods of Indian medicine which go back a very long way and seeks to heal from within. My hope is to see if our traditional medicine has something to offer to help my daughter to control her eczema in the long run without the help of other powerful medications like she is on currently.

A rigorous process

At IAIM Healthcare Centre, she was first put on an increasing dose of medicated ghee ( it is a type of clarified butter made by simmering the butter made from the milk so that it gets caramelised which gives it the unique taste and aroma) along with a severely restricted diet. This was done to remove all the toxins from her body prior to starting medications, since Ayurveda considers ghee to be satvik ( in the mode of goodness)  and is the main ingredient in many traditional Ayurvedic medicines. She was given this for 4 days till her body was saturated with ghee (as they could make out from her stools). All this while she was ONLY allowed a diet of fruits (non citrus) and plain khichdi (which is a preparation made from rice and pulses); she was also not allowed to go out anywhere but stay in one place in a warm environment to facilitate this process. The 5th day was the day of purging and she was given a laxative in order to prepare her for the medicines to follow from the next day. All this while she was given a daily medicinal ghee massage and a warm bath mixed with herbs.

An interesting change

One very interesting change that took place during this time was that her skin condition was the softest and the smoothest I had seen in some time. While Aiyana’s immunosuppressive medication continued at the same level with no change, her skin condition improved dramatically with all the diet restrictions (and no other medicines). However, once the medicines started the next day and her diet restrictions eased up, her skin condition slowly came back to normal in the next few weeks. I guess her extremely restrictive diet played a key role in improving her skin condition during the first week at the ayurvedic hsopital (even though it is simply not possible to continue with this kind of diet for more than a few days).

However, Ayurvedic medication demands that one follows a restricted diet since certain food types do not go well with the ayurvedic medicines. Hence, Aiyana has been asked to stay away from fermented products (inc yeast based bakery items) like yogurt, dosa, idli etc; all citrus fruits and vegetables like oranges, lemons, tomatoes; root vegetables like cauliflower, potatoes; other processed and refined foods like white rice and refined sugar; leafy green vegetables. She has also been advised to have everything cooked in ghee. As you can make out it IS a difficult way of life to follow since it does not involve only medication but also a whole lot of changes in one’s diet. In any case, she has been very cooperative and we have been able to follow most of the food restrictions so far.

Our goal

The goal of Ayurvedic medicines according to Dr Gangadharan (who is the Head of the Dept. and treating my daughter) was to strengthen her immune system from within so that over time her body was naturally able to bring the severity of her eczema within a manageable level. I will keep you posted on her progress and any changes as far as Ayurveda is concerned. We have been back in Mumbai for 3 weeks now and her skin condition has come back to normal. I will however have to continue with her Ayurvedic medication for some more time if I want to give it a chance to work. I will also be taking her for a follow-up to IAIM Healthcare Centre next month in order to assess her progress, change in medication etc.

The good, the bad and the ugly

It is always a case of a mix of good days and bad days for her even with her medications. And since there are various triggers to her flare ups, it is nearly impossible to pin point and avoid the the same completely. This leads to a  yoyo like swing in her moods making it difficult for her and all of us especially on those bad (and ugly) days and nights with her itching and inability to sleep. I have already touched upon this psychological impact (which can lead to lack of self-confidence and social skills) and I have described how I have been dealing with it in my daughter’s case in my post Beauty is not just “skin” deep- helping your child cope with eczema.

Let them sleep, for when they wake…they will move mountains

We have been grappling with sleepless nights ever since she was 1-year-old (even though her condition was mild at that time) and when you add to that the mild eczema that my 4-year-old son has as well, you can see that it leads to a lot of sleepless nights and fatigue for the entire family. It is an aspect of eczema ( and Atopic Dermatitis in particular since it affects children) that severely impacts a child’s well-being leading to lack of concentration in school and a lack of self-confidence amongst other problems. It also one issue the entire family (which has children suffering from Atopic Dermatitis) will have faced some time or the other. As a result I have been searching for a way to improve our quality of sleep (without further use of medicines) by reducing stress levels and learning relaxation techniques.

Mindfulness Meditation

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To this end I have been reading about a form of stress reduction technique called ” Mindfulness Based Stress Reduction”  (MBSR) program developed by Dr. Jon Kabat-Zinn at the University of Massachusetts Medical Center. It is meant to work by making one more “grounded” or “aware” of the present moment and simply means paying attention in a particular way: “on purpose, in the present moment, and nonjudgmentally” as described by Dr Kabat- Zinn. In this post, I will be just touching upon this topic since we have just started following the same ourselves.

My goal in trying to incorporate it in our daily life is very simple – to help my daughter reduce her stress and frustration levels and hopefully cope with her medical condition better with time and practice. The good thing is that one does not have to be a Buddhist to practice this though it has its roots in Buddhism, Taoism and yoga. Mindfulness is the art of conscious living so that you live a life being who you are already and not try and be someone that you are not. Hence, one’s religious beliefs does not interfere with this practice.

Meditation and coping

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I am using the book and CD combination- “Planting Seeds: Practicing Mindfulness with Children which is based on Thich Nhat Hanh’s (a Zen Buddhist monk) thirty years of teaching mindfulness and compassion. They are designed to help relieve stress, increase concentration, nourish gratitude and confidence, deal with difficult emotions and improve communication.

While we have just started practising this, Aiyana has been enjoying our daily sessions of “deep relaxation” before bedtime since it is helping to calm her (and me) down quite a bit and relax. While it is too early to comment on the results of practising this, I can say that it has made a slight improvement in her sleep quality. And anytime that she wakes up feeling itchy, the music is soothing enough to lull her back to sleep most of the times. I am also planning to use another well-known book for practising mindfulness meditation with children – “Peaceful Piggy Meditation” by Kerry Lee Maclean for the same purpose.

Be happy for this moment, this moment is your life

And in the end, this is what matters. How well we lived our life, how well we loved, how we counted our blessings along the way; how we learned to accept the things we simply cannot change and faced our most difficult moments. This is the lesson I strive to teach my children, one lesson that I am myself learning every day of my life.