Tralee

Managing M.E. - Speaker: Aidan O’Sullivan
Manor West Hotel, Tralee
Date: Friday 16th September – at 7.00pm.
The Tipping Point – Finding the Balance Between Curing and Healing for People With M.E. (possible course to follow)

The Tipping Point – Finding the Balance Between Curing and Healing for People With M.E.

I have lived with M.E for the last 15 years or more.  M.E. has many down sides but one of its gifts for me is that I have become a full-time student of health – physical, mental and spiritual.  I feel like I was drop-kicked into finding ways of coping and in the hope of healing went on a route of investigation and inquiry.  This is largely because the medical system provided little that worked for me.  With one goal in mind I had to set off on the journey of healing.  My original plan, hatched in innocence, was to heal myself fully from M.E and then write the book so others could do the same.  How humbling it is, fifteen years later, with thousands of hours and Euros invested in my health, to still be coping and finding the tipping point that won’t put me over the edge in everything I do. 

In my journey of healing I studied massage therapy, Reiki, nutrition, and I.E.T among other things.  I undertook a serious 5 year study of Tai Chi and Chi Kung and became certified as a teacher in these disciplines.  I worked in health food shops where on a daily basis I was trained in the modalities of nutrition, supplementation and herbal remedies.  I spent many hours in counsellors’ offices, tried homeopathy from several practitioners, and was available as a guinea pig for many of the new alternative therapies as well as the allopathic tests and medicines that are offered.  I took out loans to get some sun in the depth of winter and to do meditation and healing retreats in foreign places.  I went to see the great healer John of God when he was in America and I tried many healers at home in Ireland.  No stone was left unturned on this journey with M.E.

In the early part of my journey I travelled blind without too much information about the illness, mostly because there was very little information available.  As I approached  scientific research  more studiously the reality dawned upon me  that there is confusion evenamong  scientists and doctors about whether we are dealing with viruses or bacteria or a combination of both in the disease process of M.E.  And since these disease organisms can arrive in great numbers, identifying which virus or bacteria, or in what combination, is like looking for a needle in a haystack.  All in all what I find now is that this is a multi-faceted disease and most treatments are very much in the experimental stage .

Having M.E. makes us very vulnerable to any claims for cure that people are offering as we want to get past these persistent symptoms and want to get on with our lives.  We are also very vulnerable to other peoples’ criticism and doubt about whether we are ill at all.  It is a disease where we can often look better than we feel so people express confusion about what they observe. There are so many symptoms  of illness that appear on a daily basis in our lives that we need a multi-faceted approach to coping that include our physical, emotional, mental and spiritual health.  It also includes our relational health and finding support to cope with the illness on an ongoing basis. 

Upon awakening in the morning my first experience is to check in with my body and see how it’s going.  I’m sure that is the experience of most people with M.E.  There is a fine line between over-attentiveness and over-concern toward our symptoms and dismissiveness and we walk that line every day.  Even too much of a good thing can be a bad thing for us.  This is why we have to be aware of our tipping point, whether it is in the area of the food we eat, the company we keep, the amount of exercise weengage in, how much we rest or not, how much we give of our energy, our stress levels, how we supplement with vitamins or herbs or homeopathy, or how allopathic medicines are affecting us, etc.  The fact that we are all unique biochemically, personally, emotionally, spiritually means that there is no one size fits all cure.  We are, like all human beings, in a constantly changing dynamic but for us the path is narrower and we reach our tipping point more quickly and acutely.

While I have not been able to find a cure for my M.E. and I can’t say that I am 100% well, this journey has delivered great gifts of health and balance in my life at all levels.  The limitations of this illness from an early age ensured that I had to become conscious of my life-style and habits.  While sitting at a bar downing pints became off-limits, the road to meditation, mindfulness and Tai Chi opened up whole new worlds to me. I relate easily to the mystical in all the spiritual traditions encountered in my travels.  I realize that I have to make the most of the suffering that I undergo on a daily basis and spiritual teachings are necessary to finding the perspective to cope with this illness without a known cure.  My overenthusiastic, omnipotence of youth has given way to a more mature and reflective self, who is still available to healing and cure and is working toward it on a daily basis.  To do this, is again, to find the tipping point between naïve optimism and resignation; the middle way between these is the nature of the journey.

I would like to share, with my fellow travellers with M.E., some of the most crucial ways that I manage the illness while living as full and hearty a life as is possible.  Among my great pleasures in life is the opportunity to cook good food.  I don’t use a recipe but the ingredients come together in a wonderful way, that surprises even myself as I offer up a fine meal to friends most evenings.  I would like to offer what nourishes me in this illness in the same spirit.  Theories of health and wellness abound and because each of use has a unique biochemistry and temperament we are responsible to inquire into what works for our own health within our capabilities to do so. The reader is invited to take what they like and make their own of my offering and make their own healing package together with what they have learned already themselves.

Nutrition for the mind and body is well-documented these days by people like Patrick Holford, Abrham Hopper and others.  The connection between food and physical health and food and mood is clear and knowing this information is extremelyhelpful in keeping our head above water and having some sense of control inthis illness.  In the early 70’s orthomolecular medicine advanced vitamin and supplementation therapies for mental and physical health with very good results for many people.  You can find all this information on YouTube and on the web.  The understanding of mental health and emotional well-being has advanced well beyond the old ideas of mental distress being taboo and not a part of everyone’s life at some stage. I have found a lot of useful and very enlightening information in this areathat has helped me to understand and manage the anguish of living with ME on a daily basis.

Having a spiritual framework for my life, gathered from many traditions and religions is a crucial part of my healing journey.  I have had to make a clear distinction between religion, the organized practice which differs from culture to culture, and spirituality which I found at the core of all religion in fact.  Spirituality for me is a reality that underlies everything, the whole of existence and it gives meaning even to the very difficult burden that ME presents.  While I respect that religion is a necessary expression for many people, spirituality appears to me through nature, other people and my own recollections and rituals that comfort me on this journey.  I have found that my prayers are always answered and sometimes the answer to something I really want is “no”. This “no” often leads me to deeper places and makes me realize that I am not in charge of everything but I can take charge and manage the things within my control like my physical, emotional and spiritual wellbeing.  So having a clear sense of the food and the exercise I can manage in a day, the amount of contact with others I need for psychological nourishment, and the time for my soul and spirit is my responsibility.  But I have to surrender to rest to a Powers greater than myself in order to get the full picture and keep my tipping point in mind as much as I can.  I fail on a regular basis as I over-do, crash and to compensate become inert and passive and not do enough.  Even with my constant study and the hard earned fruits of practice, healing , research and spiritual seeking I have not found the magic bullet for my ME.  But I have found frameworks that make it a journey of growth for myself, despite setbacks every day, and these may also be helpful to my fellow-travellers with ME.

A Summary of Some Things That Work For Me:

1.     Quality of sleep is very important as is the quality of relaxed awareness when awake.  Many modern studies have shown that people with ME do not reach the level of sleep where repair is possible.  As we know the amount of time spent in bed does not correspond to feeling rested. So working on having a relaxed state, through relaxation techniques, mild exercise, music, etc. isvery important.

2.     A Nutrition program tailored to the individual, respecting things like blood and metabolic type, tendency toward allergies and past medical history, e.g. medicines taken as a child that might have affected immune-system functioning.

3.     Mental-Emotional healing .  Psychological nourishment is as important as physical nutrition and for those of us with a chronic illness it is important that we have place to go and people in our lives who give us space to be wherever we are in our illness process.  Having people we trust and can speak with frankly is therefore crucial to our healing journey.

4.     Spiritual Health.  Spirituality is a very personal journey for each of us but for those of us with a chronic illness such as ME it gives us a framework to make meaning out of this difficult journey. The persistence of this illness can leave us feeling despairing at times and knowing that we are on a journey of “progress and not perfection”, and that we may be gaining spiritual muscle and helping others through our suffering isvery important.  The archetype of the Wounded Healer is and important image for many of us.

5.     Work as a part of life.  Finding the tipping point in doing some meaningful work without overdoing and setting ourselvesback is a struggle we all have.  While there are those of us who are completely unable to work, many of us have a little extra energy at times that needs to be used creatively.  Being tuned into our own gifts and finding ways to express them is an important part of the journey with ME.