Firstly, I am so glad I can be of some help to you when you are dealing with such unpleasant symptoms. Many of my own symptoms are respiratory rather than pain-related, but I do get all kinds of nerve pains due to the unstable nature of my hypermobile spine. This week I have had some trapped nerves in my neck, and it felt like a timely reminder of just how important self-care strategies have been for much of my adult life. This is the reason I hand out tennis balls and mini foam rollers to the people who come to see me for Functional Integration lessons. Some problems respond well to movement alone, some need a little bit of extra attention.
Finding ways to heal myself became the only sensible approach once I realised that the health issues I was dealing with required medications that would be harmful in the long-term. I now consider this to have been a lucky break. Hypermobility (Ehlers-Danlos Syndrome) is often characterised as extremely debilitating, but thanks to my own direct experience I know there are a lot of us out there managing pretty well considering what the worst case scenarios can be. I am on a mission to encourage all those with auto-immune-related illnesses to do as much as they are able to take the pressure off their immune system, and lessen the severity of the symptoms they are experiencing.
I parted ways with the medical paradigm many years ago–my doctors would not accept that steroid inhalers were triggering my trachea infections (which then in turn generated acute asthma attacks), and after a few frustrating discussion I became a refusenik. I should probably also mention that pain killers don’t really work for me, which makes it very easy not to bother taking them. Back in my youth a friend training as a biochemist told me that coming off dairy might help my respiratory problems, and that discovery got me started on finding ways to look after myself.
I became aware of the benefits of ketogenic diets when I first came across the science in the 1980s, and I experienced an enormous boost in my own vitality when I went on the Atkins diet for the first time. This means I am very confident about the possibility of improving one’s quality of life with the appropriate dietary changes. I have also recently demonstrated to my own satisfaction that working directly on calming the nervous system also helps speed up improvement with even very long term chronic conditions–in my case asthma and allergic rhinitis. I am almost entirely free of the need for asthma medication and no longer suffer asthma attacks and chest infections with every virus. Somewhat frustratingly I am currently having more frequent head colds than in the last few years. As I have been immersed in this process for so long I am all too familiar with the way lifestyle changes can lead to a sense of making two-steps-forward-and-one-step-back; in my own experience the healing path meanders and winds back on itself a lot. I have so much experience of the different self-help strategies out there that I need to balance my enthusiastic recommendations with an awareness of what the person I am speaking with can manage at that moment, and this is one of the reasons why I am producing more written material about self-healing, so that I can present all the different aspects of the process in a more ‘digestible’ manner.
I think I mentioned Dr Stephen Phinney as a great exponent of the “well-managed” ketogenic diet, and one reason I think you might benefit from watching his lectures is that he is well-aware of just how much water and salt is needed on a ketogenic diet in order to avoid what used to be called “The Atkins Flu”. I discovered that upping my water intake improved my health enormously many years ago, and I keep it as high as I can manage, but the salt element had slipped my memory and now I make sure I have a little extra in the morning with my first glass. It is very possible that dehydration is an element of your problematic response to fasting–very few people drink three litres a day without making it a priority, plus the misleading propaganda against a sensible salt intake is still prevalent. It is important to realise that changing our diet gives us a way to steadily lower chronic inflammation without having to stop taking any medications that we find helpful to get us through the day. I still keep my asthma medication to hand, and I am grateful every day that I don’t need to use it.
With regard to the psyche side of the somato-psychic health equation, as much as possible I prefer to recommend experts with a strong scientific background, as most people are more comfortable with a science-and-evidence-based approach. I often recommend Gabor Maté as he is so well-established within the medical community. It is helpful that he does not pressure people to come off medication, and he has lots of evidence to share regarding the stress-related elements of auto-immune diseases of all designations. I did not take to his manner at first, but I have come to recognise that he is extraordinarily kind; he expresses great compassion and understanding for the everyday struggles we are all dealing with. My own aims as a teacher are always to respond with kindness and compassion, while at the same time being able to say what needs to be said in an open and honest manner, so he is a great model for me. He uses examples of well-known sufferers of a particular illness, which means their personal histories are already available to the general public, and thus he is not risking anyone’s privacy by discussing their case history in a public forum. Gabor is confident that even severe health problems can be improved by working directly with emotional/social/behavioural interventions, and he puts a lot of emphasis on how important it is to take “response-ability” for your health without feeling the need to take the “blame” for it as well.
My aim is to encourage you to feel that your unwellness can respond positively to changes in those aspects of your life that you are able to take charge of, i.e. diet, and emotional health, and fortunately this approach is becoming less radical as medical science begins to acknowledge that human beings are “large complex biological systems” with bio-psycho-social health requirements that are all essential to our wellbeing.
I have noticed that many science-based health commentators become more spiritually focussed as time passes, and I suspect this is a natural transition. The term “health” derives from the old English word for whole, and thinking in wholes is finally back in fashion after 200 years of Cartesian Dualism and a western science community dominated by a reductionist model with a limited concept of the relationship between cause and effect. Making connections is the way the right brain organises our experience, and it is the side of the brain that feels awe, and what for want of a better word we often refer to as a sense of “one-ness” with both humanity and nature. The left side of the brain is the language-generating side, and it loves to win all the arguments, as Iain McGilchrist explains with such clarity in this excellent animation:
Those of us who are naturally more analytical are often better at avoiding the sort of “hippy-dippy” language that implies a lack of scientific rigour––we are familiar and comfortable with the mindset of the left-brain information-processing style, so we know how much terminology matters when negotiating a change in the dominant paradigm. Even very science-focussed teachers can slip into the imprecise language of the right brain (I hesitate to point fingers but am happy to gossip). Jill Bolte Taylor’s TED talk is a great example of someone who straddles the two processing styles with elegance, here it is if you haven’t seen it yet:
As an important aspect of the healing process is resurging symptoms–and those with autoimmune issues are already experiencing a wide range of symptoms–I like adaptable healing strategies that can be paced to suit the individual. I am at ease with experiencing the return of older symptoms as an unavoidable aspect of improving my health, but that does not mean I am unsympathetic to those who do not feel the same confidence that these temporary reversals are for their ultimate benefit. As an example I avoid headaches when I am fasting by drinking lots of water and nibbling on salt granules–extra delicious during a fast!–and when I feel determined enough to stay off the wheat I do the same on a strict ketogenic diet; in fact to a certain extent it is the new symptoms I experience that help me recognise that what I am doing is definitely working. Thanks to years of homeopathy I am very familiar with the “healing crisis” and celebrate it as a sign of success.
I do wonder if, for you, stories of healing would be a useful resource. One of the reasons I value Tim Park’s Teach Us To Sit Still so much is that he makes it clear that the path to better health is slow and steady, rather than a dramatic sequence of spectacular “breakthroughs”. There is a wonderful talk up on the net from a Doctor who reversed her daughter’s autism symptoms completely only once she eliminated every last scrap of gluten from her diet; her daughter was so much better after an initial change of diet that her mother continued to strive for a full recovery. I know I am repeating myself when I say that the medical community is way too wary of creating “false” hope, and far too keen on generating what may well actually be a thoroughly false sense of “despair” and resignation.
There are some great talks up on TED, sometimes with a dire warning to discount them for a supposed lack of scientific rigour. The warning about Dr Wahl’s recommendation to eat lots of vegetables seems to me to be particularly absurd, making her suggestion that some of TED’s funding is from sources with vested interests seem quite likely as an explanation (they apparently used to take money from Monsanto, but the online evidence I found easily a few years ago has now disappeared).
My next student is due, so I am sending this now, with a link to the wonderfully spirited and inspiring Robert Lustig on breaking the addiction to sugar–let’s keep talking!