hEDS and HSD – “complex syndromes”

A groundbreaking new study has highlighted the multi-systemic burden of living with either hEDS or HSD along with the considerable financial and circumstantial costs associated with managing these conditions and seeking appropriate medical attention in a system that still holds an extremely outdated, shortsighted and even biased concept of how these conditions and their symptoms manifest in people's lived experiences. Here's hoping this new study paves the way towards a complete overhaul of the diagnostic process and a much more accessible "joined up" approach to symptom management.

On oxalates, emotions, self-protection, autism and releasing: a hypothesis

Exploring the idea that certain chronically painful bodies have formed the habit of storing oxalates (toxic anti-nutrients) from common food sources in order to protect us when, really, this only does great harm...and how to get out of the subconscious mindset of vulnerability in order to heal.

Coping with sadness for what has been lost through chronic health

There comes a time, in chronic illness, where you have to address a profound need to be left alone, to carve your own space, time to put down all attempt at social skills to go mute and self-focused, devoid of all expectations from others to do or react or say the right things and just "be" in the dark void with whatever it is that is happening to you. There has to be time and space for you to pull into yourself, to lick your own wounds and to grieve your own losses which, though less overt than an actual "death", are a kind of bereavement all of their own...a deep sadness for the health you once had, the person you used to be, the hopes you once nurtured. This, like any bereavement, takes time and space and solitude enough to process. My craving for solitude is extremely high right now, perhaps no different to how any wounded or traumatised mammal will withdraw to its den in order to attempt to self-regulate its highly overstimulated nervous system in a way that can only ever be done by curling up, alone. No amount of kind gestures or people wanting to fuss or help out can play substitute for this need to be alone and look our current state in the eyes, to intuit what we most need and to search for the means to initiate the body's own healing process, which is not something you "do" but, instead, patiently wait for with whatever small iota of faith that you have left.

On oxalates, glutamates, autism and DNA

It seems that autism does lend itself to glitchy handling of oxalates, glutamates and some other dietary factors including omega 3s and certain vitamins, with broad ranging effects on health, pain levels and mental wellbeing. Piecing together some of my own detective work to iron out life-long struggles due to dietary factors, hoping to shed some light for others.

A place for strain/counterstrain therapy in EDS hypermobility

In Ehlers Danlos, muscle spasm and rigidity is a compensatory measure for hypermobility, to stabilise the joint. As such, it stems from a different cause to what is typical (not tightness as for most people but a response from the central and peripheral nervous system) and thus requires a different approach, but what? Exploring the possibilities via therapy and listening to your own body as a primary approach.

The fascinating cross-over of ADHD and chronic illness (and other unsolvables)

I was at an outdoor concert in an idyllic setting listening to some of my favourite music and yet, less than 5 minutes into it, I realised some part of me was screaming an existential scream, knowing I was going to be sat there like this for the next couple of hours. Admitting I have ADHD, that I am wired to need more dopamine than most, that I am rewarded by all kinds of stims (and not all are created equal...plus some are much harder to come by when your health is compromised) is proving to be a massive step towards understanding chronic illness, how it came about and why it perpetuates.

Seasonal health turned into “season of growth”

Do you have marked seasonal difference in your health symptoms? Many people do! However, when we learn to accept them, know them and work with them we get to find a new kind of equilibrium in spite of them, and that brings its own seasonal gifts.

How does chronic pain start…and how do we get out of it?

With renewed clarity, I find I can see the path that led into many years of chronic pain...and the way out of it. Sharing some bullet-point thoughts on this topic, to help and inspire you, for the start of this potential-filled new year.