The blessing of autoimmune

The blessing of autoimmune!

There are many social network forums about autoimmune conditions. Answering somebodies question a few days ago brought to mind my lifelong experience of dealing with autoimmune implications first hand and it got me thinking about my autoimmune experiences over the last few decades. Since so many seem to be in shock upon their diagnosis, frightened, in pain and almost hopeless at the prospects, some of my experiences might help understanding and give some hope with something in which confusion is almost the means of its nourishment and perpetuation.

For a seven year old boy living in our home fronting the beach of a tidal estuary was simply an idyllic lifestyle until 2.30 one winters morning when mother woke me, telling me to get dressed in a hurry. We were leaving immediately as the sea was coming in! I looked out the window and sure enough, by the light of the full moon, the beach was submerged under storm tossed waves flooding over the sea wall not thirty feet from my bedroom. We left our home and the life I had known was completely lost along with all we owned and the drowning of my grandparents.

About fifteen years later after sudden temporary blindness amongst other symptoms, my experiences of the medical profession started off with my diagnosis for sarcoidosis - over decades my autoimmune condition progressed to Isaacs Syndrome, Neuromyotonia and a couple of years ago I have been told I am up to Morvans Syndrome, what next? I am now coming up seventy and mother made it to 91, I hope to do at least the same.

Various forms of medication and management over many years helped me cope or so I believed at the time. Over recent years my viewpoint has evolved, I have come to see my changing conditions as my body doing its very best to protect me following many years of inappropriate self management, nurture and nourishment which of course amounts to abuse. My life had started off as a combination of childhood traumatic experience in a natural disaster, post traumatic stress, family crisis, unintentional emotional abuse and poor nourishment. Mine is not unique or even particularly extreme experience, just watch the news any day to see hoards of people being given life changing experiences, character building experiences, without judgment good or bad "what does not kill me strengthens me"!

Through this abuse my body became sensitised to many, many things it detected, some physical, some emotional, some what we have come to see as 'normal' in our world today. By its experiences my body had been conditioned to quite naturally be alert to even minor signals of impending abuse. It developed extreme sensitivity and responses to what amounted to my misguided management of myself, my choices driven by my current beliefs and values often ignorant of true consequences.

Progressively, as I became ever more 'successful' I also became increasingly very sick, very close to death at one point as I didn't know how to pay attention and respond to my body's messages. A pain in my side one day, it just needed some brandy so I could cope with that days meetings - it was only two days later, a ruptured gut with gangrene and septicaemia was more than an emergency! It can happen folks!

As my blood pressure ebbed away in my hospital bed and nurses were working hard to bring me back from going over the brink it dawned on me this very near squeak was a show stopper, unavoidable as a salutary message.

So I had to study up even more on my condition, learn to accept that things might not be as I had believed them, relearn how my body was naturally designed to function and how my expectations had exceeded, relearn about the medical profession and their medications and then learn a new management strategy that deals with cause. We are taught to deal with symptoms, doctors like to prescribe drugs to manage symptoms and this approach makes changes and provides some help for a while? But none got to any root cause because that is not the remit of this style of approach. Its all a matter of perspective and insight.

Like many other people I assumed and expected that I could drive 50,000 miles per year, fly around the world at will, plenty of people do it, drinking soda, snacking on convenience food as I travelled, itself designed to be addictive and disruptive of my bodily function. My whole life was structured that way and the whole support system is designed to enable me to do it. What a great life, I was a great success but my body was growing ever more insistent that it did not like what I was giving it, coming up with ever greater means of attacking me, attempting defence against the perpetrator, autoimmune in action!

My actions and lifestyle amounted to simple but comprehensive inappropriate self management. In a society with its own priorities making demands upon me and without limitation, the shocking truth was an inability to provide for my body in the way that it was designed to function. Slowly I have learned one technique after another to give my unconscious being and body more consideration, listen to its responses and act to look after it. Daily I fail in an environment no longer properly supportive of my wellbeing but overall I make slow progress to nurture and nourish my body with things it finds naturally in harmony with the way it was designed to function. I recognise that each man made fix is just another cause for autoimmune escalation even if it appears to offer immediate temporary relief.

The body is infallible with perfect self healing mechanisms when given respect and opportunity but it does require me to know its needs and design parameters. My body needs me to make choices for its support, nourishment and management in harmony with its natural world and values - anything else and it feels abused and attacks its abuser! That's me, it's real pain it attacks with, it hurts but is just a message to be understood.

Everybody has a unique character and individual way of being. It's taken 69 years to condition and train my body this way, it now has many unique talents and abilities, it even knows how to get my attention! It doesn't need curing, it needs understanding, respect and proper support so that it can support me. What others call chronic disease is my body's adaptation to its experiences of life dictated by my reactions as this unique character. There is no good in trying to drug me into what others see as 'normal' when my character just can't see things that way. If there are any normal people out there they have not had my experiences. By its choices of response my body unconsciously rejects their 'normality', ultimately having come to recognise medications as the next trigger for attack!

It took many years to understand that I have a wonderful life with much fulfilment in which my 'disease' is my blessing! Yes its painful and very risky at times. It all depends upon how understanding and submissive I am to my individual needs which express themselves in this condition. What support I can get from others is dependent upon how clearly I can explain my individuality to them - its nothing like 'normal' and many can't hear it or want to cope with it - can't blame them, its often hard to see the joy in it all! My body is miraculous, adapting to whatever I give it but when my ambition or the ambition of others has not properly considered the demands it makes on me then I do become my own enemy and my body responds accordingly.

Spontaneous remission can occur for varying periods whilst long term damage may remain with ongoing changes, often leaving me wondering just what is going on? It is a never ending adventure in the unknown and unknowable as my life finds its own path from one uncertainty to the next. Some days I wake up to find it all exciting and enjoyable whilst other days blackness is hard to deal with, a lifetime of pain can do that. For me and people like me it's become obvious that there is no 'cure', no magic bullet or drug that does not have its own consequences,  just ways for understanding to cope with the current circumstance and move on, listening to the next message the body comes up with, the next symptom to be interpreted, usually pain. Others don't have this blessing, I must be the lucky one! Maybe you are too?

Weasels

Andy Ellis writes :

Recent sketch idea for a painting of a weasel trying to catch a wagtail . Seen a few weasels in the dry stone walls up here and my best view was a few years ago when I was sat in the car in a gateway when a rather athletic weasel proceeded to climb up the lichen covered gate right be my car window . You have to admire such tenacious little predictors as these . A weasels skull is said to be able to pass through a wedding ring , whether this is fact , I am not sure , ? ... Depends on the wedding ring I suppose ...?

Andy's spectacular accompanying sketch brings to mind a couple of related surprises.

A hazy, windless, hot autumn morning, a light greyish blue sky, the colour of the bloom on unripe damsons,  I was flying my female peregrine Judy on the local airfield. I suppose she would have been about four years old at the time and had turned into a good dependable gamehawk who on such days as these might mount to tremendous pitches and go out of sight upwards. Too high for practical hawking but a wonderful experience in its own right. On such occasions the only sign of her approach was a roaring, ripping canvas sound as she stooped. I love this time of year before winter has arrived and the dahlias are gloriously still in full bloom, blackberries a regular snack as we hawk, picking a few whilst the hawk gains pitch and again after the  flight is over. All seems perfect and complete somehow. 

For falconers in the lowlands this early autumn period, before the real hunting begins with the start of the pheasant season, is an enjoyable time of getting hawks fit, bringing on youngsters and enjoying the last of the warm weather, often in an Indian Summer preceding seasonal change often quoted in Jorrocks observation ' Hurrah, blister me kidneys! It's a frost - the dahlias are dead, now we can go hunting.' Master of the Handley Cross Hounds, John Jorrocks got so excited at the prospect he danced a jig in Regents Park, his relations concluded he had gone mad and had him committed to a lunatic asylum!

On this day Judy was off about half a mile and gently working a thermal off the Tarmac of the main runway. She had got to about 1500ft (500mtrs) with every sign of going much higher when suddenly she tracked towards me a couple of hundred metres before folding into a vertical teardrop straight at the paving below! Nothing had flown, our covey was still clamped in the fresh drilled soil, it was strange, there was no throw up and Judy was no longer in the air. Scanning with binoculars showed she had settled on the pavement. Swinging the lure produced no response and she just stayed there with no sign of moving. I could have walked to her but instead got into the car and drove to her location, swinging around to come up alongside her.

She was standing on one leg whilst looking into the other foot but there seemed to be nothing visible? Obviously the flight was over and so I dismounted, a pigeon breast in my fist I started to approach but suddenly recoiled as the acrid smell of her prize overwhelmed me - she had caught a weasel. I recognised it instantly recalling the time about thirty years before when I had been so delighted my Gos had caught a stoat! Little did I realise the power of that aroma until I had spent days trying to rid my equipment, my clothes, my hawk, my car and myself of its nauseous pervasiveness. No matter what I tried it simply did not work and in the end I had to replace everything possible whilst vowing to do all I could in future to avoid a recurrence.

Now here I was, years later, with a high flying game hawk who for some reason known only to her had decided that the novelty of this opportunity was just too much to resist! Judy's foot was clenched around a small, tan coloured, furry ball, clearly dead, but still with potential to ruin what had hitherto seemed such an enchanting day. As an imprint Judy was much easier to handle that that passage Gos of years gone by and as she was somewhat intent upon sharing her success with me I at least had the opportunity to take things slowly, wait a little until her lust subsided a degree or two, get her attention with the more attractive meal of a fresh pigeon breast. She was keen to get on the fist, flying to it and landing with one foot, the other still holding her prize and overwhelming me even more with the stench. A female peregrine obviously has little sense of smell even though their taste is sharp enough when offered different foods, Judy seemed entirely unphazed by the circumstance.

She was soon into her meal and as it became awkward for her to feed on one foot she adjusted herself, released her grip on the small body and I was easily  able to ease it over the back of the glove and let it drop to the ground.

A weasel is such a delicate and smartly dressed little animal, attractive to look at but potent in the extreme with its defensive aroma. We walked smartly away leaving it where it had fallen. The following day it had disappeared, cleared up by the crows no doubt, obviously they had little sense of smell either! We drove home with all the car windows wide open, I held the glove out the window in the wind and then  gave Judy a bath on the lawn, also showering her back with the garden hose! In the morning there was still a mild aroma in the mews when I went to the screen perch but by the end of the day it had mostly dissipated.

She never caught another! And now synchronicity takes a hand as I write, Jenny calling me out of the mews " its not every day you see this - there's a weasel on the lawn!" And it was, there outside the conservatory seemingly playing but more likely searching and working out some lingering scent. It was  the first we have seen in the garden in 41 years.