Stonebird

I have never been able to get even close to describing the full horror of our situation, the never-ending suffering, the overwhelming burden of neglect and misunderstanding, the almost total isolation. When I take the dog out, or go cycling, I seem to enter a parallel universe, where I seem to be regarded, not quite a bachelor, but certainly not as my default state of “Greg and Linda”. So, some will ask me where I’ve been on the bike, I tell them the sea, 4 miles away. “It’s a lovely day for it...” is their cheery response, as I wheel the bike around the back, not knowing just what agony my wife will be tormented with. All the while trying desperately not to make the slightest noise that can plunge her into dangerous deterioration. Making sure, for example, that I unclip my bike helmet before entering the house and undoing the noisy velcro strips on my jacket. What, I wonder, sometimes, would I say, if I was REALLY asked -“ how are you?” I wonder would I rage or...

Why would anyone want to say they have got "ME" ? It is a completely neglected disease treated as a non disease, the physiology underpinning it is not identified or sought. The decades-long misdirection of psychiatry makes it extremely unsafe, today, for anyone to carry an ME diagnosis. Who can even say they have got “ME” ? Without physiological confirmation and with varying definitions used, no one can safely say what they have got ! All the time you have a group of people identified by limited symptoms, without recognition of the underlying disease pathology, the label “ME” is rendered virtually meaningless, especially in a biased health service, offering inappropriate psychiatric therapies as treatments. In all honesty, no one, right now, is currently safe because: 1. they truly do not know what is physically wrong with them 2. they do not know why they are so very ill  3. they do not know why they are still denied proper recognition. Saying you have M...

This is how my wife starts every day; the depth and scope of her agony, the muscle spasms, the paralysis, the piercing pain, the excruciating noise sensitivity, her total physical inability, lie way outside  the scope of ordinary experience and comprehension. THE TORTURE OF ANOTHER DAY The layers of dense heavy fog-like emptiness constrict and crush me. They feel like they are a mile thick. A mile thick between me and the outside world. A mile thick between me and you A mile thick between me and everything A mile thick between me and anything. I lay, crushed within this invisible boa-constrictor. The pain pierces every part of me. It screams. It burns. It writhes. It itches. It crawls. It intensifies. It throbs incessantly. It demands total attention. But then there is the overwhelming weakness emptying each cell, each muscle strand, each muscle. Everything is interconnected. Nothing is working. It inhabits my face My eyes My lips My smile is gone My mouth is wonky My chest m...

The person diagnosed with Severe/Very Severe ME is not having the same experience of the world as  you are; that is so hard to understand and to deal with. The care someone at this level of illness requires is complex, multidimensional and holistic. It takes enormous empathy, understanding, skill and commitment. At all times you need to be aware of the person, of the environment – and especially in Very Severe ME, profoundly aware of the interaction between them. An ability to cope with your presence or help can so easily suddenly shift and change without warning. Try to learn any signs! Here are a few ways you can really make a difference : 1. Never, ever think that that you know better about the person’s reality/experience than they do themselves - accept what they say, when they describe it to you 2. Always aim to be fully aware of the person. 3. Don’t let your needs and thoughts distract you or get in the way of providing good care. 4. Aim to be present in each m...

With Severe ME, it may not be enough to want to help, it is knowing: 1.When to help 2.How to help 3.What does not help. There is a great need to be flexible, to be able to stop, if asked, to come when needed, to be willing to try again, to wait and to try again patiently if the person cannot cope with the interaction in any one moment. The person with Severe ME needs what they need, when they tell you, in the moment that they tell you. Their need may often be extreme and require an immediate response, in order to try and avoid symptoms deteriorating. You have to constantly remember and be aware that the reality of the person with Severe ME is hyper-sensitised and their experience of the world is not the same as yours. Here are six essential skills you need, to care for someone with Severe/Very Severe ME : The skill of listening to instruction and following it accurately.; I cannot stress enough how critical this is. The skill of understanding how to be with someone...