Every moment, with Very Severe ME

Every moment is a  moment of extreme limitation
Every moment is a moment of constant and severe physical torment
Every moment is a moment of total constant continuous pain everywhere
Every moment is a moment of unpredictable reaction
Every moment is a moment of feeling severely ill.
Every moment is a moment of numb limbs.
Every moment is a moment that the environment is hostile
Every moment  is a moment where noise is harmful, damaging and dangerous.
Every moment light pierces and impacts painfully.
Every moment  is a moment that the world is inaccessible. 
Every moment the environment is hostile and unpredictable.
Every moment is a movement away or towards paralysis.
Every moment is a moment of inability.
Every moment is a moment of brain fogged unreality.
Every moment is a moment of difficulty interpreting incoming information.
Every moment is a moment of physical difficulty.
Every moment is a moment of physical distress.
Every moment is a moment of  profound disability.
Every moment is a moment of need.
Every moment is a moment of incomprehensible complexity.
Every moment is a moment that harm and deterioration can be triggered instantly.
Every moment is a moment where environmental stress can be catastrophic. 
Every moment is a moment of uncertainty.
Every moment is a moment of challenge.
Every moment is a moment of unutterable illness.
Every moment is a moment where expression is incapacitated.
Every moment is a moment where desire and ability do not match.
Every moment is a moment where demand and expectation are unreasonable. 
Every moment is a moment open to misunderstanding.
Every moment is a moment open to misinterpretation.
Every moment is a moment open to distressing reactions.
Every moment is a moment where you cannot do what you want to.
Every moment is a moment of medical neglect.
Every moment is a moment of fractured reality.
Every moment is a moment of unpredictable experience
Every moment is a moment of enforced isolation from normality.
Every moment is a moment of separation from people.
Every moment is a moment of desperation for stillness and quiet.
Every moment is a moment that you do not know for certain what you can or cannot manage to cope with. 
Every moment is a moment where energy is dissipated, lost or suddenly gone.
Every moment is a moment followed by deterioration and post- exertional reaction.
Every moment is a moment you have to try and figure out what you need to survive.
Every moment is a moment that needs to be totally flexible in approach and response.
Every moment us a moment where you cannot predict what comes next.
Every moment is a moment where you cannot  rest because rest is unachievable.
Every moment is a moment where you cannot rely on what you know, because something new and worse happens in your body for you to deal with.
Every moment is a moment where you need help but cannot access it as you need it.
Every moment is a nightmare of physical torture.
Every moment is a moment of complex symptom interactions and underlying physical malfunction.
Every moment is a moment where you do not know who is safe to trust.
Every moment is a moment when the answers are not obvious.
Every moment is a moment where the underlying disease has not been properly investigated. 
Every moment is a moment where systems fail you on some level.
Every moment is a moment where you are overlooked and buried in a sea of fatigue language irrelevant to you.
Every moment is a moment of impossibility.
Every moment is a moment of broken communication pathways .
Every moment is a moment of blocked pathways to ability and connection.
Every moment is a moment of  knowing that Very Severe ME is  
not on the political agenda.
Every moment is a moment of knowing that Very Severe ME is not in most people's minds, awareness or experience.
Every moment is a moment of knowing that there is no national universal biomedical response to people with Very Severe ME .
Every moment is a moment where you know the government is not dealing with the vested interests underlying ME policy.
Every moment is a moment where you know that the misinterpretation of ME as a fatigue illness leaves the most profoundly ill still open to mistreatment and at risk of harm.
Every moment is a moment  that you are waiting for proper medical validation and explanation that simply does not come. 
Every moment is a moment you pray you do not need additional medical interventions that you simply cannot engage with and that will harm you in trying.
Every moment is a moment that people get further away from engaging with you.
Every moment is a moment that you are less seen and known in your community.
Every moment is a moment that your body does not feel ordinary or respond in ordinary ways to ordinary things. 
Every moment is a moment of knowing that people just don't get it.
Every moment is a moment of knowing that people simply cannot comprehend or accommodate the severity of your illness. 
Every moment is a moment  where, whether adult or child, you can be sectioned for a mental health illness that you don't have because of misinformation and lack of medical tests, treatments and knowledgeable consultants.
Every moment is a moment you can be mislabelled and denied.
Every moment is a moment that you simply do not know if you are dying and no one can tell you.
Every moment is a moment of injustice.

Greg & Linda Crowhurst 2013
Stonebird : the lived experience of Severe ME