Brutal and Cruel : The Experience of Paralysis in Severe ME

If you have never had paralysis, you will never understand the horrendous impact, the multiple cloying sensations, the seething disappointment, the utter desolate loss of ability, communication,connection, contact, the brokenness it creates within and without you. Broken ability to move,to speak, to reach out, to do anything at all,no matter how small or seemingly insignificant, even scratch your face or move your finger, blink your eye or swallow. Let alone touch, hold, call out, explain, tolerate, bear physical contact or even presence in the room.

Every noise, already a torment,slices through you, causing internal mayhem, every exposure to light, which hurt indescribably before you were paralysed, burns you inexplicably deep inside your head. Every movement near or past you is like a slap, a push, a confusion, a shake to your whole system. Every exposure to perfume a mind - numbing, nauseating, gut hitting, head banging experience.

The bed, never comfortable to start with, becomes harder and harder, your heels, your limbs, your hands, your back, your head, your neck, become pinioned to it, pain intensifying, invading, increasing inflammation and agony.

The seat, equally so, with feet trapped to the floor, simply, impossibly glued to the ground. Back muscles screaming, unable to hold me up.

Paralysis through sleep or rest is relatively peaceful. It creeps into you, while you do not notice. Paralysis caused by noise or shock is brutal, cruel, suddenly forced upon you, creeps up your limbs, your body, into your face, while you are awake. Violent, horrible sensations, burning, throbbing, screaming muscles, pain increasing higher still?

Coming out of it is a horrible as being in it. You have to try to move. You will it, but nothing happens. Eventually you might be able to manage a toe wiggle or in time, perhaps one foot. Repeated and repeated, one toe at a time, you wriggle them, hopefully, till somehow it breaks is hold partially, for a moment, maybe on a limb or a group of muscles. You might be able to turn over, to swing round, to move your feet. You might be able to get to the toilet, or take your pills, or swallow some water through a straw. But it does not mean it has left you. It never leaves you.

It still has you in its grip. Sure you moved some muscles for a moment. But you return almost immediately to paralysis again.not just paralysis, but intense numbness and cold painful limbs. It remains close always.

There are degrees it seems, not totally paralysed to gross movement, but paralysed for fine movement. Maybe I can move my finger, but not my arm. Maybe I can move for a second, then return to total paralysis.

It is so hard to understand that even when you manage to move, still you are numb, burning, mind blank, unable to function, to hold things, to do things, to feel or function. You are so close to paralysis or so weakened by it, that still, nothing, is possible.

I might get the use of a hand or a finger, yet my left side may remain completely stroke- like, no feeling, no movement, limp beside me. Once, my right arm was completely paralysed,unceasingly, for 6 months. The paralysis may flow in and out, so that one minute there may be more feeling, more  ability,  only to be wrenched away the next; no part of me is ever normal. It never feels like before I was ill. It is always in varying degrees of numbness and total constant pain. Pins and needles weirdly flow in bizarre places, like the side of my head or my knees, as well as my hands and feet.Worse I have hyperesthesia so that the lightest contact hurts me unbearably and irritates. Pressure is intolerable.

You would think it would be researched. You would think it would be medically explained. You would think there would be appropriate support and medical provision, medical interest even. You would think that everyone would know the most severe symptoms of Myalgic Encephalomyelitis. You would think the charities would be raising the roof about this omission, this medical neglect. But no. Unbelievably it is not in the criteria used, despite it was documented by the pioneers of Myalgic Encephalomyelitis, including Dr Richardson.

Instead of medical respect, validation and support, physiological explanations and thorough investigations, we are left to get on with it, with all its torment and unpredictability, incapacity and its massive, inconvenience to every day living.

 Left to feel somehow it is not that bad, not that horrendous to experience, not that devastating or simply just physically unpleasant to repeatedly endure every day, maybe several times a day, kicked into nothingness by the slightest unintentional wrong noise or the abusive ignorance from neighbours, motor bikes or jet engines repeatedly flying overhead, lasting hours on end if not much longer. Given the impression it is somehow my fault or worse that it is not physically real at all, something I am somehow creating myself, breathing wrongly or panicking.

Believe me when I say that  my life is not just a torment, it is a repeated torture in the worst moments. Yet paralysis, my daily nightmare, is untreated and this is simply unacceptable to me, that it is ignored, dismissed and misinterpreted, without proper investigation, left to any opinion or clinicians belief or pet theory. 

It staggers me then, that anybody with genuine ME , would not be demanding and calling for a biomedical pathway, serious medical consultants, proper in depth medical investigation from people genuinely willingly to look and properly interpret results, willing to forge a proper biomedical pathway and give hope to those of us most severely physically affected and medically ignored. 

Why would anyone think a psychosocial pathway was enough or acceptable or appropriate? Why would anyone accept CBT, GET and activity management are actually treatments for this serious neurological disease? How can they not see that compliance, apathy, acceptance and promotion of it, allows psychiatry to waltz in and misinterpret, mistreat, misname and misinform people about my illness?

I cannot understand complicity with untruth and misrepresentation. And I will never accept it myself.
Myalgic Encephalomyelitis is a neurological Disease with multi- system dysfunction. Paralysis is part of it. It is not just a fatigue condition. It is not CFS. Do not confuse the two. It needs a medical, not a psychiatric response.

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