To care for someone with severe ME is to witness another’s  daily pain, torture and agony.  You cannot  contain or stop the torment of the one you love.

You  can only look, you can only dare to watch , with your heart  hurting, your grief overwhelming, your anger burning.

In these extracts from  a log  we have kept this year, my wife, Linda, describes the ongoing assault of multiple symptoms upon her body :

Jan 1^st 2009

I lie and sit in utter inability, every thought of action, every hope of activity impossible, my body pounding with pain, my energy completely dissolved into nothingness.

Jan 2^nd 2009

My head is compressed by the illness. All thought is an effort against the crushing pressure of nothingness that oppresses my mind where thought and aliveness, light and brilliance should be.

My body thumps its painful rhythm in time with my heartbeat, truly I struggle in these moments.

Jan 3^rd 2009

Paralysis has left me dull, exhausted, incapable.

Jan 4^th 2009

..a never-ending, ever-persecuting physical reality that few could bear for a moment, a minute , an hour or a day. Yet I have endured and continue to endure for fifteen years. Endless throbbing, interminable paralysis, utter and complete exhaustion, noise sensitivity, light sensitivity, chemical sensitivity, touch sensitivity, the list of symptoms goes on and on. Anger mounts, frustration, irritation, irritability, so inevitable and yet I am so powerless to stop it – it is linked to the physiology of my illness.

Jan 6^th 2009

My body still hurts, my ability is zero.

Jan 7^th 2009

I am a sea of empty nothingness today. There are so many, many moments every day where my body is lost in the sensation of this floating nothingness that invades the whole of my body. I have no thought, I have no movement, I have no normal sensation of feeling, as  if my body has become transparent to my senses.

Jan 8^th 2009

My symptoms are deteriorating. My head pain begins to throb louder and louder. My face burns. My hands and my arms become heavier and duller and the pain intensifies as my energy dissipates. I feel as if I am travelling down a tunnel of torment, entering into worse and worse states with each passing moment.

Jan 11^th 2009

This illness is so vast and all – encompassing.

Jan 13^th 2009

I awake utterly physically paralysed, unable to move my lips, my fingers, my toes. I cannot call out or shift position.

Jan 16^th 2009

How can I bear this throbbing that invades the whole of my being ?

There is no place in my body that is not throbbing and hurting and irritating me. I am tormented by hopes dashed for the day; hopes  of small achievements. 

What do I do to cope ? I cannot stop the throb, nor the pain, nor the irritated muscles and skin, the sense of motion without movement, the feeling of expanding and contracting along with the rhythm of the throbbing.

Jan 17^th 2009

Going to bed is not for me the pleasure, the comfort and the rest that it should be. Instead as my body enters deeper into relaxation so the pain, intensifies, burns, deepens, magnifies. At the same time my muscles sink into utter paralysis and abandonment of all possible movement and certain parts of me become totally numb and feel completely dead to any sensation.

This then is my recurrent nightmare of experience, every time I return to bed. Despite this I still yearn for and perhaps naively hope for the sweetness of sleep. Yet time and again it is only a recurring torment.

 

Jan 21^st  2009

Today I am struggling, my symptoms have worsened, my breathing is difficult, my throat is irritated, my body screams with vibrating pan and I am left completely unable, all over again.

I am tormented by noise, irritated by demands, over-loaded by expectations, weighed down by thinking the simplest thoughts. I want to scream.

I fall into tears. The ongoing agony of this illness is relentless.

And Hope ? Where is hope ? Where am I in this nothingness of illness ? 

Jan 24^th 2009

I cannot live in the ordinary world and nothing I do is experienced within a context of normality, that people would generally experience life within.

Everything is filtered through layer upon layer of irritation, irritability, nerve pain, muscle pain, brain-fog, disorientation and confusion often.

Even on the very rare occasion that I go out no part of me fits into the normality of the world. The environment is hostile to me, people, even those who mean well, drain my energy, speak too loudly, overload my brain and tend not to be aware of my acute need for sensitivity, gentleness and quietness of soul.

Jan 26^th 2009

Jan 27^th 2009

I live my life in a very still way. I do not see anybody. I cannot see anybody. I do not have the energy or ability to tolerate seeing anybody.

Jan 28^th 2009

My mind seems to have two positions that it exists in. One is that my mind is shut down, blank, fogged, empty almost. The other is that it is full on, busy, over-loaded, impossible to switch off and overwhelmed and over-stimulated by the information it has to deal with. Both positions are difficult to manage, uncomfortable to be in, not conducive to normal interaction.

Jan 30^th 2009

Most of my life is spent waiting. I have in fact to wait for everything. When I awake from sleep I am in a totality of pain and paralysis. My inability to move increases the level of pain I experience, yet my will is unable to make my eyelids open even. I live in this place of extreme being, waiting, waiting for my body to be able to reengage  with motion. I cannot fight it. I cannot change it.

I wait for what seems like an endless amount of time. Moments, seconds, minutes, hours to feel my body. To finally move my eye lids, to move my little finger and then another.

Physical contact is a double –edged sword. The level of pain and hypersensitivity I experience makes it excruciating, unbearable, intolerable. Yet without it, I remain locked in my paralysed body unable to speak, to call out, to sit up, to move my legs away from the hot water bottle or reach the drink beside me.

I wait to bear to move, the pressure on my chest is intolerable. My heart pounds and I am afraid that I may never move or if I do my heart will not tolerate the effort required.

I wait suspended in a surreal place. I cannot afford to feel angry or lost or despairing. The only place of safety is to find a moment in the waiting, a moment of acceptance, a moment of peace, a connection with more than myself.

Feb 1^st 2009

Another morning. I lie here in the vastness of agony. There are no words to describe its onslaught. It is intense, all encompassing, everywhere. I am in it and I am it.

My whole body lies motionless.  My arms above my head, impaled upon the pillow, I cannot move them. Mysterious as to how they got there, I struggle with my breathing. How long have I lain deep in this posture ? My left leg is outstretched,  numbness pervades it. My right leg is bent out at an angle. I cannot feel my toes. My feet and hands pound,  in the very centre, a throbbing beat of pain.

How long will this go on ? Hours probably, yet always these experiences lie within me, the pain ever present whether I am paralysed in bed or sitting on a chair. The experience is ever present within me, no matter what my external posture.

My face burns, prickles, throbs too in rhythmic unison. My face is palsied. I cannot even cry out, yet the hurt rages in me and I long to escape from this tormented place.

My head pounds inwardly and burns outwardly.

Please do not touch me. The contact will send me over the edge and still I would not be able to move.

My eyeballs throb, my lids are shut, unable to open to the dim lit room which still would pierce my eyes with pain, were they open.

My head pounds too. The pain is even worse in my arms. My arms and chest have melted into one large immense ball of throbbing agony, immobilised my body feels dead in so many ways, only alive to the pain that holds it together.

This is no odd occurrence. I return to this place again and again; always impossibly difficult to describe.

Feb 2^nd 2009

Indescribable horrors assault me today, the throbbing grows louder and wilder, irritating, crawling, unimaginable sensations flow round my skin and I am left crying with the onslaught.

I do not know how to cope with this moment and so many others.

There is no let up to this wheel of pain I am irrefutably crushed by.

Crying brings release. I sob and that sob goes out like a cry for justice.

For when you know there are no medical consultants available to help you, test you, treat you, support you, help you understand the increasing levels of disability, when you are dismissed by neurologists, the very people who should be searching for answers, when you know there are lobbyists and other people all working to deny the severe reality of your illness, when you have to fight for every service you should so easily be entitled to, when you have to keep explaining to people how ill you are, because they simply do not understand, when people fall away too busy, too lacking in vision to maintain contact; you know with all certainty that you live on the edge and there is a great injustice being perpetrated.

And so I cry out and that cry is a shout of desperate need, of huge hurt and frustration, of huge anger and betrayal and deep distress.

..and what has NICE got to offer :

The  highly inappropriate NICE Guidelines, which  are being implemented, as we speak, right across the land offer absolutely no practical  biomedical intervention or test or treatment  that will help Linda. Our  living nightmare, will only get worse if the NICE Guidelines are not re-written from a biomedical perspective.

Greg Crowhurst Feb 4^th 2009