ME: Your Worse Nightmare
I want you to think of the worst illness you have ever had Remember how dreadfully ill you felt How everything you normally did suddenly became totally unmanageable Perhaps your head hurt so bad that you had to lay in bed all day to cope Perhaps you felt or were utterly sick and food made you feel even worse Perhaps you were dizzy ,off balance and disorientated so that you had to sit or lie down or fall over Perhaps you had an operation and felt weak, groggy and sore. You must have felt out of synch with the world and unable to participate in it like you normally would Now I want you to add pain Pain that spreads all over your body Not just one sort of pain but pain that throbs , pain that burns, pain that itches and screams at you pain that crawls up your skin and invades every millimetre of your body: Your nose, your eyebrows, your eyeballs,your ears, your scalp, your neck, your front, your back,your toes, even the soles of your feet Everything expanding and contracting in agony Now look inwards and you find your stomach hurts, your intestines throb, your diaphragm aches, your muscles burn with exquisite pain like you have never known before Now imagine that this unbearable, intollerable, never ending pain that you simply dont know how to tolerate Gets worse everytime you sit or lie down and intensifies even more so that when, if ever , you actually manage to get to sleep you waken up in even more tormenting pain than you were in before And this is only the beginning of your nightmare. Now I want you to imagine the world has suddenly got incredibly loud and everything is irritating to your ears. Noise sends piercing pain into your head and the vibrations echo round your whole body exacerbating every inch of pain to a crescendo A whisper sounds like a shout Banging in the street turns your head into a drum Music which you previously loved suddenly becomes a torrent of cascading irritation Voices on the radio suddenly become an assault of indefinable words and sounds The picture moving on the tv screen becomes a piercing blur that tears at your eyes and pierces your mind You cannot follow the plot You cannot understand what is going on. Incoming information jams in your head You are left in a bewildering fuddle Your thoughts disappear and your mind becomes an empty blank The phone rings and you put your head in a cushion to stop the noise And now you begin to realize that you are being tortured by normality Think what it is like to discover that people make you feel very ill. Their very presence, their noise, their movements,their conversation, their perfume, even their touch, makes you feel worse and worse and worse so that you cannot bear to see people, you cannot talk to them, you cannot answer their questions You cannot even speak on the phone to them or hold a pen to write a letter. Think what it is like to then discover that on top of all this you are light sensitive. Even dim light hurts your eyes. Suddenly you have to live in darkened room, wear sun glasses in winter Cover your head with a cloth to avoid over stimulation and to your dismay you find that your muscles have mysteriously ceased to function Your hands wont hold anything Your legs wont work Sometimes your eyes wont open and you cannot speak You cannot eat without help You have not got the energy to chew your food Swallowing has become difficult and dangerous as food gets stuck You have become strangely sensitive to most foods and only a strict diet is possible and very very dull.. Working has become totally impossible You cannot do the basic things you need to do to get through the day You cannot get to the toilet unaided You cannot cook your food You cannot wash and iron your clothes or clean the house or use the hoover or mow your lawn or answer the door or post a letter. All the things you take for granted simply disappear from reach. You cannot even walk. And your worse nightmare has come true too Every time you sleep - and you find this is sometimes two or three times a day- you wake up completely and absolutely totally Paralyzed. Conscious Yet unable to speak or call for help You have to lie and wait in a numb body that cannot move, Tormented by intense pain and extreme pins and needles you wait till finally help comes But even then you cannot bear to be touched or moved. You are helpless to the power of this paralysis till it releases you slowly from its clutches. Imagine all this happening to you not once or twice or even for a few days, but continuously day after day night after night week after week. month after month year after year decade after decade Imagine this surreal life suddenly becoming your whole life without relent Then discover that this is not like any other illness where you are treated with respect provided with a knowledgeable consultant Given proper biomedical tests and offered treatments based on the results. And your GP actually believes you are physically ill Not so in this illness. Nothing is given. Nothing is as it should be. Everything is different. Now you find that you are on your own. Most people and especially professional people, but also your friends and family who should love and care for you Simply don't believe you. Cannot understand you. Give up trying Blame you for being ill Get angry and persecute or reject you Simply fade away. This is now your ongoing reality. Severe illness. Complete Isolation. Neglect. Poverty. Torment. Denial. No biomedical treatment. No proper testing. Difficulty getting aids and equipment to help. Difficulty accessing services and benefits you are entitled to. Difficulty communicating your needs. Living on the edge of society. Abandoned by people. No hope and little understanding. The future is dim.. Think how this feels. Remember what I have said. Then do something about it, Change my reality. Speak up for ME. Reach out to those in need. Understand their illness. Understand the true horror of their experience. Stand in solidarity with them. Make things change for the better. and make it happen today. Speak up for ME. Invest in ME. Remember ME. Linda Crowhurst 11th May 2010
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