This article by Pat Mathewson first appeared four years ago in the ME Association's quarterly magazine ME Essential.
This is the third in a number of ME Perspectives which we shall publish on this website from time to time. To read the others, type MEPerspectives (no gap between words) into the search box.
This is what it's like to have M.E.
Being too weak to wash or dress yourself.
Too weak to clean your own teeth.
Too weak to wash and dry your own hair so that your teenage son has to do it.
Too weak to do the cooking you love.
Too weak to chop a carrot.
Too weak to cut up your own food on your plate.
It means listening to the laughter and chatter of your family in a distant room as they try to enjoy Christmas without you… as you lie in a darkened room wishing you could fall asleep and not wake up.
You can't be with them because you can't sit up; because every light is too bright; every sound is too loud; every smell is too strong.
It means being afraid to move knowing that you will have to get up for a pee and that when you do you have to start the resting process all over again.
It means being constipated for days because you haven’t got the strength to push and you get exhausted with the effort.
Having M.E. means being lonely and isolated. It means you can't read a book or watch T.V. or listen to the radio.
It means that your friends can’t visit or phone you.
It means you can't write letters to them.
It means feeling cut off.
It means being in bed for so long you forget what the kitchen is like and all your pot plants are dead.
It means, as you recover from a relapse, that your first trip out in a car is frightening as the speed feels too fast, even at 20 m.p.h. It means that summer has gone since you were last outside and the leaves are falling from the trees.
It means living through the embarrassment of using a wheelchair to have any life at all.
It means hearing a friend say, "Oh for Christ sake get up and walk" or to your husband, "Give her a good kick up the ass. That'll get her going. And you wonder whatever can she be thinking….
It means feeling hopeless as you hear pundits say it's all in the mind and yet again a newspaper has called it yuppie flu. It's no yuppie and M.E. is NOTHING like flu.
It means feeling angry with overpaid, silly journalists like Julie Burchill who calls it "malingerers'ennui" because she thinks it's clever and you wish that she could get it for just one day.
It means you can no longer help your family and friends as much as you would wish.
It means that you look as if you're just lazy as you no longer jump up to help with the washing up.
It means watching everyone dancing at your daughter's wedding while your heart, body and soul aches to join in but you have to hide the pain.
It means endless longing to swim in the clear blue sea.
It means having so much wanting, longing and yearning inside of you that you feel it must be visible to those around you. But no. They don't see it. They see you trying to be normal, putting a brave face on – because who wants to be with an old misery guts?
It means refusing alcohol when your old friends say,"Go on. One won't hurt you. And then you realise you have turned into one of those precious people you disliked who say no to alcohol and caffeine. So you carry around decaffeinated tea bags and apologise for being a fuss pot.
It means watching your friends develop and grow while you stand still. You hear about their jobs; their latest exercise."You should try it – a bit of gentle exercise is what you need."
It means hearing about their cycling holidays, their lovely walks in far off places.
It means feeling miserably cold because you can't move about to warm up.
It means being overweight because you can't exercise.
It means feeling that everyone thinks you've turned into a raving hypochondriac.
It means that whatever your reason for going to hospital, if you mention M.E. you will encounter off-hand, impatient nurses having a go at you because they think you are a whinger and you lie there in despair because you don't have the strength to stand up for yourself.
It means that your little grandson grabs your hand and says,"Come on Granny" and doesn't know that you can't run after him.
It means that your poor demented mother doesn't remember any more that you
It means your Grandson asking "Where's Granny's wheelchair?" when he sees an old photo of you before the M.E.
It means having friends who still see who you are, acknowledge the M.E. but treat you the same. It means that you value them so much you're afraid of losing them.
It means being afraid of losing your husband and children for fear of them getting fed up with you.
It means being too weak to turn over in bed; too weak to pull the duvet over your shoulder.
It means no more bare foot walks on a sandy shore.
It means no cliff top walks for the view.
It means that you can no longer enjoy the feel of the soil on your hands in
It means climbing the stairs on your hands and knees… until you can do it no more and the day comes when you have to leave the house and home that you and your family love.
It means not being able to run up and hug someone you love.
It means not being able to respond to an emergency.
It means clinging on, as hard as you can, to all the skills that make up the person that you are, only to find that one by one you have to give them up and wonder who you are and what you stand for.
It means anger, rage, disappointment, tears and more tears.
It means anger, rage, disappointment, tears and more tears.
It means clinging on to a fragile thread of hope that one day, some day, someone will find a reason for the M.E. and a cure.
But most of all, the wishing and hoping comes down to needing understanding, knowing full well that it's a lost hope and people will STILL say "Oh we all feel tired".
No they don't, not M.E. tired. They might feel healthily tired after a good day\s work, but M.E. tired is like walking through treacle with a bag of coal on your back and a lead weight on your head. M.E. tired is like starting a marathon as if you've just run ten.
M.E. tired is like no other tiredness.You can't exercise your way out of it. You can only rest until you are bored out of your skull and then some…
You try every crackpot remedy just because other people want to see you make an effort."Come on. At least try it. You've got nothing to lose." Only hope, money, dignity, time, energy. And then you are faced with the failure yet again and someone is sure to say that you haven't tried it long enough or – the great catch-all phrase of our age: "It didn't work because you're blocking." Blocking? Why would you block recovery when every fibre of your being aches to be the fit and well person you used to The one who grew food and flowers, baked her own cakes and bread, delighted in cookbooks and new recipes, knitted for England, made her own and her children's clothes, walked everywhere – no school run for me; the one who thought she could change the world, joined CND, campaigned for Nicaragua, wrote letters for Amnesty and Survival, and even now protests against the Iraq war, wants social justice and fair trade in the world.
I was 34 when M.E. changed my life and made me a prisoner in my own body.&n This year I will be 60. It's a long time to wake up every morning and feel the pain that will be with me all day and every day; it's a long time to feel such utter frustration that I feel that I'm going to explode with it and the letters of that word will float in the air for all to see.
25 years is a long time to feel unwell and to look back and wonder what your life would have been like without it.