Awareness Week

M.E. Awareness Week: "No, I'm not 'just tired'"

"Imagine this scenario: you're woken in the night by chest pain. When you get up the next morning to do the kids' breakfast your legs are like lead, your vision is blurred and when your seven-year-old asks for Coco Pops your brain reacts as though they've asked you for the cubic volume of the moon.

Suddenly you can't stand up any more and everything around you disconnects. You are alone with the kids and you can't get yourself to a doctor. Would you call a cab or an ambulance to take you to A&E?

I wouldn't call either, because I know there's no point. I have the illness known as M.E. or Chronic Fatigue Syndrome. This scenario is a regular occurrence for me when I have a flare up. Yet even when I've been taken to A&E, unable to move or speak, doctors draw a blank as to what's going on inside my body. I get sent home with a paracetamol and a pat on the head, if I'm lucky.

M.E. is so poorly understood that doctors can't even agree on its name. It stands for Myalgic Encephalomyelitis, but the medical establishment prefers the term Chronic Fatigue Syndrome. There is no test for it, let alone a cure, and it affects about 250,000 people in the UK.

The reason we sufferers hate the term Chronic Fatigue Syndrome (or CFS) is because the name is like a whitewash. People are disabled by M.E. to the point of losing the ability to walk, drive or read a newspaper - even to the point of needing tube feeding. But the label CFS implies we are just "tired".

As my lovely friend M confessed to me the other day, after five years of our daughters being best friends: "It's hard to understand you guys with M.E. because when you say you're tired, it's like, 'well we get tired too'."

I'm one of the lucky ones. My disability may be invisible, but the really invisible people with M.E. are those you never even see or hear about, because they are confined to a bed in a darkened room.

Welcome to planet parent. How many other mums I know are thinking the same thing?

So what's it really like to live with M.E.? Well, think of your mobile phone, which probably runs out of charge by the end of the day. People with M.E. are like mobile phones with knackered batteries that only charge up to about 10, 20 or 30 percent. After the equivalent of sending a couple of texts and checking the weather app our battery dies and we crash. That could be simply having a shower and getting dressed.

Friends see me walking my girls to school and smiling at the school gates, but what they can't see is that the school run uses up about 60% of my energy charge for the whole day. Do the maths, and that doesn't leave much for doing the dinner, the homework, the bedtime, the washing and the pre-teen dramas that command my daughters' full attention.

I hate having to explain that I have a disability that prevents me taking my girls to Brownies after school, joining the camping weekend, pitching in with the school fair or helping friends out when they're stuck for childcare - because for that snapshot in the day they see me looking entirely "normal".

And I'm one of the lucky ones. My disability may be invisible, but the really invisible people with M.E. are those you never even see or hear about, because they are confined to a bed in a darkened room for years and sometimes decades at a time.

Every time I feel sorry for myself because I'm a disabled single parent I think of Jenny, and others like her. At 29, beautiful, talented Jenny longs for her first kiss and the chance to be outdoors with her friends, because a very severe form of M.E. has cruelly stolen her youth from her. M.E. doesn't usually kill, but it can take your life away.

When I was 23 my M.E. was as bad as Jenny's. My 'battery' wouldn't charge at all, leaving me virtually paralysed and intolerant to all sensory stimulation. I couldn't sit up, feed myself, hold a conversation or even listen to the radio. My mum and dad had to care for me as you would a newborn baby. I inexplicably recovered. Today I am 'only' moderately ill, whereas Jenny has remained in this state (which you can barely call living) for the past 12 years.

Every time I get down about all the things I can't do with my girls – take them to the park, sometimes even read them a bedtime story – I remember there are others who would give their right arm to have even the halfway recovery that I've had. And the miraculous fact that I've had children at all chokes me up inside.

So next time someone tells you they have M.E., take it as a compliment that they've even shared this information with you. Assume nothing from their appearance about their day to day life. Don't tell them about how you get tired too. Above all, remember: for every person you encounter with M.E., there's another one who has disappeared from view.

By Catherine Hale

12 Replies

  • So moving...and thought-provoking, thanks Slowmotion :)

    I find the battery analogy really helpful when explaining briefly to others about this condition.

    And as a non-parent, I feel-for and admire parents with ME, wondering (and curious), how they cope...

  • Sharing admiration of young parents with children impact far beyond ourselves responsibility terrifies a shredded memory.

    Respect with longing for greater support of families am I asking too much my thoughts provoked.

  • Thanks so much for sharing that.

    It is so good that word about this illness is getting out and people are being told exactly what we have to cope with. I was healthy when I had young children. It must be a terrible struggle, especially for a young single parent and all the expectations and absolute necessities they have to deal with.

    I do hope that awareness week reaches more than those of us who already know what we are dealing with. And I hope it gets through to people. We have an awful lot of propaganda and current social stigma to counteract.

    I am lucky that I had my children and enjoyed university education some few years in a career that I absolutely loved before I became ill. I look back on that and remember my joy, and it sustains me now.

    We never know how long we have to live on this planet or when or if we will be disabled in some way. It has helped me to remember that, and try to turn my expectation thoughts around to something more like this:

    Nobody can control where or how they are born, what kind of family, what country, what skin colour or economic class, what degree of ability or disability they will innately have.

    Likewise we cannot control the external things that will happen to us along the way, except by careful avoidance of known hazards and a relatively healthy life.

    The past is past. We are where we are. I am who and what I am. My body is as it is. There is no good that is going to come of me feeling miserable that I am not what I used to be or what I expected to be at my age.

    I try to put myself through this logical exercise when I feel upset about my limitations and losses. Then I think about all the things I have enjoyed, all that this life has given me and that I still have to enjoy.

    I try to imagine that I will continue to enjoy these things for awhile longer, but realise that I don't know how much or for how long. Then I remember that when it's all reduced to what I know for sure, What I have is THIS MOMENT. I don't want to waste it!

    So I try to find something that will make life better or enjoyable in this moment and if possible, in the near future. That works pretty well for me.

  • My batteries are not as expected though I am grateful for what I have experienced before my life changed, for the young that have not had that chance the strongest emotions are stirred.

    Not a good life or a bad life just my life for making the most of in the time given.

  • Powerful piece. I too like the reference to batteries that refuse to recharge to full capacity. In fact it has helped me take one small step toward the serene state of.


    Well it will if I can retain it for more than a millisecond.

    Hoping that you have the best of possible days.

    And keep warm its cold here abouts. One more thing to drain the batteries..

  • Feeling so moved by each sharing...and all the fine nuances...heartfelt thanks to you, each in turn, (hoping I include all as intended), Slowmotion, Seascape, Ian, Budgiefriend, Nedd...Thanks for being here, with every appreciation.

  • Thank you all I am less alone in the dark searching for understanding with such generous support + sharing ways of coping.

    ((((Hugs my friends))))

  • Thank you so and

    ((((hugs)))) for you

  • This small group is by far the most helpful, intelligent and kind I have been a part of. I echo RockRose and slowmotion's expressions of gratefulness. Can't say it any better than you did. Big hugs to all of you

  • Tells of a loss bigger than the struck down powerful stuff.

  • Beyond a daily struggle a clear description outsiders can absorb thanks.

  • I feel sad in my heart a mother cannot take a daughter to Brownies I feel the same pain with my grandchildren no tablets take this away.

    Awareness week coffee morning in our church hall raised money spread awareness a good day for everyone.

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