ME Awareness Month – Week 3


As you will all be aware by now, May is ME Awareness month. For my Daughter and the 1000’s of other sufferers. I am raising awareness of this horrible illness. And hopefully trying to show just how ME takes hold and causes a sufferer to feel.

If I had a £1 for every time, I have heard could C be depressed. Or I think she is depressed, I would be very rich.  Yes it is obvious that they do get down, but depression is not the reason.

A person with ME, has to prepare for any form of activity. And rest up so they have enough energy to get through a trip out.  There is always pay back the next day or two.  When someone with ME is out, it is often hard for others to realise just how much effort they are making and how much they will suffer after.

This is one thing that is very hard to hear. I know everyone is trying to be positive and helpful, but hearing someone at work has this or had this. They were fine after a few weeks or, they can still lead a normal life, or she will grow out of it.  I just smile now, as there is such a huge spectrum of just how someone suffers. Some are bedbound, others are able to do most things and have little payback. There is no cure, there is no they will get better, they will grow out of it.  It is just down to how their bodies can cope and just how bad payback comes.

We all pray for the good days, they are very few here with C. But if she says she would like to do something today. I will always say yes, even if it is a visit to the garden centre for a coffee.  We know she will suffer but we both miss our little outings we used to have.

I have in the past heard C and her friend chat or one of her brothers, who say it is not fair and I wish I could just stay in bed, or I must have ME as I am tired.  I know they mean no malice and I know they are joking.  But it is not a joke, and for someone who suffers with ME, it is upsetting as they would give anything to feel ‘normal’ again.

This is one of the things I find the hardest to cope with, the isolation, my heart breaks daily due to this.

If you could ever eaves drop into my house and conversations, when one of my boys was living here, you would often hear me say the same thing over and over.  He would be joking but jokes wear thin.  Just try to remember if you know someone who suffers with ME, just remember they do not choose this life, they would happily swap anytime to have a normal life back.

This weeks post, is more about how a sufferer feels and copes with the illness, and how flippant remarks can cause pain and upset.  The occasional comment is fine but not all the time.

Please feel free to comment, share and/or message me.

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Comments (8)

  • Gareth Torrance 2 years ago Reply

    One of my closest friends suffers from ME, so any awareness it can get is great!

    admin 2 years ago Reply

    Thank you and sorry your friend is suffering x

  • Ana De- Jesus 2 years ago Reply

    It must be horrible when people make missguided comments where they ‘wish to have ME’ so they can stay in bed. Like you said no child or person chooses to spend the entirety of their lives in isolation. I just wish that bad things didn’t happen to good people x

    admin 2 years ago Reply

    It is and it does get very tiring, I know they are joking but sometimes it wears thin, one of my boys was forever saying this and I would pull him up on it, and he would say he was only joking, and I knew he was but sometimes it just gets to you a bit too much x

  • Nayna Kanabar 2 years ago Reply

    I think people don’t understand that people who suffer from any form of ilness are often more sensitive than others and that tact should be applied when joking or passing comments.

    admin 2 years ago Reply

    I can take a joke and if it is the first time someone has said it, I take it as a light hearted comment, but it is when the same people say it over and over is when it gets to me x

  • Tanya Brannan 2 years ago Reply

    This post was amazing. Why?? Because even though I have been reading about you and your daughter, I still had very little idea of quite what ME means, This explained everything in an easy to understand way and I feel I understand your struggle so much more.
    I still hope and pray that your daughter will improve and start to have a life that a teenager deserves xxx

    admin 2 years ago Reply

    Thank you, I am sure people are getting fed up of me by now, but then I get reponses like this and it means I am doing something right in getting the awareness out there x

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