ME Awareness Week 2019 – A Parents View

ME Awareness Week 2019 (2)

Carrying on my week of posts for ME Awareness Week 2019.  Today I am writing a parents view, where I share the reality of how a parent of a child with a chronic illness copes.

Before ME Struck

C has always been a bubbly, happy and chatty little girl.  She was always doing something whether it was her dance class, scouts, playing, art, she was always busy.  Loved school and got on with everyone, and loved taking part in after school clubs.

She started her new school, and was loving the freedom of going to school and back on the bus, socialising with friends and shopping with her friends. She was a normal happy-go-lucky child.

Looking back on old photos you can see what a bubbly and happy child she was.

Watching The Suffering

As a parent you are supposed to take away any pain or suffering.  When C was little a cuddle and calpol would be all she needed.  But this is something we can not make better.

I have had to watch my child cry her heart out as she is in constant pain 24/7.  Watch her heart-break as her friends have drifted off one by one, as they get on with their lives.  I do not blame them they are young but it still hurts. Then there is the comments she is just being lazy, she just does not want to go to school any loads more.  I wish she was just being lazy.

We have to watch as she struggles to the bathroom, where sometimes she collapses as her legs do not work.  Seeing her crash after a hospital appointment and the extra pain she is in.

Then there is her education, she has not had any for months now as she is too ill.  She has tutors all set but she is just too ill.  She should be sitting her GCSE next year but this is not going to happen, she should be going to her prom next year but this is not going to happen.

The protectiveness

We are hugely protective of C, when out with her and she is in her wheelchair, I see the looks others give her.  If someone makes a comment about her we put them straight.  People have said I do not know how you cope, I could not cope with that.  What are we supposed to do, of course you cope you have to as there is no one else who will.

The heartbreak

It breaks my heart daily watching her suffer, her eyes have always been her tell-tale sign she is not well.  Every morning I go in to see her once she has woken up.  I always go in with a huge smile on my face asking how she is just in the hope one day she will feel a little better.  I try to stay positive and happy, but reality it breaks my heart and I do have my moments where I shut myself away and cry my eyes out. We have no idea what the future holds, but we will make sure we will fight every step of the way to give her the best we can.


A Parents View

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Comments (36)

  • Anagha 2 weeks ago Reply

    That line where you said every morning you go into her room with the smile on your face, great mother you are ! I feel with your help and love, she will show signs of improvement. I hope things get better for your family <3

    admin 2 weeks ago Reply

    Thank you, some days I have to paint that smile on and others I do because even through all of this seeing her brightens up my day x

    Yocana 2 weeks ago Reply

    So sorry that you have to go through this with your child. You are such a great mum. Praying for both of you.

    admin 2 weeks ago

    Thank you x

  • Laura Dove 2 weeks ago Reply

    Im sorry to hear you have to go through this, especially with a child. I’ve lived with ME for 20 years now, alongside 4 other chronic conditions, and it’s exhausting – mentally and physically.

    admin 2 weeks ago Reply

    my Aunt has had Fibroymalgia for over 20 years, only found out last year. C has Fibro and severe ME plus suspected POTs but they do not want to give her another label

  • Patrick 2 weeks ago Reply

    Really sorry you are going through this…is there any treatments or clinical trials you qualify for? What does the future hold for you and your child?

    admin 2 weeks ago Reply

    There is nothing and as for the future there is hope. We are looking at Lymes Testing and co-infections through a clinic in Germany which is costing a fortune but worth every penny if it helps x

    Khushboo 2 weeks ago

    Oh I am really sorry and feel bad about it. I will pray she will be fine soon.

    admin 2 weeks ago

    Thank you x

  • Kacie 2 weeks ago Reply

    It’s been such an eye-opener to hear more about your journey with ME. It can’t be easy to see one of your kids having to deal with that.

    admin 2 weeks ago Reply

    Thank you and no it is the hardest thing we have ever had to face x

  • Mellissa Williams 2 weeks ago Reply

    I can’t begin to imagine how difficult this journey has been for you as a parent, seeing your child suffer. My heart goes out to you, I really admire you.

    admin 2 weeks ago Reply

    Thank you, it is heartbreaking as a parent as you are meant to make things better and with this we just cant

  • Jasmine Martin 2 weeks ago Reply

    I am sorry that your daughter is going through so much pain. I can’t imagine how hard it is for her and for you to go through this. You both are strong and I will send positive thoughts as well as prayers to you both. I know it can be hard, but keep staying positive and hopeful.

    admin 2 weeks ago Reply

    Thank you, as a parent we are supposed to be able to make thngs better, this has been the hardest part so far not being able to take the pain and illness away.

  • Katherine Gamble 2 weeks ago Reply

    I don’t think I heard of M.E. before reading this post. So I want to thank you for writing this post and bringing awareness of this illness. I’m so sorry to hear that this is something affecting your family. I want to say you’re courageous for sharing your personal struggles and I know you guys will get past this.

    admin 2 weeks ago Reply

    Thank you, I find the best way to share what ME is and how it affects the sufferer and family is to write from the heart and share our lives as it is easier to understand x

  • Playdays and Runways 2 weeks ago Reply

    I can’t imagine how hard this must be for you. It’s not fair that you have to watch your child suffer

    admin 2 weeks ago Reply

    Honestly it is the hardest thing we have faced x

  • melissa major 2 weeks ago Reply

    Sorry to hear about this, it sure isn’t easy I am sure. Very good of you to raise awareness.

    admin 2 weeks ago Reply

    Thank you x

  • michelle twin mum 2 weeks ago Reply

    Oh my word, bless you for sharing so openely. It sounds silly but I hadn’t realised that ME affects children as well as adults. It must be so hard to watch your child suffer like this. Mich x

    admin 2 weeks ago Reply

    There are thousands of children suffering some much younger than C x

  • Akamatra 2 weeks ago Reply

    I am so sorry about what you are going through. No child should be in constant pain, it’s so unfair! Hope for the best!

    admin 2 weeks ago Reply

    Thank you it is hard with the constact pain but it is also the other affects as well x

  • Anosa 2 weeks ago Reply

    It is always heartbreaking when as a parent you can’t take away your child’s pain even if you want to. Keep staying positive, you’re doing great.

    admin 2 weeks ago Reply

    Thank you that is the hardest thing we have had to deal with x

  • Kirsty 2 weeks ago Reply

    It must be an in incredibly hard and difficult journey not only for C but for you as well. Living with a condition that people do not understand is something I know all to well but you are sharing and educating those with raising awareness which is perfect and I hope it makes a little change to how people perceive you x

    admin 2 weeks ago Reply

    Thank you, I can only share awareness and tell it from our side and the reality of it all

  • Claire 2 weeks ago Reply

    Really sorry to hear you and your family are going through this. Great to share awareness of this though and the impact it has on your child

    admin 2 weeks ago Reply

    Thank you raising awareness is something I can do and highlighting how badly ME sufferers are treated x

  • David Elliott 2 weeks ago Reply

    That would be so tough I think. It’s so sad to see our children suffer. I think knowing there was nothing you could do would be all the worse. I am so sorry you are going through this. It’s sad how many people suffer from it.

    admin 2 weeks ago Reply

    That is the hardest thing not being able to do anything to make it better x

  • So sorry to hear what you are all going through. It’s never easy when it involves our children. Well done for raising awareness. Sending love and strength. x

    Thanks so much for sharing with #MMBC. Hope to see you tomorrow.

    admin 2 weeks ago Reply

    Thank you x

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