ME Awareness Week 2019 – A Parents View

ME Awareness Week 2019 - A Parents View

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

ME Awareness Week 2019 – A Parents View

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.

 

ME Awareness Week 2019 - A Parents View

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38 comments

  1. 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

    1. 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

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

  2. 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.

    1. 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

  3. 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?

    1. 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

  4. 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.

  5. 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.

    1. 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.

  6. 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.

    1. 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

  7. 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

  8. 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.

  9. 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

  10. 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

  11. 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.

  12. My heart goes out to you and your child..As a parent, it must be hard seeing your child suffer everyday..If only we can take away their pain then we already did..Thank you for raising awareness..

    1. Thank you, it is hard and one of the hardest things as I have ever been through as a parent, as no matter what I try I can not make it better x

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