ME Awareness Week 2019 – A Letter To C

ME Awareness - Day 6 A letter to C

Day 6 of ME Awareness week  today I am writing ME Awareness Week 2019 – A Letter To C.  I have not done this for a while and although  say it to her all the time.  It is nice to read it as well.

ME Awareness Week 2019 – A Letter To C

Dear C

You have been ill since you were 11 years old.  At first we just thought you were getting used to Secondary school. It was new to you and a lot harder than Primary School.

Nothing prepared us for when you had your first crash and the start of our new journey of living with a Chronic illness.  We have had a lot of tears and also a lot of laughter.

The early days

At the start when you collapsed as your legs would not work, or you were unsteady on  your legs.  We would call them your Bambi days.  Sometimes I would find you in a heap on your bedroom floor as your legs had given way.  Luckily Dad was home a lot of the times this happened, and he would pick you up and pop you back on your bed.  Unfortunately, he was not always home and it was left to me.  We ended up laughing so much as I tried to get you back into your bed.  Probably not the most conventional way but we managed it.  

The heartbreak

I have lost count of the times I have held you while you broke your heart and cried, telling me everything that was worrying or upsetting you.  How much you wanted to be normal and wanted to go to school.  Where I would fight back my own tears as my heart broke alongside yours without showing you.  

Your talent

Since you were little you have always had such a love of art, and one thing that you have not lost is your love of drawing.  It is something you can pick up and put down.  I know I tell you all the time but your pictures are amazing.  I am so very proud of you and you have such a talent.

You have an online friend who you have been talking too before you became ill.  She is the one person who has always been there for you, every day she is there for you.  You have never met but she is going to be close to us in the summer.  Your face when you told me and asked if you could meet her was full of joy.  How could we say no. 

I promise you that even if you sleep all the way there and back and only manage a short time, you will get to meet her.  You deserve something to look forward to.

Two years ago you found out that you were going to become an Aunt.  Your face said it all, you were not impressed.  Since becoming an Aunt, your world has changed.  You adore the role and the bond you have with L is amazing.  There really is some special bond you two have and your face lights up whenever you talk about her.

None of us know how the future will go, but we will do everything we possibly can so you can lead a normal life.

We love you so much and are so very proud of you.

All my love

Mum xxx

 

ME Awareness - Day 6 A letter to C

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38 comments

    1. Thank you, the sad thing is a lot of people and including medical professionals are not aware of the symtpoms. I have lost count of the number of times we have been to hospital and we have had to explan the illness, explain the symptoms while they google it, and then after all that have to argue and fight that she is not just a lazy teenager x

  1. I think ME is such a terrible thing to live with, especially if you are caring for a child with it, because there is not enough research into this debilitating illness. The amount of people I STILL hear saying it doesn’t exist is outrageous.

    I know a friend who had it for four years and tried Mickel Therapy and believes she is cured. I found it hard to get my head around her being better so suddenly. And I’m sure it doesn’t work for everyone, but maybe it’s worth looking into? I have an undiagnosed neuro disease, still trying to label it, and am thinking of giving it a go.

    Much love to you and your Bambi xxx

    1. Thank you, I have heard of the Mickel therapy but not really looked into it fully. We are currently going down the lymes and co-infection route which is costly but I do know a lot of people who has proven positive, as the tests here always come back negative. So this is another thing that is wrong.
      I hope you finaly get your neuro disease sorted, I know that getting a diagnosis with a name is bitter sweet as you now know what you are dealing with, but also sad you have that illness x

  2. ME is outrageously misunderstood and grossly under-researched. There may be so many people out there who don’t even know what is wrong with them. The symptoms can be confused with other conditions. Awareness week is a good idea to reach out to them. Hope the medical community can come up with something soon.

    1. Thank you, ME is very misunderstood and often you are made to feel lazy or faking illness, one of the things I was told early on is believe what C is saying as she needs to feel believed. This is why we fight so hard for support for her. There just is not the medical support that this illness needs and this is something that needs addressing urgently x

  3. ME is awful and the fact that there seem to be next to nothing known about it, if / how it progresses and the different issues it brings on in the body. Thank you for bring more awareness to it.

    1. Thank you, there are professionals out there who do study the illness, we had an amazing consultant but unfotunately he retired from NHS and now just does a private clinic whilst also studying the illness, but he only sees adults now. We desperately need more consultants like him especially for children as there are just not the facilities for our children to have the medical support they need x

    1. Thank you 🙂 I wanted to use awareness week to share every aspect of ME from what it is to how it affects the sufferer and family, to the lack of medical and additional support x

  4. I didn’t even know children could get ME – Just goes to show how little awareness there is about the subject. Must be awful.

    1. Me has very little understanding unless you know someone who suffers, which is why I wanted to use ME Awareness week to raise awareness and share what ME is and how it affects daily life x

  5. It is hard to find good doctors. Everytime I read your posts, I can only wish for your child to find some remedy soon.<3 Having a online friend is really helpful. It's good she loves drawing, the art can help to divert her mind.

  6. This is such an emotional letter and you are incredibly strong as a person. Thank you for raising more awareness x

    1. Thank you I do try to be but have my moments, but one way of channel my weaker times is raising awareness which has had a great response this week x

    1. Thank you, I tried to write a post on a different side each day to try to show how it affects the sufferer and family life as well as the usual symptoms x

    1. Thank you, it is hard as it is for any parent but we are a strong family and get ourselves through the tougher times

  7. WOW, this is such a heart felt post. The courage that you and husband have and love for C is so beautiful. I truly hope all goes well in the future 🙂

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