ME Awareness Week 2019 – Extra Support

ME Awareness Week 2019 - Extra Support

Day 5 of ME Awareness week I am going to talk about the extra support our children desperately needs.

Education

Unlike healthy children, who go to school every day, children with ME or another illness can not have this luxury.  C like many other children struggled and tried to carry on at school.  Unfortunately, they can not cope due to the fatigue, the brain fog and pain plus many other symptoms.  Causing them to crash and become bedbound.  I was very lucky that our school worked with us trying different ways to help her manage school.

Eventually we had to stop and we were given 1-2-1 tutors, on C bad days the tutor would work with C at home.  On better days she would go into school for her tutoring.  Giving her a bit of a normality to her education.  Unfortunately I can not remember the last time C had a tutor session as she has been too ill.  Her tutor still pops in one day a week just to say hello and let her know she is not forgotten.

This in itself is heartbreaking as a parent of a child who was in the top groups in school, and who loved school.  But what happens when they should normally be going into further education such as sixth form or college.  For a healthy child  they just progress.  For a child with an illness it is a battle, that is so unfair.  Why should we as parents have to battle and fight for just because our children have an illness.  Are they not allowed education? should they be punished for being ill?

Counselling

It does not take a professional to understand that a child who is chronically ill, could be depressed.  They have gone from normal life to being confined to their bedroom over night.  They see the same people day in and day out, they see the same walls day in and day out.  That is enough for anyone to become depressed.  Do you know there is no services for children.  I have asked Consultants and our GP and there is nothing.  We were offered CAHMS, which we went to and was a disaster.

We were asked why we were there, and then told they do not know what ME is and would probably be unable to help her.  Remembering C is in the room hearing everything, I explained calmly why we were there and what we wanted from them.  She asked C about her illness and what is worrying her and C broke down and said she was scared of it and never being better.  We agreed another appointment where C went in by herself, she came out quite aggressive and C refused to return she did more damage than good.

Children need counselling, not just children that are ill, but there are so many children out there that need this service.  Why should age be a barrier.

Medical Professionals

I know I have already spoken about this, but we need the medical professionals to understand what ME is.  No one at our local hospital who we have seen understands it.  Every time we visit I have to explain what it is, while they google it.  We need someone who understands without having to face brick wall after brick wall getting help for our children.  My Daughter is getting worse, we have a Consultant who we never see, can never talk to.  We have a great GP surgery but they do not understand ME.  It is left to us as a parent to research and find our way.  Believe me talking to other parents you can find out so much more.

When are ME sufferers going to be listened too and be given the support they deserve.  The same as other sufferers of many other illnesses already receive.

 

ME Awareness Week 2019 - Extra Support

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Comments (14)

  • Monidipa Dutta 2 weeks ago Reply

    Now a days I am getting more children for counselling who are chronically ill. Understanding them is the most important thing here. I love your the way you are bringing these things in view.

    admin 2 weeks ago Reply

    It is nice to hear that there are professionals out there, this is something I need to keep on raising awareness about as these are things that our children need x

  • Rhian westbury 2 weeks ago Reply

    it’s nice that the tutor still pops in to check up on her even if she’s not able to carry on her education in the same way x

    admin 2 weeks ago Reply

    It is and she says it is so we know she has not been forgotten and still thought about, her tutor was saying on Friday that maybe when she is able to get up we can all go to the garden centre down the road for a drink just to get her out and not pressured into learnng straight away x

  • Claire Roach 2 weeks ago Reply

    It’s really hard getting the help/support you need for children with illnesses/disabilities. People don’t realise how much of a fight you have to put up just to get what you need.

    admin 2 weeks ago Reply

    You are totally spot on with this. The fights we have had it is like facing one brick wall and fighting to knock that down to be faced with another one, and others who are not in the ME community and other illnesses are the only ones who truly understand x

  • vidya 2 weeks ago Reply

    i was not aware of this disease until your post; and thank you for raising awareness on this as it helps the community be overall more supportive, more empathetic to people around us because we never know what they are actually going through

    admin 2 weeks ago Reply

    Thank you, raising awareness needs to be done and I feel I have made a slight difference in that from my little corner, ME is an invisible illness that many do not understand x

  • Jules 2 weeks ago Reply

    I had to look up what ME was. I work in healthcare and haven’t come across this either. It does remind me of a friend who complained of being fatigue all the time although she never really got an actual diagnosis. She was prescribed a stimulant (adderral) by her GP and seems to be doing okay now.

    admin 2 weeks ago Reply

    I know healthcare covers a very wide spectrum but this just proves that there is lack of knowledge out there. I am glad your friend is doing ok x

  • pooja Malkani 2 weeks ago Reply

    I completely agree with your thoughts here. I believe that some extra time and support can turn things around for our children.

    admin 2 weeks ago Reply

    It will and it is something that is not available, because they are children they are punished x

  • Kara 1 week ago Reply

    I don’t understand ME although I have heard of it before as a friend struggles with it

    admin 1 week ago Reply

    I am sorry your friend suffers with it, but you are not alone as the medical professionals do not understand it either

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