The ups and downs of living with a teen

CFS

A little update

I thought I would do a little update today, for those of you that have been following my weekly updates and my Daughters illness.

As you will know, from my weekly update last Saturday, we had been told unofficially her diagnosis, but until I had seen it in black and white I was not going to say anything.

Yesterday, the head of KS3 at her school rang me to arrange a meeting for my Daughter to return to school, this is something I have been badgering them about for a long time, as she needs support.  I have been in contact with her Attendance Officer, and had told her that we had been told the diagnosis and it was what we thought it was, but was waiting on the letter, and had been asking if school had received their copy, which they had not.

My meeting was at 11.10 this morning, and as I left home before the post, I asked if they had received a copy, which had come in just before I arrived and I saw it in black and white for the first time, standing in the reception area of her school.

I went into the meeting with the Deputy Head, Head of KS3 and Attendance Officer and between us we have come up with her returning to school, tomorrow :). She will be going in half way through lunch and then have 2 lessons, she has a lift pass to help her and her best friend is going to be her buddy, so she can help her and use her card to get help, and as they are have all lessons in together (luckily) they are going to arrange for them to sit next to each other.

The diagnosis, is CFS – Chronic Fatigue Syndrome, some others call it ME. We have known this for a long time, but nothing prepares you for seeing it confirmed in black and white.

Now we do have the formal diagnosis, we can start to move forward and get the help and support that she needs.  For those who do not know what this is, or fully understand, there is a video on my facebook page which you can view here

Thank you to everyone who has sent me messages throughout her illness, it really has meant a lot to us.

Thank you for visiting x

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16 Comments

  1. Whilst I’m sorry you all have to deal with this, I’m pleased you finally have a solid diagnosis. We’re waiting on something similar for our youngest and I know that it’s the not having that diagnosis that’s hardest to cope with.

    1. It is a strange feeling while seeing it in black and white hits you hard, it is also a huge relief finally seeing it and knowing we can now move on and help her properly. I am sorry you are going through similar if you ever need to talk please feel free to message me x

    1. I know, it is such a weird feeling sadness that the diagnosis is what we thought, but relief also, at least we can now move forward x

  2. I am glad you finally go a diagnosis but not glad that it is CFS/ME it is such an awful thing to have to deal with, your body just not regenerating energy as it should. x

    1. We have known for a week or so that this is the diagnosis, but did not see it in black and white until yesterday and it made it all official. Even the simplest things tire her out so much, it is heartbreaking watching her and knowing how much her life has changed x

  3. Glad you finally have a diagnosis confirmed in writing, at least now you can move forward and get her the proper help she needs. So sorry that your daughter and your family are having to go through this at all xx

  4. Whilst this is awful for your daughter and the family to have to deal with hopefully now you have a diagnosis you can get the support you need x

    1. I do feel a weight has been lifted as we now know what we are dealing with, and hopefully can start putting things in place to help her x

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