The ups and downs of living with a teen

CFS

CFS/ME

This is the first post, in what will become a regular feature, I will start by recapping on our story of how we got here.

My Daughter and her brother just hours before illness hit
My Daughter and her brother just hours before illness hit

On New Years Eve, we were with friends about to cheer in the New Year, when my Daughter (who is 12) came over ill and her legs went ‘funny’ and shaky.  She hadn’t really been doing anything overly exhausting she was sitting with other children chatting and playing games.

She never recovered, we had various trips to the GP and various trips to the hospital for various blood tests, and we were told it was Glandular Fever.

Eventually, we were referred to a Consultant who arranged more blood tests and an MRI scan.

During this time, my Daughter was in pain with her head and legs and the slightest thing would wipe her out, she kept trying to go to school, but just spent her time in the medical room.  She would cry in pain.

She was given various medications to try, until we finally found one that helped the head pain, although she still suffered with the tiredness and leg pains, she was a lot happier and got a bit of her old spark back.

Her conditions got worse, to the extent she has days where she could not walk, the amount of times she has tried to get up and been in so much pain and just could not walk with me holding her up. It is heartbreaking.

She has recently started physiotherapy, which is still early days yet so will keep you updated.

We have found the best way for her to cope with her CFS is to laugh about it, as they say laughter is the best tonic.  So on her days where she can not walk, we call it her bambi days.

My Daughter obviously knows she has CFS and we have spoken to her about it, she knows what it is, we have answered all her questions on it, and she has been an absolute star in how she is coping with it, we could not be prouder.

She returned to school yesterday for the first time in weeks, for the first time they saw just how bad she is, but she was glad to be back, the amount of tears I have dried where she has cried that she just wants to be normal, and go to school, the tears at weekends and school holidays where her friends are out doing things and she can not.

I have promised her once we can work on her tiredness and her walking, she can maybe try going out with them, to somewhere I can drive her to and drop her off and pick her up after.  Just so she can be her and out with her friends. Who are very supportive of her.

From a parents side as a carer of a child with CFS or any chronic illness, it is a heartbreaking and lonely place to be.  You soon realise who your true friends are. The pangs of jealousy you feel when you see posts about days out or things they have done, and you know your child can not do that, seeing your child so down as their lives have had to change and she can not go out and do the things she enjoyed doing, your whole lifestyle has to change.

I have set this page up on my blog, as I obviously have spoken about this in my weekly updates but to hopefully let others know that they are not alone, and maybe find this as a support network.

For those who do not know or understand what CFS/ME is I posted this video on my page that explains what it is like to live with it

Thank you for visiting x

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8 Comments

  1. I am so sorry that your daughter, and indeed your family is going through this. Life really is unkind sometimes, but certainly your daughter seems to be a real little fighter. I send you all best wishes and thoughts xx

    1. Thank you, she is such a star she really is. I wanted to set up a separate page to move it away from my main blog, but also make people aware. Mainly because for parents of a child suffering with it, and for children, there is very little support and it is quite a lonely place to be. So it is more of a help for others hopefully and somewhere to share x

  2. I’m so sorry that your daughter has this. I to have been diagnosed with this condition along with ehlers danlos syndrome. Has she seen anyone about pacing her activities. Its not easy but you can end up in a boom and bust cycle. If i’m doing something one day for an hour or so then i will have a rest day the next day. Thankyou for sharing your story x

    1. I am so sorry you are suffering this as well, we do try to pace her, if we know we are doing something she rests up, and the day or two after she is totally wiped out. She has just returned to school only a couple of hours a day, she did Monday and Wednesday as was wiped out Tuesday, and she has physio today so will not be in. We are learning to live with it and do things at her pace. Thank you for your comments x

    1. It is scary how quickly and out of the blue it can happen, I did not really know much about it before she got ill, but the amount of people who have it or know someone who has it is amazing. She is doing so well, and I think if she carries on as she is, she will get more of a life, but still a long way to go x

  3. I’m really sorry that your young daughter is suffering, it must be a very lonely time for all of you. I hope that you get to talk to other parents who care for a child with chronic fatigue xx

    1. Thank you, it is lonely as we know no one with a child who suffers, so it is a case where we are totally on our own, and having to feel our way through this. Hopefully things will settle soon. x

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