This is the first post, in what will become a regular feature on how CFS/ME came into our lives. I will start by recapping on our story of how we got here. How We Went From Normal To Living With ME
Table of Contents
How It Began
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. Where we were told it was Glandular Fever.
Eventually, we were referred to a Consultant who arranged more blood tests and an MRI scan.
Meeting Our Consultant
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.
New Medication
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, She 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/ME 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. Which means 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.
Returning To School
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/ME 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.
This must have been so extremely frightening and worrying for your daughter, as well as for you. I can’t imagine seeing your daughter in so much pain and not being able to immediately provide any help. I’ve never thought about it from a parent’s POV either about seeing others going on days out etc, I can imagine that was extremely hard for you to deal with. I am glad that you’ve found a way to laugh about it and make light of the bad days.
It is hard on everyone, which you do not realise until you are going through it.C is a lot older now and she knows how to read her body and how to live with it. But at the beginning it is hard and very upsetting as a parent
First of all I think that you are doing a great job considering the circumstances, so keep your chin up. I can only begin to imagine how you are feeling and how tough things must be at times. Sending hugs xx
We are a long way in our journey and only now starting to be able to manage the illness, but I do know sadly that many others are starting this journey and it is a lonlely and frightening place
I can’t even imagine how heartbreaking it must have been to receive the diagnostic. Living with a chronic diseases from such a young age shouldn’t happen to children… I’m so sorry it happened to your daughter and I with her as many painless days ahead as possible.
It is hard as a parent, as you simply can not make things better, the sad thing is she is not alone there are so many children out there suffering
For a child that young to go through that much pain without a full understanding of it must have been hard. When you’re that young, being social and being accepted amongst peers is so important. It must have been difficult for her to comprehend why she was different from everyone else, why she couldn’t do the stuff every other kid was doing. But I know for sure, what got her through those hard days was having you as her rock, making the impossible happen and doing everything you can to make C feel like every other kid out there. She wouldn’t be the humorous young adult she is today
She is far from humorous today as her niece woke her up early this morning. It was hard and heartbreaking especially holding her in tears and not having the answers or be able to make it go away.
She is a tough little cookie though, and she has gone through so much to get where she is now