Tilly Moments

ME\CFS Is a Big Fat Bully

Tilly Don't Like Bullies!

A month ago I explained the constant circle that Angus and I are in, expecting that circle to be broken at some point as the weather changes. In fact Angus managed to get back to school for a few hours each day and we extended that time by an hour on returning back after half term. He was more tired but we expected that. But suddenly on 29^th February and Angus broke out again in soaring temp (40 +) and painful hips. A trip to the hospital confirmed my fear, ME/CFS has struck again and this latest symptom is unlikely to go away any-time soon.

Angus, it has to be said has taken this on the chin - I really don’t know how he does it! Perhaps by naming and shaming ME/CFS it no long can bully us, we know we have to fight and that is exactly what we will do!

Our battle this morning is to find something Angus can eat. His appetite has depleted and his sense of smell, taste distorted. His most favourite foods are now hard for him to face. Children with this condition are labelled fussy eaters, but would a child really turn down ice-cream if it was their mostest favouritetest kind ever!! And normally would have walked over hot coals or sand to eat it? I think not fussy, just too ill to eat!

With this in mind I went down stairs and made some toast, put cereal in a bowl on the same tray and went into the lounge to have breakfast with Angus. Angus tires out when sitting at the table, and I have found if we have a slow start to the morning he gets less headaches, and has more energy later on. I ask him if he would like a drink. His anxiety hits the roof because he does not know if he is thirsty. He flaps like a chicken who knows it’s for the butchers block, comical and I find I have to stifle a laugh. I go and get a glass of water from the kitchen, and hand it to him, while I hold his hand. He looks at me with those confused eyes, and begins to focuses on the reassurance on my face, takes a sip and starts to calm down.

‘I don’t want to eat mum, I feel so sick’

‘I know my boy, but you have to try, your body needs energy.’

‘I know’ he replies with that resigned voice that yells at my heart strings ‘you unfeeling bitch’. I sit and eat the toast that I would rather be porridge with blueberries, but the blueberries smell make him feel even sicker, and I need to encourage him to eat. He munches on dry cereal dutifully. With each swallow I see his struggle. When he finishes he shows me his empty bowl. We smile, as the first days struggle is over.

‘Are we going for a walk today mum’ he asks,

‘No I think we will play with the dogs in the garden’ His face falls ‘how about we set up some jumps for them?’ I encourage him, he smiles and our second struggle begins. Angus now has to rest so that at 11 am he will be able to play with the dogs in our garden. Yesterday we went for a walk and we got down the road when his fatigue hit like a bolt out of the blue. His legs went to jelly and he was incredibly dizzy. Car drivers are not very considerate of a dog walker with two dogs and a ME/CFS child.  I was a little scared to how I was going to make the 300 yards back home, and now find I am a little hesitant about putting myself through that again. Even without the dogs I would not be able to carry Angus back home. Tilly also hates Car Bullies!!

Some hope from http://www.ayme.org.uk/news

On Friday 27^th February, there has been some coverage of new research into ME/CFS which is being described by the researchers as ‘the first robust physical evidence’ that ME is biological condition. This means it is not in your mind and cannot be controlled by your mind! 

Dr Esher Crawley, Reader in child Health, School of Social and Community Medicine, University of Bristol who has had some funding and is supported by AYME, said:

"Studies of biomarkers are important to help us develop hypotheses about this important illness.”

You can read her full report on the link above. In reality it means that they now know without a shadow of doubt that there is a biological cause to the immune dysfunction in many conditions. They now have to track down, through a parallel project how and why the dysfunction for many conditions are triggered and target treatment - at the moment there is no treatment available.

If they can establish this biomarker, this will then become the foundation of understanding this very complex illness causes doctors and will be able them to diagnose and treat suffers. It is a big hope, but a hope all the same.