I’m not usually one for marking anniversaries, not sad ones anyway. But, this week marks three years since the the Grenfell Tower fire which for us marks three years since my son was diagnosed with Myalgic Encephalomyelitis (M.E.)
When you live with chronic illness ‘crashes’ are inevitable no matter how hard you try to avoid
them. Getting the balance between doing too much or too little is like walking a tightrope. Here are my top tips to spot and to manage crashes.
In April I had a call from the head of my children’s primary school to ask if my two youngest children (who attend the school) would like to…
I’m fine. I use this reply all the time when people casually ask me how I am. Is it the truth? What does ‘I’m fine’ really mean… (These…
My Pilates journey. At the medical conferences that I attend, be it related to Charcot Marie Tooth disease (CMT), Ehlers-Danlos syndrome (EDS) or for EDS kids, people ask the experts…
My Relationship With ‘it’ Looking back, way back it has always been there, lurking in the background ready to pounce but the first real memory I have of it really…
This post sums up the whole process of getting my daughter her wheelchair, from referral to her first outing and all the bits in-between. The practicalities and emotions…
We all know how hard it is when someone we love is poorly, when your child is throwing up with a bug, when they are hurt and upset…
I have lived with pain for as long as I can remember, it’s now chronic, it’s never going away. I have Charcot Marie Tooth disease, a neuromuscular disease…
