Why Life-Saving Surgery Is Essential


In April I made the journey to London to have the all important upright MRI scan of my upper spine. I’d been struggling with symptoms for years including sight loss, memory issues, cognitive problems, poor balance, frequent falls and deterioration in my mobility. I knew deep down something wasn’t right yet it took the kindness
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When I was four-years-old a speech therapist told my mother that my inability to speak would right itself. Her GP told her not to worry about my severe sleep problems and that I was simply a fussy eater for only eating jam sandwiches and yogurt. The self-harm and eating disorder I developed as a teen
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Getting My New Wheelchair


A year ago I was speeding through the forest, racing through puddles and loving the freedom of moving all by myself in a super duper wheelchair . I was road testing a very special powered wheelchair called the Dragon from Dragonmobility. My condition had deteriorated enough that I was no longer comfortable on my scooter and
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When you have a complex illness you can spend half your life in hospital. Long and frequent inpatient stays are common, agressive and difficult treatments can be tough on your emotional wellbeing, and multiple appointments a week can be exhausting. It is hard work living with a complex illness because many doctors have very little experience
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Sometimes Chronic Illness Wins


Well, what a bundle of fun I’ve been having this past month! My chronic illness has been beating me and as a result I’ve not had chance to do any blogging. Recently, my health has succumbed to a bombardment of complications and deteriorations. EDS can cause issues with the brain and spine due to weak
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Three years ago I was bedridden and unable to sit up on my own.  I had gone against my doctor’s advice and tried to get back into work but it didn’t go quite to plan.  Starting work as a self-employed artist I pushed my body too far trying to get my business off the ground. 
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