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Learning to let my children see me using a ventilator on a daily basis, despite the heartbreaking worry of how they’d react. Would the machines I depend on to keep me with them longer, frighten them? And would even they still love me the same? Continue reading Adjusting to NIV Around My Children
Here in the UK on the NHS, physiotherapy for progressive muscle-wasting conditions stop once you reach age 18. The way it was told to my parents was that the NHS could no longer justify the cost of weekly/fortnightly therapy that would never better the young persons ultimately incurable condition, despite if maintain physiotherapy benefited the individual in some shape or form. Here’s my story trying to re-access this vital therapy… Continue reading Physio After 18 | Incurable muscle-wasting conditions ¦ Part I
*SENSITIVE CONTENT* I open up about the rare lifelong complications of my Spinal Fusion surgery I underwent aged 14 for severe Scoliosis. When the chronic pain began exactly, how it’s changed over the years, what my medical team and I have trialled to manage it, aswell as coming to terms with the very real likelihood I’ll live with it for the rest of my life. Continue reading My Rare Complications from Scoliosis Surgery
