It is fittingly ironic that yesterday, we received further communication from genetics regarding the 100,000 genome project (you can learn more about this: https://www.genomicsengland.co.uk/about-genomics-england/the-100000-genomes-project/) on the eve of Undiagnosed Children’s Day. Whilst the letter outlined what we already broadly knew (nothing has so far been found to explain the complexities related to Minx and potentially… Continue reading Happy Birthday to You – My Swan Song
Have you ever felt like running away? Just dropping everything, grabbing your car keys/travel pass/comfy walking shoes & heading off into the sunset?
Who cares for the carers? There are many days where I feel like waving the white flag of surrender. I give up. Stick a fork in me, I’m done. Substitute your own personal favourite motto for when the 💩💩 just keeps on coming and you really don’t want to face it anymore. As a rule, I am… Continue reading Relentlessly Relentless….
The clock relentlessly ticks & chimes. It is insistent but dull; a constant in the background, a drone of bees. When I wake there are moments where I cannot recall what or why but the fog lifts and I am jabbed, sharply. Ouch. Why is time so tritely passing in the blink of an eye yet… Continue reading Tick Tock
Busy. Keeping busy. Every waking moment. Planning, doing, moving and shaking; albeit not in the term of “big business” more anxiety and jangling nerves that leave my hands jittering and spilling drinks, dropping bottles (gaviscon off the garage floor anyone?!) and generally causing me frustration and embarrassment. My mind is never still, nor am I… Continue reading Smoke & Mirrors…
I’ve been truly over-whelmed and grateful for all the messages, emails, texts, visits and all round offers of support in the last few weeks. If ever I needed a kick in the backside and a reminder why I am actually privileged beyond all doubt, the last 9 weeks have galvanised that thought process entirely. In… Continue reading A work in…. progress??
49 days – 7 weeks x 7 days. Counting down like a child to their birthday, Christmas or a holiday. But I am no child (despite numerous agencies doing their best to make me feel that way) nor am I counting down. Up I go – the number of days I have spent in crisis… Continue reading Calcification
I’m pretty sure that’s not the most inspiring name for a blog post, nor one that makes you think “oooh, this will be a rip-roaring laugh which I must sit down and digest with lashings of ginger beer & a cream tea (a touch of the Enid Blyton’s has come over me this morning; I… Continue reading Melancholia….
I’ve noticed a theme in many of my blog posts – the titles often spring to mind based around music. Although I’m not quite sharing the lyrical prose, more precisely the sentiment behind Shakespear’s line: “if music be the food of love, play on!” I think it’s apt that music evokes so many thoughts, memories,… Continue reading Shiny happy people….
A day in the life of …