Life with a Livewire

This piece is brilliant. So very relatable and written in a way that I can only aspire to. I loved the humour in it too. It’s how we get through. Thank you for this, Archie

@TheShowstoppers Ends with Peat being alive after all

@TheShowstoppers musicals: Cats / Matilda. Ends with a cat and weasel rescue centre being built

@RachelAdamSmith @CarersLeeds This is awful. We have been in similar position, nurse looked taken aback when I explained my husband needed a bed, said she’d ‘see what she could do’. A camp bed was produced but had to push for it. Last thing we needed when our child was having seizure after seizure.

@meropemills @HelenRumbelow Thank you Merope, for your work in this area. My child has complex needs and severe epilepsy. We have been in serious situations where we desperately wanted a second opinion but had no clear route to ask. This can make a huge difference for families like ours. Thank you, Sharon

“A reader of The Times commented “my husband was saved by this process.” Thank you @HelenRumbelow for taking the time to talk to me about how Martha’s Rule can help make the NHS better & safer

@richjamesuk @theipaper Hi Rich, I loved your piece. I am a parent of a daughter with a rare gene too. She's now 10. Life is full on but wonderful. In my experience the pain is real but the joy intense and powerful. We have learnt so much. Best wishes to you and your family.

I am still blogging away but my posts have not been auto shared for some time. So here's a link with lots of new posts. lifewithalivewire.wordpress.com

@HuaweiMobileUK I can't get a response from live chat, phone or email. My Freebuds have broken and the repair form is saying repair centre not found so I cant send them in. Please help.

@TieredOT @SaskiaGrassie A very interesting question!

@SaskiaGrassie @livewire_life So much this Let’s not do things that reduce agency - makes sense Interesting I wonder if/suspect we do it more do it more for ‘mum’ than ‘dad’

Parent & carer identity, sense of self & agency vitally important @livewire_life When so much can be stripped away thru a caring role, removal of name can be damaging & significantly impact relationships & collaboration. Some parents don’t mind generic terms. We can always ask!

Mum lifewithalivewire.wordpress.com/2023/03/19/mum/

Strikes lifewithalivewire.wordpress.com/2023/02/01/str…

Latest blog. It's been a particularly tough week. #epilepsyawarenessmonth lifewithalivewire.wordpress.com/2022/11/05/sto…

A brief summary of Johnson’s legacy. His impact and destruction will be long lasting and deeply felt. Truss and Sunak supported him and many of the people and systems that enabled all this are still there. The country needs change, a bold new government and a fresh start #Labour

Are you one of the missing voices? We want to hear the views of the entire #epilepsy community, from every walk of life, to ensure the UK Epilepsy PSP is truly respresentative! Make sure your voice is heard and have your say here 👉 bit.ly/3Tbx6Nn #UKepilepsyPSP

Do you have #epilepsy? Do you support someone who does? @EpilepsyRUK survey to ask you what their top 10 priorities should be Take part: buff.ly/3pIT4JX Closes 1 Sept 2022

Holidays with a Livewire lifewithalivewire.wordpress.com/2022/08/26/hol…

@stephen_collins @dallimorehelen1 @swimmaf

Now here's what I'd write if I were a better writer...

@EvaWiseman Wow. Beautiful. This resonates strongly.