@LozzaFox A benefit (which may not be relevant to ur chart) is that it provided solid evidence to reluctant employers that WfH is viable. A work/life balance is achievable AND gave those of us with disabilities more opportunities to work-just my experience 🤷♀️ #SPS
@audibleuk - TY for a continued brilliant selection of books to listen to. Can u help tho - I LOVE a series to binge & wonder if there is a way to apply an in app option to follow an author for new releases. Apologies if this is obv& I can’t see for 👀
@nicnicsx@akunamatata6@virgosgrooviest Thank you my lovely little sister for always being there - always ready to rescue me - love you millions Nics xxx
@myCaseIsCamel1@akunamatata6@virgosgrooviest A bad episode feels like what I imagine child birth is like - ur body kinda hums and then ur body goes painfully rigid- it feels like ur body is genuinely going to snap in two 2/2
@myCaseIsCamel1@akunamatata6@virgosgrooviest I’m not sure what sleep paralysis _feels_ like. For me, as the spasms vary in intensity, a mild episode feels like u are ‘stuck’ & happens almost constantly - like ur brain thinks ur moving but forgets to tell ur legs. A bad episode can last HOURS 1/2
@Long_Snake_Moan@akunamatata6@virgosgrooviest I remember being on a bus early in diagnosis and a teen came from back of the bus and leant over me to close the window - the sound of it slamming shut made me jump about 6 inches of seat & the kids giggled loudly at my reaction (there was no malice)😆2/2
@Long_Snake_Moan@akunamatata6@virgosgrooviest No such thing as a stupid (genuine) question - I can only speak for me and earphones etc can work in certain situations but aren’t practical in everyday situations - it’s normally unexpected noises/touch/people innocently appearing behind me 1/2
@X77GAP What would I do without u! Always my hand holder, no matter how many times I squeak “don’t let go, don’t let go!…”and leave fingernail marks on ur hands! #SPS
@JeanSpurvey @BBCWorld This made for interesting reading - appreciate it. Whilst it doesn’t change anything for me, as far as I can tell, I’m sure my neurologist (who has always been accessible, open & v honest re his options within the NHS) will be able to add to the conversation.
@akunamatata6@virgosgrooviest Thank you and everyone else sending their kind thoughts- I’m very very lucky- I have a great neurologist, an amazing loving family, the most supportive bf and incredible friends (no particular order!). As with all chronic illnesses/conditions, u just get on with it 🤷♀️.
@akunamatata6@virgosgrooviest Same!! But almost about 14 years for me. For high profile person to highlight the condition will hopefully help…and prevent some of the funny looks when ur screaming in the street like a banshee as a full body spasm has come from nowhere and ur unable to move!
@JeanSpurvey @BBCWorld I have SPS - there are tests that confirm diagnosis aswell as brilliant doctors that do their best. Lack of funding &cost of treatment meant I didn’t get the infusions that will hopefully make life easier for 10 years - c4 years diagnosis. No one has tried to euthanise me to date
Beware the Ancient Hungarian Horntail! January Adversaries Event https://t.co/wjlUuDR9bK via @hpwuhub @HPWizardsUnite ZERO POINT WHEN CONNECTION KEEPS CRASHING!