Edith Solenne Monk

Another budget… another year kicking the rusty weather beaten social care can down the road… 🙄

@shandymitford Yes I got on anti virals which are working quickly luckily but I’m just so fed up of being unwell. And agreed I never appreciated how painful shingles are!

I now have shingles…, excruciating pain, desperately trying to avoid it leading to any other complications. Crossing everything to have 6 ‘healthy’ months with just MS… 😔

Returning to work after 8 months of maternity leave… can I find a wheelchair accessible taxi again?! Only if I go in after school times and arrive at work at 10 🤦🏻‍♀️😫 being disabled is fucking tedious.

@rolandmcs 🙈🙈🙈

"Britain will not rejoin EU in my lifetime, says Starmer" Starmer now out-Starmering himself on the EU. theguardian.com/politics/artic…

@vsmacdonald This is quite usual unfortunately- care agencies won’t pay for this

Just learned of a man with cerebral palsy, a part-time cleaner on minimum wage, now being told by the company that employs his carer that he will have to pay that carer’s expenses incl lunch and drinks. Surely this isn’t allowed?

@touretteshero Abso fucking lutely. Carers get sent to me and I see the light in their eyes as they want to chat and have a cup of tea while i tell them all about my illness. It comes as a shock to them that I don’t like small talk and want them to practically help me.

I think I must be doing being a disabled person wrong because from the photos used to illustrate any disability or social care stories I should be doing WAY MORE holding hands with my PAs. No wonder so many fail to imagine us leading full lives which such repetitive imagery.

@MSNysara Coffee 🤷🏻‍♀️

What else can I take for Fatique? Seeing my Neuro soon and want to switch meds. What is helping you? #ms #fatique #mecfs Happy for retweets! Thank you!

@Drew_Hyndman @MarkWebb_ For me, it allowed me to cut to part time work. My fatigue and pain meant I couldn’t continue full time work. Without it, I would have to have stopped working altogether and lived entirely on universal credit.

Do you get PIP? (Personal Independence Payment) If so, what extra costs does it cover/help to cover? For a BBC Podcast recording tomorrow! Feel free to DM me or reply #DisabilityBenefits #DisabilityTwitter #PIP #PiPayments

@UberEats this discount isn’t being applied at Waitrose though I seem to meet the T&Cs 🤷🏻‍♀️l

@dirtylikecandy For sure he’s grieving. It’s just sad my reaction is ‘I wish I was diagnosed at 71’ 😔

Maybe it’s the contrast of disease at 71 against a successful career and life prior… but, having been diagnosed w MS at 16 I genuinely struggle to sympathise. 🤷🏻‍♀️illness makes you bitter like that

‘staff were not trained to push different types of wheelchairs’… This is the type of bullshit I hate about the UK ⁦@EurostarUK⁩ WHAT TRAINING DO YOU NEED TO PUSH A WHEELCHAIR?! How about fricking shopping trolleys?? They’re not army tanks 🙄 theguardian.com/money/2024/apr…

@BusyBeesLainey Ah ok interesting thank you

@thinkindecimals I added drops to his food/drinks as he came off formula, about 12 months (I think) but they were not good tasting so it was difficult. The good tasting chewy ones are mostly all age 3+ that I found.

MSers: How much vitamin D to give to my baby to prevent MS? They’re getting the RDA through formula milk but should we do more? #multiplesclerosis #vitD

@g0ldf1nch Yes true but the uk isn’t sun rich 🙈 enough though I suppose

@thinkindecimals I just wouldn’t mess with recommended doses for children. But D from sunlight is worth a great deal for them

@BusyBeesLainey Why did you only start at 2.5 years?

@thinkindecimals Didn't add anything to the formula, only exclusive breast milk needs vitD drops. Started 400IU jelly chewies when 2.5yrs. Drops are rotten tasting so at least the Vitabiotics taste nice! I'm not wholly convinced it's all the answer to prevention but can't hurt ☺️

@g0ldf1nch As adults we’re advised to take more, so it seems like a no brainer 🤷🏻‍♀️

@thinkindecimals Stick to the RDA. Make sure they get plenty of sunshine all year around. I always told my daughter’s school to do everything to get her outside even on wet days. Luckily, we’re in Manchester so it’s kind of how we roll.

I am in total amazement that my disfunctional body grew a baby, it truly feels like the womb and nervous system operate entirely separately. 💜 thinkindecimals.wordpress.com/2024/02/12/a-c…

@AbiBuddComms I me that’s loads! Xx