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Edith Solenne Monk @thinkindecimals

Wheelchair user due to MS - Blogger - Think in decimals - UK

Joined June 2010
  • Tweets 1,154
  • Following 152
  • Followers 408
24 Photos and videos
Another budget… another year kicking the rusty weather beaten social care can down the road… 🙄
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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… 😔
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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.
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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
Rachel Horne@RachelHorne19
16 Apr 2024
Hmmm Jeremy Paxman says Parkinson's "makes you wish you hadn't been born." Hate comparing neuro-diseases, but the TV presenter was diagnosed at 71. (Average onset age 60). MS - average diagnosis 30. Pivotal time re career, relationships & having children. bbc.co.uk/news/uk-68795161
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‘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/a…

Left stranded and humiliated by Eurostar’s new wheelchair ‘policy’

In Paris staff readily help a passenger using a wheelchair to and from a train, but not in London

theguardian.com
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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
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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.co…

A child

I am in total amazement that my disfunctional body grew a baby. With so many uncertainties from the conception, and my body already having lost so much function, it truly feels like the womb and ne…

thinkindecimals.wordpress.com
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Where have 9 months gone?! My experience of advanced disability and pregnancy. Rare I guess. But I would have loved to have read this a year ago! #pregnancy #MS #wheelchair #MultipleSclerosis #Disabled thinkindecimals.wordpress.co…

Advanced MS & pregnancy

Did I say I was pregnant?! After what feels like years of research the last nine months have gone fast, pregnancy moves at a different rate to MS (and thankfully the NHS is forced to follow). Parti…

thinkindecimals.wordpress.com
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I tried… new blog #tysabri #ms #dmt thinkindecimals.wordpress.co…

Tysabri injections, nice idea

After 10 years, Tysabri is evolving to become simpler to administer. One of the strongest MS drugs, and up until a few years ago, the only ‘highly effective’ treatment available, has in…

thinkindecimals.wordpress.com
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Email today from my care agency that all my morning calls will be at 7am starting TOMORROW (currently between 7/8.30 depending on my working days). No consultation. No notice. Fucking #socialcare
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The hoist at Hitchin swimming pool has been broken for 3 months. @NorthHertsDC an alternative method needs to be found to let disabled swimmers use the pool? Following the Covid lockdown, I had to re-learn to swim & it was very difficult. We should not be in this position again.
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High kerbs, cobbled streets, and upstairs terraces… But still… Take me back ☀️ #wheelchairtravel New blog - thinkindecimals.wordpress.co…

Marrakesh: when attitude outweighs infrastructure

A fairly impulsive holiday to Marrakesh this spring, when I was just craving some heat and sun (and easyJet obviously sensed the vibe and launched sales). I didn’t expect an old African city …

thinkindecimals.wordpress.com
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Edith Solenne Monk retweeted
Led By Donkeys@ByDonkeys
17 May 2023
Farage has finally admitted it. "Brexit has failed." Chip in now and let's make sure everybody knows what he said 👇 crowdfunder.co.uk/p/lets-put…

Make Farage's new Brexit slogan famous

Nigel Farage has finally admitted that “Brexit has failed”. Let's get his words up on giant billboards across the country

crowdfunder.co.uk
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Overheard on the #tysabri ward ‘i was in a wheelchair with a relapse & I told myself ‘na this isn’t what I want’ & forced myself to get walking again’ Cool story bro… when even #MS patients can tell you disability’s in your head 🙄🙄🙄
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I managed to move into a bungalow, just a few #disability adaptations needed… simple no? New blog - Hi again social services – think in decimals thinkindecimals.wordpress.co…

Hi again social services

It must be that enough time had passed since I was last battling social services, that I found the confidence to think moving would be okay… After all, it’s a bungalow, it’s in the same town, just …

thinkindecimals.wordpress.com
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Why on earth have @DWPgovuk redesigned the MONTHLY #AccessToWork claim form from 2 pages to SIX ?! I thought the idea was to make work easier for disableds 🤦🏻‍♀️ #cantevenholdthisall #strugglingwithpaper
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SEVEN unsuccessful canular attempts before today’s #tysabri infusion 😩 My arms hurt.
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No staff to assist at Deptford station at weekends, totally fine as we all know wheelchair users only go out Monday- Friday right 😡😡😡 @Se_Railway @TLRailUK
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Two years crawling through waiting lists in lockdown… it was worth a try #botox #MultipleSclerosis New blog: thinkindecimals.wordpress.co…

I got Botox! (in my arm)

Remember lockdown number one in 2020, when all physio stopped, swimming pools closed? Well, at that time I lost movement in my right arm. My right hand has had poor dexterity since a relapse in 201…

thinkindecimals.wordpress.com
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Literally yesterday I asked a social worker about having a ramp & widening doors in my potential new bungalow, The answer: ‘ we advise people to only move to places that are already accessible‘…. Cool idea hun 🙄😡
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