A child
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by Edith
1w ago
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 nervous system operate entirely separately. The caesarean went well (the hardest part being holding my body in position for the epidural). I tentatively waited for an MS flare post birth, but the few days of blurred vision seemed to be all, with my Tysabri infusion following two weeks later. Doctors are shrugging their shoulders at months of bowel disturbances since – which usually means it’s MS. But ..read more
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Advanced MS & pregnancy
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by Edith
3M ago
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). Particularly this last trimester. When I was originally looking up advice about MS and pregnancy, desperate to find information, all that was available was from the relatively undisabled. It felt like a wheelchair user with advanced MS was really getting pregnant into the unknown, and midwives, doctors, and social workers seemed equally stumped (was I the first person ever?!). Actually, compared to MS, i ..read more
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Tysabri injections, nice idea
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by Edith
6M ago
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 involved an afternoon spent in hospital every four weeks. Only dispensed at regional centres, it’s generally not even your local hospital – For me an hour away in North London, with all the congestion charges and parking problems included. So the announcement that Biogen were making Tysabri available in an injectable format wasn’t unwelcome. Currently an hour-long IV infusion ( with another hour of saline after ..read more
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Marrakesh: when attitude outweighs infrastructure
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by Edith
9M ago
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 to be super accessible, but it had got to the point where I thought sitting in a street at 30° was preferable to the UK so went for it. the Riad The hardest part was always going to be finding accommodation without paying a fortune for a modern hotel, but I had a stroke of luck on Google and found a city centre guesthouse ‘Riad’ offering an accessible room… Gold dust. Riad Abaca Badra have a ground floor ..read more
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Hi again social services
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by Edith
1y ago
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 a few small alterations needed. Unfortunately, though, I think unless you’re in an accessible council house and unemployed, social services can’t help you. The options available to councils and occupational therapists has been cut and cut through progressive losses in funding, and they’ve now got very limited options.  A ramp and shower. That’s all I need. The bungalow so far has a bath fitted ..read more
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Holiday from ‘health & safety’
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by Edith
1y ago
It can’t be just me who gets thoroughly frustrated at the health and safety restrictions we always face in the UK… Far from helping me in any way, it just seems to limit choice, increase cost, and further separate us from the healthy population. Which is part of the reason I love going abroad, it’s always a bloody relief. It’s not all countries of course, the USA is even worse, but this summer holiday to Cyprus was no exception (yes, I’m slow to post this). Firstly, getting off the plane. Not only was the disabled assistance there ready, but the assistant staff are able to transfer me into the ..read more
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I got Botox! (in my arm)
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by Edith
1y ago
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 2010 (one of my last classic ‘relapses’). but I noticed then that I suddenly couldn’t lift my right arm up, for example to tie my hair, it just wouldn’t move above shoulder height. As anyone with a health condition knows, the support available during that first lockdown was non existent. I hoped that when exercise resumed the strength would too, but by the time I had my annual consultation with my neuro ..read more
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Adjusting into 2022
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by Edith
2y ago
2022… what?! I know I’m not alone in feeling like the last two years don’t count. And I realise it’s already the end of February so hardly counts as the New Year any more. The last two years made it easy to fall into the isolation lifestyle where the days and weeks just slip by, but with all UK restrictions ending last week, as much as I will continue being Covid careful, it’s time to shake out of it. The impact of the last two years on my health has been clear – I have lost mobility in my right arm. Despite lengthy work with a physio (first private, then NHS), I never recovered from the crash ..read more
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CSA social care campaign launch
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by Edith
2y ago
The Care and Support Alliance represent 75 UK charities who are all, in different ways, linked to and reliant on social care. The UK prime minister Boris Johnson had consistently promised to ‘fix’ social care… but with the pandemic and Brexit it seems to have slipped from his priorities. It’s a complicated, expensive problem with a human cost. I get that it’s not easy, but we need reform, we need funding, still. I spent an afternoon filming with the alliance and MS Society to share some of my experience as a care user. It’s been combined with David and Rasila’s stories to launch the campaign ..read more
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The baby dilemma… add in MS & disability
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by Edith
2y ago
The mid thirties baby bombardment is here, whether it’s the steady influx of friends/friends of friends/former school peers reproducing, or the targeted ads for maternity clothes and follow-on milk on my screens. I get that it feels like a huge decision for most people, but the extra complications of severe MS and disability are hard to process. As a younger, healthier girl in my early twenties I kind of assumed that I would have children. After all, having grown up with parents and school holidays, that was my template. As a good friend explained to me, it’s harder to imagine a childless life ..read more
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