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Navigating Life & Motherhood with Muscular Dystrophy

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A Guide to | Nesting with a Disability

January 23, 2018January 27, 2019 ambitiousturtle24

A compilation of top disabled/wheelchair-friendly baby pieces that will lull expectant Mum’s nesting needs with practicality at heart. Continue reading A Guide to | Nesting with a Disability

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It's such a hard life being 3. Bless her, didn't make it past 6pm after her day at nursery. At least she just about finished her tea (as you can see by her ketchup chops) before she fell asleep sat up mid Despicable Me 2! Anybody else's toddler not make it to their usual bedtime on nursery days?

#pbloggersUK #pbloggers #bloggerstyle #Bloggerstribe #bloggerlife #allthoseblogs #bloggersofinstagram #influencer #mummyblogger #ukbloggersquad #parentingblogger #raisinglittlepeople #candidchildhood #letthembelittle #acupofmotherhood #dailyparenting #joyfulmamas #thehappynow #runwildmychild #childhoodunplugged #mumbloggeruk #toddlerlife #toddlersofinstagram #toddler I was sent this beautiful diary from our Secret Santa via a fb birth month group I've been part of since I was pregnant with Ava now 3 ½ years ago! Isn't this beautiful? Just the motivation I need on those harder days - to pick myself up, dust myself off and crack on!⠀
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If you're expecting a baby, I highly recommend joining a birth group on platforms like fb. Not only for that invaluable support and advice in the early days of Motherhood but for the life long friendships ♥

#pbloggersUK #pbloggers #bloggerstyle #Bloggerstribe #bloggerlife #allthoseblogs #bloggersofinstagram #influencer #mummyblogger #ukbloggersquad #parentingblogger #raisinglittlepeople #candidchildhood #letthembelittle #acupofmotherhood #dailyparenting #joyfulmamas #thehappynow #runwildmychild #motherhoodinspired #motherhood #mumlife It may look like I'm still sitting, but the tilt table and strapped down bit by bit is the only way my weakened muscles will allow me to weight bare through my legs. Something I lost the ability to do in mid childhood.

Weight baring is so beneficial for improving circulation, improving bone density, aids digestion and much more. Like many others with #MuscularDystrophy, I went without ANY form of Physiotherapy for YEARS after the age of 18. Why? There are no specialist Physiotherapists available on the NHS for us once we reach adulthood with these muscle-wasting conditions, leaving charities like the NMC to try and help as many people as possible with little funding. Those years without therapy meant my condition was left to naturally progress, if I'd of been able to access physio continuously in the transitioning years - my legs wouldn't of developed as severe of contractures like you see here. Yes, MD has no treatments or cure but things like Physiotherapy help us stay flexible and maintain what we can do for as long as possible. I travel almost 2hrs there and back every fortnight to try and remain physically stable for as long as my condition will allow. I am so incredibly grateful to live close enough to this one of a kind centre in the UK that supports adults living with Neuromuscular conditions, if I lived any further away things would be very different! Which is the case for so many 😔

#physiotherapy #neuromusculartherapy #disability #disabledbloggers #disabilityrights #disabledandproud #wheelchairlife #disabledlife #chronicillness #NMD #MD #therapy #LLC #LTC #instadaily #instacharity I don't remember the last time I was able to have a bath without Ava trying to get in or going to the loo without a fight suddenly breaking out. Closing the door doesn't work either, little fingers work their way under and the insistant "Mummy, Mummy, what you doin'?" is just as annoying when all you need is 5 minutes.

Like everything with Motherhood as irritating as moments like those are I put myself in check with a reminder that they will not always be this little, that alone makes me realise THESE are the best years. Being needed to this intensity is a phase, a phase I'll long to have back one day.

#acupofmotherhood #dailyparenting #joyfulmamas #thehappynow #runwildmychild #childhoodunplugged #practicegratitude #mumbloggeruk #pbloggersUK #pbloggers #bloggerlife #allthoseblogs #bloggersofinstagram #candidchildhood #letthembelittle #motherhood #parenting #parenthood #qotd #dailyquotes #familylife We had LOTS of fun playing "dress up" for this year's #GoOrangeDay to raise much needed awareness and money towards support and potential future treatments for over 60 types of #MuscularDystrophy.

My Story - "I was diagnosed at just 3yrs old with a form of MD, it is so rare that back in 1991 when I was diagnosed it wasn't even recognised by @musculardystrophyuk. It was my parents that worked with the charity to make sure #MultiminicoreMyopathy wasn't left behind. MDUK has been of tremendous support ever since, from providing funding for my 1st #powerchair in early childhood to give me independence, to paving the way with assistive technology such as #NonInvasiveVentilation aka NIV that has extended my life expectancy to the point I even had 2 beautiful girls when I wasn't supposed to live past childhood myself. Giving me a voice, voluntary opportunities that gave me a purpose and a way to give back. Connecting me to so many others along the way that helps me emotionally. My story is just 1 of 70,000 journeys with muscle-wasting conditions in the UK that would of been far different if it not for this INCREDIBLE charity.

Thank you #MDUK so much for changing my future" - Fi and family

#EveryDayCounts #makeadifference #muscledisease #volunteer #disability #disabledandproud #wheelchairlife #disabledlife #chronicillness #fundraising #raisinglittlepeople #parentingblogger #empowering #geneticconditions #RareDisease #donate #acupofmotherhood #dailyparenting #joyfulmamas #thehappynow #instafun #instacharity #mummyblogger #influencer Feb 1st is #GoOrange Day! To celebrate all the incredible work @musculardystrophyuk does in supporting over 70,000 people in the UK living with muscle-wasting conditions and their tireless dedication to #FastTrack groundbreaking treatments - our family had a orange themed Insta 📸 photoshoot! Here's a sneak peak.. Check back at 8pm for all the silliness in the name of charity.

Muscular Dystrophy UK holds a very special place in my heart. They were there for my family from diagnosis, helped to provide my very 1st powerchair at age 9 that opened up my world and today, I am proud as punch to be one of their Trailblazers - a group of young disabled people campaigning for a more accessible Britain.

Want to contribute to the fight of 60+ muscle-wasting conditions? I'm teaming up with my good friend (who also has MD) @my.life_kerrys.way in raising funds for the charity. Your kind donations will go towards life saving treatments and improving the quality of life of thousands!

Donate here 👇
https://www.justgiving.com/fundraising/kerrythompson79

A *HUGE* THANK YOU to everyone supporting #GoOrange Day! 
#MuscularDystrophy #muscledisease #MDUK #EveryDayCounts #dailyparenting #joyfulmamas #thehappynow #runwildmychild #childhoodunplugged #compassion #pbloggersUK #pbloggers #bloggerlife #fundraising
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