Message from the Blogger...

Message from the Blogger...

Dear Readers,

I've been meaning to write a post like this for a while giving you all an update about this blog and why I love writing it. As you can see by my old posts Snippet of my life - Part 1 and Snippet of my life - Part 2 (which I wrote back in 2011 around the time when I set this blog up - so please don't judge them) the part 3 update is well over due! So for that I apologise.

I guess it's taken me this long to write this because I don't usually like to upload posts about me and my life and instead would rather use this as a platform to share info that can help others. But thought considering I often ask you all to share your inspiring stories I should probably share more of mine. So here goes...

I started this blog back in 2011 at the age of 16 after being diagnosed with Ehlers Danlos Syndrome type 3. For those of you that don't know, EDS is currently an incurable hereditary condition in which the collagen in the body is too stretchy resulting in loose ligaments in the joints. This causes a great deal of pain as well as subluxations and dislocations of the joints. But for many sufferers such as myself, EDS is a physically invisible condition and so we look "normal".

I found it hard to comprehend how it could take 16 years for me to be diagnosed with a condition that I was born with and had pretty much always shown symptoms of. But finally after numerous misdiagnosis' and trips back and forth to various specialists I was relieved when I finally received the correct diagnosis.

I realised that it took this long as EDS is not only a rare condition but also an invisible one. Therefore many people with the condition, including myself appear completely fine. So, on one quiet Sunday evening back in 2011, I thought i'd set up a blog about EDS and other invisible conditions to help raise awareness, offer support to sufferers and educate others!

So here we are now - 3 years down the line. Showcasing a variety of posts from interviews, to helpful websites, video links to event pages and I've received almost 50,000 web page hits from you guys across the world, which for such a small blog about such a specific thing is crazy.

We're also on other social media including a Twitter page which has just reached over 1,000 followers.

I cannot thank you guys enough for your contributions, feedback and your interest in what I write about. This blog is going from strength to strength and I've learnt a lot along the way and there is still so much more content to come.

So in a nutshell, for me this blog is about sharing useful tips, links and helping someone else other than ourselves. There is always someone worse off. But I will try to give you more updates like this from time to 

time.

Abi x

For more info about my story, please check out my new website! 

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Find Me Good Care.

Find Me Good Care ...

Find Me Good Care is a free online resource launched at the end of last year by the Social Care Institute for Excellence (SCIE) – a national charity established to improve care across the UK.

This week's post is dedicated to Find Me Good Care, a charity that aims to help people in their struggle to find the good quality care that their family member or indeed themselves may need. The first stumbling block is often finding where to start? It's especially hard if you don't know what sort of care and support is available or what they specifically need. Find Me Good Care was established to help people in these situations and includes advice and guidance on what to look for, how to pay, what you options are etc, as well as a local directory service where users can provide feedback.

The user friendly website www.findmegoodcare.co.uk can be tailored to individual needs; users can type in their postcode, specify what type of care they are looking for, and the results will return local services and council contacts. There is also lots of useful information for specific care needs.

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Ann Macfarlane OBE, leading Disability Rights and Equalities Consultant: “The main issue with finding and paying for care is that regardless of how much or how little funding you have available, you need good information and advice on spending it wisely. It’s taken me a long time to work out how the system works, which is why something like Find Me Good Care is really helpful for people. Many newly disabled people aren’t as aware of what their options are, and social care is just one of the systems that a person who requires support might need to understand.

Andrea Sutcliffe, Chief Executive of SCIE: “We know that the care system can be confusing and our research has confirmed that most people are unaware of their options - that’s why we’ve created this service. We have brought together comprehensive advice and guidance to help people take those all-important first steps in navigating the care and support system. 

Oh and finally, hope you all have a great Easter and stay tuned for next week's Sunday post!

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Disabled Drivers - Honda Motability Scheme

“Over 500,000 people currently lease a car through the Motability scheme. It enables you to turn your government-funded mobility allowance into a brand new Honda.” - Honda UK Website

Many disabled people face daily struggles and burdens with what lots of people class as everyday ordinary life. One of those struggles may be transportation. Those with either physical disabilities or invisible disabilities may need assistance or help with transport whilst maintaining their independence. This is where the Honda’s Motability scheme comes into play, offering people accommodating alternatives and alterations to their travel. There are a variety of adaptations that are available to assist all kinds of disabilities so visit the Honda site to find out more about Motability cars.

On a personal level, I know a few disabled people that make good use of the Motability scheme and what support it has to offer disabled drivers. For example, many disabled drivers may struggle with actually getting in to the car due to mobility reasons, similarly the operating of a standard vehicle may be difficult for them. As well, they may need some storage for extra equipment such as a wheelchair or crutches.

Many types of adaptations are available through Motability to make the driving and travelling experience as comfortable as possible for the disabled driver or passenger.  Generally, these adaptations fall under the three categories stated below.

Benefits of the Motability Scheme:

1.       Driving adaptations - Various controls can be installed to help improve the driving experience.  They make transportation easier for someone that may not have otherwise been able to drive independently. They vary from simple attachments which can be bolted onto your car to replacing all existing driving controls, with a system individually designed for you and include pedal modifications and steering aids.

2.       Stowage adaptations - These allow the disabled person to easily stow their wheelchair or scooter in the car and usually come in the form of either a hoist or rooftop storage.

3.       Access adaptations - These adaptations can be made to aid those that need help getting in and out of the car and range from a permanent swivel seat to an electronic person hoist. However, it is important to have an assessment for these first in order to ensure the motor best suits your needs.

Are you eligible?

If you’re interested and wondering whether you’re eligible for the scheme then check the Motability section of the Honda UK website for more information about what forms of benefits you receive to see if you qualify. Or visit your local Honda dealership as at least one trained Motability specialist is stationed at each dealership to help you and provide advice on which car suits you best.

In association with Honda.

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