HideAndSeek Disabilities

TOP 5: Meant well phrases we're 'sick' of hearing

2014-07-19T07:46:00.000-07:00

People with invisible conditions are often told things that are meant well but are actually a bit annoying. I don't mean this to sound ungrateful as I know people don't mean to offend and do wish others well but sometimes it wouldn't do any harm to think before they speak. So here is our top 5 list of phrases that we think people should think about before saying.

1. "But you don't look sick"

Too many of us hear this phrase too often, it's common to hear this from people when your disability is invisible. Just because visibly some people appear physically 'fine', whatever fine is, doesn't mean that they aren't disabled. Many people that suffer with invisible conditions have symptoms such as fatigue and chronic pain which is often overlooked by others simply because they can't see it.

2. "I found a cure online..."

There is always that one friend or relative that, whilst is very thoughtful and means well, often smothers you and is quite overwhelming. Whilst we appreciate that people take an interest and try to help out, far too often we hear of online rumours of cures and treatments. Although every now and again it may be an interesting read when you are bombarded with what is often false hope it can get a bit much.

3. "But you were fine yesterday"

People often say this as they don't understand that your abilities and symptoms may fluctuate day to day. Whilst yesterday you may have been a bit better (not necessarily 'fine') today might be one of your really bad days and so you have to cancel your plans. Unfortunately, some friends find this difficult to understand, especially when a bad day coincides with your coffee shop catch up.

4. "I feel so sorry for you"

Please don't. The last thing that people coping with illnesses or disabilities want is anyone's pity. All they want is to be treated 'normally'. I understand that is sometimes difficult to know what to say to someone when they're having a bad time, but instead of offering pity just talk to them normally and they'll open up to you if they want.

5. "I'm sure you'll be fine"

Again. This seems to be a reoccurring theme but what actually is 'fine'? Likewise, we also hope to feel a bit better tomorrow or in the upcoming days and we appreciate that you wish us well but I think being simply 'fine' is a bit too wishful, but one can hope.

TOP 5: Functional Father's Day Gifts 2014

2014-06-06T06:29:00.000-07:00

To kick off our new series of 'Top 5' blog posts we thought we'd start with our top 5 (well 7, we couldn't pick just five) functional father's day gift ideas! Father's day is on June 15 this year in the UK so we thought we'd post this pronto so you have plenty of time to get your gifts!

(1) The Slanket

Many of you may have already heard of this comfy blanket with sleeves and we think its an ideal gift for dad. You can even now get one with a pocket for your TV remote control and a pouch for your feet! Order them here at the Slanket website.

(2) Audible Books

Next up on our Top 5 (well, 7) is audible, a subscription to this vast audio book library will allow your Dad to choose from a collection of thousands of audible books of all genres. So he's bound to find a lot of good reads to listen to!

(3) Grippy

At number 3, we have Grippy, this nifty little gadget is a great way to keep all your essentials together in one place. So no more searching around for lost keys or delving deep into your pockets scrambling together loose change. A perfect gift for Dad!

(4) The Blue Badge Company

The Blue Badge Company specialise in stylish, quality and unique blue badge holder designs. They have a great range to choose from but here above is our favourite. Make sure you check out their website to see the other designs on offer.

(5) Sturdy Slippers

Now you may think slippers are a pretty bog standard gift for Dad but these Moccasin slippers are really sturdy and offer great support to the feet. If you head over to M&S there's a whole range to choose from why not have a peak.

(6) Beer Fridge

At number 6 we have the beer fridge, every man's dream! There are a range of sizes and designs on offer across the market but a few of our affordable faves can be found at Argos. It's a great way to avoid nagging drink requests whilst he's busy watching the world cup tucked up in his slanket.

(7) Bulldog's Original Moisturiser

Finally our number 7, father's day gift idea is Bulldog's Original Moisturiser. This simple grooming product has received fantastic reviews and provides great 'skincare for men'.

Disability Conferences Around the World in 2014

2014-05-30T04:06:00.000-07:00

This week's blog post is dedicated to a few of the upcoming disability conferences across the world...

Below is more information about some of the disability conferences that may be happening near you!

This information was courtesy of Home Healthcare Adaptations, for more information about their services please see their website.

Disabilities Don't Define You - by Paisley Hansen

2014-04-11T09:29:00.000-07:00

Disabilities Don’t Define You

Facing life with a disability can be a challenge. Uneducated or dismissive people may discount you as a member of society, or you may feel infantilized or marginalized by well-meaning family or friends. However, you do not have to allow your disability to define you. You are a person with a disability, not a disabled person. While you may never be able to change how some people view you, you can change how you view yourself. Here are some positive ideals you should embrace to keep your disability in a healthy perspective.

Focus on Strengths

Albert Einstein once said that a fish will go its entire life thinking it is stupid if you judge it on its ability to climb a tree. This is true of people, as well. You cannot go through life focusing on areas of weakness. Find your strengths and use them to your advantage. If you are living with a visual impairment, you may decide to pursue music. For those with speech issues, writing may be a good fit. Focus on what you can do, not what is difficult.

Overcome Obstacles

Confidence is built by overcoming challenges, so challenge yourself! If you have always wanted to perform on stage, finish a 5k, or travel to a foreign country, find a way to make it happen. You can break your goal down into smaller, easier-to-obtain goals to boost your confidence. Once you meet some of your goals, no matter how small, you will be able to overcome larger and larger obstacles as your confidence and belief in yourself soars.

- Photo taken from Flickr

Demand Independence

For some people with disabilities, receiving help from a caregiver or family member is essential. However, this does not mean you should allow yourself to be treated like a child. You can and should gently demand that your boundaries be respected if anyone attempts to provide help you don't want or need. This will help you feel independent and empowered, despite your disability. For example, if you are hearing impaired, there is no reason for well-meaning family and friends to take notes for you at a college lecture. You can rely on hearing aids, sign language, your professor's outline or speech-to-text software to handle your studies independently. If you are in a wheelchair and still want to drive, get a wheelchair van. There are many ways you can keep your independence.

Find Your Inspiration

Inspiration can come from many different sources, such as religion or celebrities. Many famous people have overcome disabilities to achieve their goals and make their dreams come true. For example, over a dozen previous presidents of the United States have had disabilities, including hearing impairments, learning disabilities, epilepsy and post-polio syndrome. None of these men let their challenges get in their way. If you are looking for a motivational quote to tape to your mirror, the following by deafblind author and activist Helen Keller is quite apt: "Although the world is full of suffering, it is full also of the overcoming of it."

Love Yourself

It is often said that you cannot love someone else until you love yourself. However, some people with disabilities may have trouble finding worth and value inside themselves. The media loves to portray anyone who is less than 'perfect' as the butt of jokes and unloveable. In reality, everyone is worthy of love. Make a list of your best qualities and read it every day. Cultivate your relationship with yourself and show yourself love by affirming your own worth and value every day.

Living with a disability cannot stop you from overcoming obstacles, being independent and achieving your goals. You are not your disability, and there is no reason to allow it to define you as a person. Changing your outlook on life with a disability is imperative to setting aside bitterness and forging forward with a renewed sense of purpose and accomplishment.

Written by Paisley Hansen

#nomakeupselfies for Cancer Research UK

2014-03-28T10:08:00.000-07:00

In six days this UK born viral craze of #nomakeupselfies (women posting pictures of themselves with no make up) raised a staggering 8 million pounds for Cancer Research UK.

The idea behind this is that women post their #nomakeupselfies and men their #makeupselfies on social networking sites along with a caption saying that they donated to the charity by texting in which automatically donates £3 and then nominating their friends to do the same. The success of this trend will enable the charity to carry out 10 more clinical trials.

Viral sensations like this are great examples of not only the power of people on the internet but also the good spirit and kindhearted community that the online community can be.

Cancer Research, who did not initiate this campaign has said that the craze has led to a dramatic increase in the amount of donations that they receive.

Below are some examples of UK celebrities that got involved in this cause!

Left to right: Michelle Heaton, Holly Willoughby, Kym Marsh

Photograph taken from The Guardian

If you would like to donate then please give what you can by visiting the Cancer Research UK Website.

The Great Daffodil Appeal - Marie Curie Cancer Care

2014-03-15T04:57:00.001-07:00

Having just lost a close family member to a battle with cancer, i'd like to dedicate this week's post to the support and care that the Marie Curie nurses provide for those with terminal illnesses. The nurses and staff at Marie Curie have continually helped us as a family throughout this difficult time and for them to continue to help many more families in this situation they have launched 'The Great Daffodil Appeal' this March.

The Great Daffodil Appeal

Where will the money go?

“We need to raise £10,000 every hour of every day to carry on our work…

Marie Curie has 2,000 nurses in the UK and last year they worked for 1,300,000 hours caring for terminally ill patients, including half of all cancer patients who die at home.

We also have nine hospices and are the biggest provider of hospice beds outside the NHS. In total, Marie Curie spends over £93 million a year on its charitable activities of providing care as well as on research and development. The figure is overwhelming, but so is the comfort that the money can provide.” – Marie Curie

Throughout the whole of March, Marie Curie are hosting the Great Daffodil Appeal whereby they are asking people to make a small donation to this cause and wear a daffodil to show their support. Since I've been wearing mine, I've started noticing so many other people out and about, on the high street and in the shops wearing theirs and showing their support.

So if you see a collector with a bucket this March, please consider throwing some of your spare change in and start sporting the daffodil! So that you can help the nurses care for more people with terminal illnesses.

Thank you for your support. x

If you would like to make an online donation you can do so via the Marie Curie website.

International #RareDiseaseDay!

2014-03-06T07:55:00.000-08:00

The 28th February 2014 was international Rare Disease Day with over 70 countries across the world hosting events and activities to help raise awareness about rare and invisible diseases. So I thought i'd share some of the events with you! For a full list of events that went on and the success that they had please visit the Rare Disease Day Website.

Official Video

In the UK a variety of events took place on the day including a Coffee morning in London, organised by Advocacy for Neuroacanthocytosis; an information day at Birmingham's Queen Elizabeth hospital and BABPA Charity Dinner in Leamington Spa, organised by NMC Midlands.

Meanwhile in Australia a Cinema Fundraiser Night happened in Tuggeranong hosted by International Society for Mannosidosis and Related Disease. There was also a picnic event in Melbourne and a Cocktail night in Bathurst, all to raise money and awareness for rare diseases!

As previously said, various events happened across the world including Jazz nights in Italy's capital city of Rome and High School assemblys in New Jersey, USA. So please do check out the website for a full list of all of the activities. BUT it doesn't end there. There are also more events to happen in the coming weeks and months in association with Rare Disease Day 2014 so make sure you keep an eye out for an upcoming event near you and keep spreading the word about rare diseases!

#RareDiseaseDay2014

Message from the Blogger...

2014-02-14T14:25:00.000-08:00

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!

Rare Disease Day 2014!

2014-01-31T05:21:00.000-08:00

In 4 weeks time on February 28th 2014 it is international rare disease day organised by Eurodis. In the run up to this day various events and promotional campaigns are taking place to help raise awareness about invisible conditions. To find out more about the day and to see the all the easy and simple ways that you can get involved just read the rest of this blog post and then visit their website.

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So what is Rare Disease Day?

"Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and by National Alliances and Patient Organisations at the national level.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The campaign targets primarily the general public but it is also designed for patients and patient representatives, as well as politicians, public authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, more than 1000 events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.

The political momentum resulting from the Day has also served for advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.

Even though the campaign started as a European event, it has progressively become a world event, with over 70 countries participating in 2013. We hope many more will join in 2014. Our objective is for the WHO to recognise the last day of February as the official Rare Disease Day and to raise increasing awareness for Rare Diseases worldwide." - Rare Disease Day Website

Below is a message from the Rare Disease Day Ambassador - Sean Hepburn Ferrer.

Interested in getting involved? Check out this video explaining the information pack available for download from the Rare Disease Day website.

On 28th Feb we shall feature a special blog post about the success of the day and hopefully share some of your stories about how you got involved. So please get in touch and let us know how you're planning to raise awareness!

HandiNews International

2014-01-17T07:26:00.000-08:00

This week's blog post features HandiNews International a useful website for people with all kinds of disabilities. We asked them a few questions about what HandiNews is all about so that we can share them with you!

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The Disabilities Meeting Place to Share and Help Each Other

www.handinewsinternational.com

What is HandiNews International?

HandiNews International is an online resource (website and social media) for ALL who are interested in disabilities, to share information and help each other.

How can HandiNews International help me and other disabled people?

HandiNews is a practical way for you to share your stories on our website and help each other - what you've accomplished, what you've learned, what resources you need, what services you might offer, and comment on what others have done. Everyday our Twitter platform brings you news about current disability issues, successes, and a lot more. Our tweets also tell you what's going on in our website - our viewers' latest stories, our featured news, our calendar of conferences, and links to useful resources.

What is HandiNews' aim?

HandiNews International's aim is to help us better our lives and the lives of each other, through sharing and caring, and to teach others to include and welcome us.

How can people like myself get involved with HandiNews International?

It's easy to get involved with HandiNews International. Just "follow" @HandiNews on Twitter, "friend" HandiNews International on Facebook, and bookmark our website. Then share your stories, information, resources, services, thoughts, comments and questions. We're inviting you! Help others, and help yourself!

Got an idea for a future post? Make sure you follow us on Twitter @hideandseekid, like our Facebook Page or email us - hideandseekid@hotmail.co.uk. The next post will go live on the blog on Friday 31st Jan. See you then!

Happy New Year - from HideAndSeek!

2014-01-03T04:25:00.005-08:00

Firstly, I'd like to wish you all a very happy new year and hope you've had a great start to 2014! Without trying to sound very cliché by saying 'New year, new me (blog)' I would like this year to be a new start for this blog...

I started this blog back in 2011 as a platform to reach out to those with invisible disabilities & to educate others about existing invisible conditions which most of us are unaware of.

When I was diagnosed with an incurable, inherited condition called Ehlers Danlos syndrome (I'd never heard of it either) after years of pain and numerous doctors visits, I hadn't received a correct diagnosis till the age of 16. I couldn't understand how it could take so long to be diagnosed with a condition that I was born with and why hadn't it been picked up sooner? I then realised it was because EDS is one of many invisible conditions that very little is known about.

Since starting this blog it has reached so many milestones, reaching a global audience with almost 45,000 hits and it has been inspiring for me to hear you share so many of your incredible stories and journeys about the conditions that you face in day to day life yet often get unnoticed. I hold my hands up, I've promised numerous times to upload posts far more regularly than I have (slaps wrist) but as usual I got swept up in the business everyday life, starting back at uni, working etc etc - but that's enough of my excuses.

So here is my new year's resolution, which you can help me stick too... I will start off by posting on this blog every 2 weeks, on the 1st and 3rd Friday of each month starting today before hopefully starting to upload regular weekly posts. Baby steps.

The content I upload will not be all doom and gloom, instead I want to share inspiring stories, useful websites, video links etc about all kinds of invisible conditions. But to do this I need your help, for this blog to reach its full potential I want to try and reach out to as many sufferers of invisible conditions as possible to offer support by sharing helpful info with each other and act as an extra online support network.

So could you please share this post with as many people as possible as you never know who it might reach and help. Please can you email in any info, stories, video links, organisation names, anything at all which you think may be of use to others to hideandseekid@hotmail.co.uk so that I can feature them in future posts.

Also let me know what kind of posts would you be interested in reading about? Let me know either via email, twitter or FB. But for now I'll stop rambling, I'll just say that I believe...

Together we can help make the invisible, visible.

Abi x

- Follow us on twitter and like our FB page

The Jolt Trust Charity

2013-09-15T12:30:00.000-07:00

If you read our inspiring guest blog posts from Emily Yates you'll be familiar with the charity organisation she mentioned called Jolt Trust. We're really interested in what this small charity offer to disabled people and what they have already achieved. So we'd like to share some more info about the Jolt Trust movement with you...

"Since 1983, the Journey of a Lifetime Trust (JoLt) has been making a positive, lasting difference to the lives of hundreds of disabled, ill, abused and neglected young people. JoLt is a small charity run on a totally voluntary basis by a group of ordinary people with families and careers. It was set up in 1983 to make a positive lasting difference to the lives of disabled, ill, neglected and abused young people.Every two years, we organise expeditions all over the world for groups of young people (from fourteen to twenty one years) with significant disadvantages. All long to travel to far-away places. JoLt makes their dreams come true." - JoLt Website

Sounds amazing right? Fancy getting involved?

Well there are many ways you could help to get involved with this charity and their work. First of all is by donating so that they can continue to offer these fantastic expeditions for the disabled youngsters in years to come. If you'd like more information about this please click here.

Or you could nominate a youngster to be considered for taking part in the 2014 expedition across Africa!

"We are busy planning our next journey for July / August 2014. We aim to travel from the heart of Africa to the Indian Ocean. We will start our travels in Zambia, before heading through Botswana, South Africa, Swaziland and arrive in Mozambique a month later. We will take in the mighty Zambezi River and Victoria Falls before entering Botswana, the gateway to the Okavango Delta. South African highlights include the world famous Kruger National Park and Blyde River Canyon. The Kingdom of Swaziland will be the location for a community project and some exciting trekking, before arriving on the beaches of Mozambique to complete our journey." - JoLt Website

For more information about how to nominate please click here!

Emily Yates: Q+A - Part 2

2013-09-08T08:34:00.000-07:00

After reading about Emily's incredible story so far we decided to ask her some questions about her involvement at London 2012 and what her plans are for the future. Here is our short Q+A session with her...

1. As a wheelchair user, how did you find the facilities and accessibility at The Games?

I thought it was incredible. Not only were the facilities great, they were so great that I honestly did not have to put in any extra effort compared to an able-bodied person. The lifts and toilets were conveniently placed; everything was lovely and flat, with vehicles to help you out if you struggled with distance. Most of all, though, there was always someone willing to help you out if you needed it. Such an inclusive, wonderful atmosphere.

2. Would you encourage a disabled person to apply to be a volunteer at The Games and why?

Absolutely, and why not? Everything you could possibly need will be available to you. You will make friends that you immediately have a bond with, as you are all volunteering for the same reasons: to have fun, and to make a difference to the success of the event and the enjoyment of the athletes. I'd even say that I had an advantage working as a disabled volunteer at the Paralympics. I felt that, a lot of the time, I was able to communicate well with athletes who had similar disabilities, and they were equally confident that I would be able to help them out. My wheelchair also fell apart during one of my shifts, and I couldn't have been in a better location for it to be mended by all the amazing technicians!

3. What is your favourite memory from working at London 2012?

There's so many! Of course, meeting Seb was incredible, as was being mentioned in his speech. What I remember most, though, is the constant buzz that surrounded London. Everyone was vibrant and happy; it made working at the Games an absolute joy.

4. What advice would you give to a disabled person that is considering applying for tickets to Rio?

Read the accessible guide I'm writing, which will hopefully tell you all you need to know about making the most of your time there!

5. Tell us a bit about your book 'An Accessible Guide to Rio' and when can we get our hands on a copy?

Right now, the guide is still in the very early stages. The aim, though, is to create a fully comprehensive guide that will help those with varying disabilities to get the most out of their time in Rio. It'll let you know where is good to visit, where you can rest your head after a busy day, and where you can go to party with ease! Of course, there will be lots of information about accessible transport and tourist attractions, too. And it won't just be suitable for those with disabilities either. The elderly and families with children in pushchairs may also benefit from it, too. If all goes to plan, we are hoping that the guide will be distributed free of charge through disability organisations and networks, so that the guide really does hit its target audience!

Emily's Twitter: @EmilyRYates

Emily Yates: 'Journey of a Lifetime' - Part 1

2013-09-01T03:10:00.000-07:00

- Emily and Seb at London 2012

- Emily and her friend Tom with

The One Show's Alex Jones

Me and my twin sister, Lucy were born 10 weeks prematurely, and later diagnosed with Cerebral Palsy, after not being able to walk for quite a while when we were young. My early memories are of constantly walking up and down the stairs at our local Children's Development Centre to try and strengthen my legs. We had a lovely childhood, and loved school. I don't remember our disability ever affecting us, how we made friends, or our outlook on life.

At 9 years old, I had an operation to improve my walking, as it was getting so bad that my knees started to knock together and my posture was worsening. I had Derotational Osteotomy where my thigh bones were cut and pinned back together. My hamstrings were also lengthened. This huge procedure took quite a while to recover from, and I lost all the muscle tone in my legs, leading me to use a wheelchair. I have no recollection of this change ever really bothering me; I was actually much more mobile with the wheelchair, and I started playing wheelchair basketball locally and at county level. I remember my wheelchair even being quite cool when I started secondary school! Again, apart from a few issues with school trips and risk assessments, my time at school was so enjoyable. I did well in my GCSEs, and decided to stay on at 6th form, with the hope of attending University.

In the summer of 2008, at the age of 16, I as given an amazing opportunity which would change my life forever. I was nominated by my school to go to southern Africa (Namibia, Lesotho and South Africa) with the JoLt Charity, an incredible organisation that takes disabled or disadvantaged young people on a literal 'Journey of a Lifetime'. Here, I met people with similar life experiences and similar ambitions. Together, we did things that we'd never imagined would have been possible. We rode elephants, went cage diving with sharks, and climbed some of the highest sand dunes there are! I immediately got the travel bug, along with 30 life-long friends.

After JoLt, I was determined to travel some more. After my A Levels, I went to the Sinai Desert with the Yorkshire Schools Exploring Society, and was the first wheelchair user they'd ever taken on a trip. I was also the first wheelchair user to ever cross the desert on camel! Whilst in the area, we also completed our PADI Open Water Scuba Diving course - a real challenge for me - but it was so worth it.

After Sinai, I moved to London after being accepted to study English at Queen Mary, University of London. I totally fell in love with London, and all the opportunities it has to offer, and I adored student life! It was half-way through this fresher year that I was accepted to move to Melbourne, Australia for a year studying abroad. Going to the other side of the world was quite a scary thought, but I was ready for the challenge. In Australia, I snorkelled at the Great Barrier Reef, volunteered at a juvenile prison, and met another wheelchair user, Alex, who was to become my travelling partner for the year. Of course, I managed to fit a little study time in, too... Urging myself to grab such a once-in-a-lifetime opportunity like moving to Australia is something that I'm so proud of. It would have been so much easier to sit back and stay in my comfort zone, but taking that risk was the best thing I've ever done.

I returned to London in July 2012, after heading from Australia to America to intern at the United Nations in New York. It was at this time that I received a call from the London 2012 team, saying that my application to be a Games Maker at the Paralympic Games had been successful. The day before my first shift, I got another call, asking me if I would talk at a press conference the following morning. I said yes, thinking nothing else of it. But, lo and behold, I arrived that morning to be greeted by Lord Sebastian Coe - we'd be doing the conference together in front of loads of journalists! I told them all how amazing the Games had been for those with disabilities, 'lifting the cloud of limitation' on everything that they thought was previously possible.

I then worked at the Excel arena, working as a Games Maker in the warm-up team for Wheelchair Fencing. I absolutely loved it. We got the chance to take athletes out onto the field of play, and then take photos with them and their medals!

Seb then went on to use my 'cloud' quote in his closing ceremony speech of the Paralympics. My phone was going mad with calls and texts - I couldn't believe it! My friend Tom and I had previously spoken about how great it would be to write an accessible travel guide for the next set of Games at Rio 2016, and this was suddenly our opportunity. I quickly got in touch with Seb and the team at the British Paralympic Association, both of whom have supported my ambition to create the guide right from the start. I am now writing the guide in association with Dorling Kindersley and Rough Guides. We are currently trying to raise sponsorship so that we can distribute the guide free of charge to those who will benefit the most from it. I'm also about to start a Master’s degree in Disability Studies at the University of Leeds, and I'm hoping that my dream to help others with disabilities to embrace the idea of travelling the world really makes a difference!

I am so fortunate to have been given so many wonderful opportunities, and each one has led to another one. To anyone reading this, the only advice I can give is to urge you to say 'yes' to any exciting offer that is made to you; you never, ever know where it might lead!

- Twitter: @EmilyRYates

Next week's blog post will feature a short Q+A with Emily about her experiences at London 2012 and her plans for the future - so stay tuned!

INVISIBLE DISABILITIES #1: Fibromyalgia

2013-08-25T12:00:00.000-07:00

As part of our attempt to raise awareness about all invisible conditions we're starting off with Fibromyalgia...

So what is Fibromyalgia?

Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.

The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”.

The name fibromyalgia is made up from “fibro” for fibrous tissues such as tendons and ligaments; “my” indicating muscles; and “algia” meaning pain. - taken from Fibromyalgia Association UK

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A video created to help raise awareness about Fibromyalgia:

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Mission Statement: The National Fibromyalgia & Chronic Pain Association unites patients, policy makers, and medical and scientific communities to transform lives through visionary support, advocacy, research and education to develop affordable and accessible treatments and cures for fibromyalgia and chronic pain illnesses. - NFMCPA

Local Support Groups in USA and across Other Continents.

If you're interested in helping to raise awareness about Fibromyalgia then click this link to find out how you can get involved in awareness day events near you, wherever you are in the world! If you're situated in the USA click here to find events in your State!

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Finally, if you'd like to know more information about Fibromyalgia please see our previous blog post about Fibromyalgia Awareness Day 2013!

INVISIBLE DISABILITIES: Branching Out!

2013-08-18T04:40:00.003-07:00

We're aware that a lot of our content has been about invisible conditions that we're most familiar with, that's why we want to branch out and not only educate others but also educate ourselves about the invisible conditions that we know little about!

To do this, we shall feature weekly content about all kinds of conditions with a new post being uploaded every Sunday. Some weeks we shall focus on an individual condition including content ranging from videos to personals stories, facts to useful links whereas in others we shall feature collaborations and events that are happening across the world to help raise awareness!

We really want to branch out and reach as many people across the world as possible educating them about all kinds of invisible conditions and we'd love you to share your stories to help educate us.

Over the next year we shall feature posts about as many invisible disabilities as possible from the picture below. Starting with next weeks post on Fibromyalgia. If you would like to contribute your useful links, personal stories or anything you think others should know about the condition please email it to: hideandseekid@hotmail.co.uk

UPDATE: Blog Relaunch!

2013-08-10T11:11:00.004-07:00

Hello All...

This is just a quick message to say sorry that we've been a bit quiet the last few weeks on all of our social platforms we're currently working on the re-branding and relaunch of our blog for you guys (as you can see by our new blog layout, what do you think?)

We're working on some exciting projects and collaborating with some great people which we're excited to share with you all soon.

We'll keep you updated about what we're up to on all of our platforms so make sure you're following us on Twitter and have liked our Facebook page.

If you have anything you'd like to include in our future weekly blog posts or just want to give us some feedback on our new look then we'd love to hear from you. Just email us at hideandseekid@hotmail.co.uk.

P.S. We're new to all this blog design stuff so we'd love to know what you think of it by emailing us at hideandseekid@hotmail.co.uk, and don't worry we do know that a few bits still need tweaking!

EDS Awareness Month - Week 3 - Awareness Videos

2013-05-24T07:37:00.000-07:00

As part of EDS awareness month many of you have been doing your bit by creating videos and putting them up online to share with others. There have been so many contributions so it has been really hard shortlisting some of our favourites to share with you but here they are!

British TV Soap Opera - Coronation Street:

Cherylee Houston who plays Izzie Armstrong in Coronation Street suffers with EDS so when the EDS UK had chance to go and meet the cast they wasted no time in showcasing their support for the cause.

Your Videos:

This is a song called 'The Cure' which was created by a young girl called Kitty Richardson about her struggle with EDS.

This is a video created by Heather or 'Zebra Wheels' as she's known in the community about her life with EDS.

Our Video Contribution:

Here is a short film that we created to help raise awareness about invisible conditions!

Here is how Natalia Carrasco is trying to raise awareness, she's creating daily EDS facts and posting them online for us all to share. Please see our previous blog post for more facts:

EDS Awareness Month - Week 2 - EDS Symptoms

2013-05-17T10:33:00.002-07:00

This week's post is dedicated to some of the main symptoms that people with EDS suffer with.

Hypermobile joints

People with EDS typically have loose joints, which means the limbs bend more than usual. This can cause floppy joints in infancy, and some affected children take longer to sit, stand and walk.

Hypermobility EDS is the most common form. The joints can sometimes be very unstable and may dislocate easily.

In other forms of EDS (such as kyphoscoliotic and arthrochalasia EDS), the looseness of the joints tends to be more disabling and dislocations may happen frequently. Joint instability may occasionally lead to osteoarthritis, but this is uncommon and occurs mostly in adults.

Abnormal skin

In all forms of EDS the skin is stretchier than normal. It easily pulls away from the body and springs back once released (this is best tested at the neck, elbows or knees).

Bruising of the skin is common in most forms of EDS because small surface blood vessels may be fragile and break easily.

In classical EDS, skin can also be extremely fragile and can split easily, especially over the forehead, knees, shins and elbows. The scars can be wide and papery.

In the very rare dermatospraxis form of EDS, the skin is severely fragile, saggy and wrinkly. There may be obvious looseness of the facial skin.

In vascular EDS, the skin is often transparent, particularly over the chest, and the veins underneath are easily visible. People with other forms of EDS may also have slightly thinner skin than usual.

Fragile body tissues

Increased stretchiness and fragility of ligaments, tendons and joint tissues makes them prone to overstretching or even tearing (ligaments are tissues that connect bones together at a joint, and tendons connect bone to muscle). Therefore, limbs may be floppy because they are not properly supported.

In vascular EDS, certain body tissues and organs are particularly delicate. Blood vessels, bowel walls and lung linings may be easily torn, causing internal bleeding. Pregnancy in women with vascular EDS can be dangerous because the womb lining is fragile.

Information taken from the NHS website.

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Jodie is only 19 years old and has Ehlers-Danlos Syndrome, Type 3 Hypermobility. However she wasn't diagnosed until she was 16 after numerous long stays in hospitals at Newcastle and London and multiple major operations. Life is not easy for Jodie or her family yet she still wishes to raise awareness for EDS as it is such a rare, cruel and debilitating disease that has seriously affected her in so many different ways. Jodie has been through so much but faces everything with a belief that she can make a difference and she is the epitome of courage in the face of adversity.

Ehlers-Danlos Syndrome (EDS) has drastically affected Jodie's life. Despite all that she has and continues to face, Jodie is a true fighter and always has a beautiful smile! Jodie feels passionately about helping others and hopes that by sharing her story with you, this will not only help to raise awareness of EDS but will also inspire you to support The Sick Children's Trust; a charity which has been there for Jodie's family during numerous long hospital stays. Please support Jodie's Journey and help us make a difference to unwell children and their families.

Information taken from the Jodie's Journey Website.

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Here is how Natalia Carrasco is trying to raise awareness, she's creating daily EDS facts and posting them online for us all to share. Please see our previous blog post for more facts:

Guest Post: Fibromyalgia Awareness Day!

2013-05-12T03:39:00.000-07:00

Many EDS sufferers also have Fibromyalgia, this post is dedicated to helping to raise awareness about this condition as today is its National awareness day. A massive thank you to Bee Anne for collecting the information. If you'd like to find out more about Fibromyalgia or are interested to see how you can get involved please see the links at the end of the post.

A Simple Explanation of Fibromyalgia

Making Sense of a Complex Disorder,

For Those Who Don't Have It

By Adrienne Dellwo

Fibromyalgia is a complex condition that's difficult to understand, especially if you don't have a medical degree. Because it involves the brain and nervous system, fibromyalgia can have an impact on virtually every part of the body.

If you're trying to understand this condition in someone you know, it can be incredibly confusing. When a lot of people see a bizarre collection of fluctuating symptoms that don't show up in medical tests, they decide fibromyalgia must be a psychological problem. A host of scientific evidence, however, proves that it's a very real physical condition.

Digging through that scientific research doesn't help most of us, though. Terms like neurotransmitter dysregulation, nociceptors, cellular enzymes and opiate pathways aren't exactly easy to grasp.

The goal of this article is to help you understand and relate to what's going on in the body of someone with fibromyalgia, in plain terms and without medical jargon. At the end of each section, you'll find relevant medical terms with links to definitions. They'll be helpful if you want to go beyond a basic understanding, but you don't need to understand the terms to get through this article.

Understanding the Pain of Fibromyalgia

Imagine you're planning a party and expecting about 20 guests. Three or four friends told you they'd come early to help you out. But they don't show, and instead of 20 guests, you get 100. You're overwhelmed.

That's what's happening with pain signals in someone who has fibromyalgia. The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn mild pressure or even an itch into pain.

When those pain signals reach the brain, they're processed by something called serotonin. People with fibromyalgia, however, don't have enough serotonin (the friends who didn't show up to help), leaving the brain overwhelmed.

This is why people with fibromyalgia have pain in tissues that show no sign of damage. It's not imagined pain; it's misinterpreted sensation that the brain turns into actual pain.

Other substances in the patient's brain amplify a host of other signals -- essentially, "turning up the volume" of everything. That can include light, noise and odor on top of pain, and it can further overload the brain. This can lead to confusion, fear, anxiety and panic attacks.

Understanding the Ups & Downs of Fibromyalgia

Most people with a chronic illness are always sick. The effects on the body of cancer, a virus, or a degenerative disease are fairly constant. It's understandably confusing to see someone with fibromyalgia be unable to do something on Monday, yet perfectly capable of it on Wednesday.

Look at it this way: Everyone's hormones fluctuate, and even things like weight and blood pressure can rise and fall during the course of a day, week or month. All of the systems and substances in the body work that way, rising and falling in response to different situations.

Research shows conclusively that fibromyalgia involves abnormal levels of multiple hormones and other substances. Because those things all go up and down, sometimes one or more are in the normal zone and other times they're not. The more things that are out of the zone, the worse they'll feel.

Understanding Stress & Fibromyalgia

Some people think fibromyalgia patients are emotionally incapable of dealing with stress, because a stressful situation will generally make symptoms worse.

The important thing to understand is that we respond to stress both emotionally and physically. A physical response, in everyone, includes a rush of adrenaline and other hormones that help kick your body into overdrive so you can deal with what's happening.

People with fibromyalgia don't have enough of those hormones, which makes stress very hard on their bodies and can trigger symptoms.

Also, when we talk about "stress" we usually mean the emotional kind, which can come from your job, a busy schedule, or personal conflict. A lot of things actually cause physical stress, such as illness, lack of sleep, nutritional deficiencies and injuries. Physical stress can have the same effect as emotional stress.

Understanding the Fatigue of Fibromyalgia

Think of a time when you were not just tired, but really exhausted. Maybe you were up all night studying for a test. Maybe you were up multiple times to feed a baby or take care of a sick child. Maybe it was the flu or strep throat.

Imagine being exhausted like that all day while you're trying to work, take care of kids, clean the house, cook dinner, etc. For most people, one or two good night's sleep would take that feeling away.

With fibromyalgia, though, comes sleep disorders that make a good night's sleep a rarity. A person with fibromyalgia can have anywhere from one to all of the following sleep disorders:

Insomnia (difficulty getting to sleep or staying asleep)

Inability to reach or stay in a deep sleep

Sleep apnea (breathing disturbances that can wake the person repeatedly)

Restless leg syndrome (twitching, jerking limbs that make it hard to sleep)

Periodic limb movement disorder (rhythmic, involuntary muscle contractions that prevent deep sleep)

Fibromyalgia In a Nutshell

A lot of illnesses involve one part of the body, or one system. Fibromyalgia, however, involves the entire body and throws all kinds of things out of whack. As bizarre and confusing as the varied symptoms may be, they're tied to very real physical causes.

Fibromyalgia can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.

It's NOT psychological "burn out" or depression.

It's NOT laziness.

It's NOT whining or malingering.

It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and, so far, impossible to cure.

The hardest thing for patients, however, is having to live with it. Having the support and understanding of people in their lives can make it a lot easier.

For more information about Fibromyalgia and how you can help raise awareness please visit the National Fibromyalgia & Chronic Pain Association website.

EDS Awareness Month - Week 1 - The Types of EDS

2013-05-10T08:52:00.002-07:00

Our first #EDSawarenessmonth blog post is dedicated to the different types of EDS that people have. Although some are more common forms than others and many have overlapping symptoms and this is how the different types are considered and defined.

Classical - the skin is stretchy, soft, fragile and elastic. The joints are loose and flexible.

Hypermobility - the joints are noticeably loose, flexible and sometimes painful, particularly after exercise. Unlike with other types of EDS, the skin is virtually normal, except for easy bruising.

Vascular - this is the most severe type, as it means organs and blood vessels can easily burst.

Kyphoscoliotic - the spine is severely curved in childhood.

Arthrochalasia - this causes short stature, fragile skin and joints that easily dislocate.

Dermatospraxis - the skin is doughy and wrinkly, and tends to sag and fold. This type is exceptionally rare, probably affecting fewer than five patients in the UK.

Periodontal - this form resembles classical EDS, but also causes very fragile gums.

Information taken from the NHS website.

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I know what you're asking now...

How can I get involved in helping to raise awareness about EDS?

Well first of all why not visit the Ehlers Danlos Support UK website and download their Awareness Month fundraising pack for some ideas.

Or alternatively send us your EDS stories and tell us how you're raising awareness and we'll feature it in one of our future blog posts. Email: hideandseekid@hotmail.co.uk. Next weeks post shall feature Jodie's Journey.

Here is how Natalia Carrasco is doing her bit, she's creating daily EDS facts and posting them online for us all to share. Please see our previous blog post for the first five facts:

Finally, on May 12th we shall be posting a special blog post dedicated to Fibromyalgia, a condition that a lot of EDS sufferers also have, to show our support for Fibromyalgia International Awareness Day!

May is #EDS Awareness Month!

2013-05-05T08:33:00.003-07:00

As May is EDS awareness Month every friday we will post a new blog post with updates about how people from across the world are helping to raise awareness! We'll hopefully be featuring all kinds of content from poems, to personal stories, events to images....

So if you're helping to raise awareness about EDS this month please what you're doing by sending us an email at hideandseekid@hotmail.co.uk

Also, Natalia Carrasco is helping to raise awareness by posting 31 facts about EDS for the 31 days in May. We'll be sharing these in all of our blog posts throughout the month. Here are the first 5!

Don't forget to subscribe to our future posts by selecting the subscribe option on the right hand side bar, follow us on twitter and like our Facebook page!

Oh, and our blog has now had over 30,000 hits so a massive thank you to all of you for your support in helping us to raise awareness about invisible conditions!

Find Me Good Care.

2013-03-30T08:07:00.002-07:00

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!

Rare Disease Day 2013

2013-03-10T16:00:00.000-07:00

This is a post to remember the success of Rare Disease Day 2013 where over 70 countries across the world took part in a variety of ways to help raise awareness about rare diseases. This post will showcase some of the events and highlight the success of the day!

But first...

So, what actually happened?

On 28th February, thousands of people across 71 countries took part in helping to raise awareness. Support grew across the globe as this was the largest number of countries participating throughout the 6 years that it has been running. A variety of events were held ranging from conferences, to radio shows, sponsored runs to cake sales! Everyone pulled together and worked as a team. The day got great media coverage across the globe and opened up a lot of people eyes to what rare and invisible conditions exist.Click the link here to see how each and every country played their part!

Also, make sure you check out the Official Rare Disease Day 2013 video below:

If you didn't know about Rare Disease Day this year but wish you had got involved fear not as you can certainly get involved with Rare Disease Day 2014! Keep up to date on their twitter and facebook for the latest info as well as their website!

Next Week's Post will feature the UK service 'Find Me Good Care'.

Disabled Drivers - Honda Motability Scheme

2013-02-28T10:50:00.000-08:00

“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.