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Saturday, 19 July 2014

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.

Friday, 6 June 2014

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'.

Friday, 30 May 2014

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.

Friday, 11 April 2014

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

Friday, 28 March 2014

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.

Saturday, 15 March 2014

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.

Thursday, 6 March 2014

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!