Disabilities Don't Define You - by Paisley Hansen

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

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International #RareDiseaseDay!

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

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Guest Post: Fibromyalgia Awareness Day!

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.

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EDS Awareness Month - Week 1 - The Types of EDS

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! 

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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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