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Dizziness.  Giddiness. Vertigo.  Lightheadedness.  Wooziness.  Disequilibrium.  Unsteadiness.  Faintness.

Whatever word you choose to describe it, dizziness is defined as “having or involving a sensation of spinning around and losing one’s balance.”

It is also a symptom that I have lived with since early childhood.  The reasons for the dizziness is as a result of my neurological condition; a long-standing brain stem lesion.  Although we know the cause of the dizziness, we are unsure of the reason why the dizziness and vertigo occurs, and what it worse we have no way to treat or cure this very life-limiting symptom.  In the past I have tried various medications as well as undertaking vestibular rehabilitation exercises but unfortunately nothing has worked in even decreasing the severity of the moving sensations that I have to live with twenty-four seven every day.

Dizziness is not just an unpleasant symptom; it is also one which is life-limiting (Click to Tweet)

Dizziness can send you into a spin
Dizziness can send you into a spin

This condition and the symptoms, such as the dizziness has changed me.  It has also affected every part of my life.

Dizziness has not only changed me but it also affects every part of my life (Click to Tweet)

I cannot stand without feeling my body swaying due to the balance problems that the dizziness and vertigo causes; I find it difficult to be able to leave the house on my own due to the disorientation that dizziness and vertigo can cause.  Some days that I am so dizzy and the spinning is so extreme that I am unable to get out of bed.

Through this whole experience and after living with dizziness for so long, I have come to learn how little dizziness and vertigo is understood within the medical community.  According to some online resources, dizziness is one of the most difficult complaints to assess because it is a subjective sensation with many differing descriptions of the experience.  Furthermore, doctors are also unable to directly and objectively measure dizziness.  And mirroring my own experiences, patients complaining of dizziness and vertigo will see a number of different specialists, as dizziness and vertigo can be caused by a multitude of different pathophysiological processes, thereby making diagnosis particularly difficult.

As a result of it not being understood within the medical community, it is therefore also not understood within the wider community.  That is why awareness events are so important.  Now, there may not be an awareness week for my particular diagnosis, but the American organisation VEDA (Vestibular Disorders Association) is this week helping to raise awareness of Balance or Vestibular Disorders this week (September 15th – September 21st) of which dizziness and vertigo is a classic symptom.

The vestibular system includes the parts of the inner ear and brain that process the sensory information involved with controlling balance and eye movements. If disease or injury damages these processing areas, vestibular disorders can result. – VEDA website

Vestibular disorders can also include the following symptoms:

  • Visual-spatial problems
  • Clumsiness
  • Fatigue
  • Holding head in a tilted position
  • Difficulty in concentrating
  • Tendency to touch or hold onto something when standing
  • Poor hand-eye coordination

See this informative infographic from VEDA to find out more about these disorders.

Infographic_final

There may not be an awareness week for my neurological condition anytime soon but I am happy to support an awareness event to raise awareness of a symptom that greatly affects my life.  I may not live with a vestibular condition myself, but after living with dizziness and vertigo for so long, I can understand and empathise with those who do.  So, I will help VEDA and stand in solidarity with everyone affected by dizziness, vertigo and balance conditions and do so whilst wearing my ‘Dizzy not Drunk’ t-shirt!!

 

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Every year in September VEDA (Vestibular Disorders Association) aims to raise awareness for vestibular conditions.  They also aim  raise money for research into these disorders which causes dizziness and affects the balance system.

According to the VEDA website:

The goal of Balance Awareness Week is to reduce the time it takes to diagnose a vestibular disorder. We help patients recognize the symptoms of a vestibular disorder and urge them to seek help from a professional specialist. We also encourage family and friends to learn more about vestibular disorders so they can support their loved ones’ who are suffering from dizziness and other debilitating symptoms.

Although, I do not suffer from a vestibular disorder myself; dizziness and disturbances in my balance is a large part of my life.  Due to a neurological condition, I am constantly dizzy as well as frequent episodes of vertigo and as a result my balance is affected with these symptoms affecting my gait (the way I walk) and causing falls.  Therefore, I understand and have experienced the loneliness, frustration and isolation these symptoms can cause and as a result I am supporting the ‘Balance Awareness Week’ (September 15th – September 21st 2014).

One way in which I have already shown my support for VEDA and raise awareness for Balance disorders is by purchasing a t-shirt designed by my great friend, Marissa.  Marissa has been a fantastic advocate for everyone affected by dizziness and vestibular conditions.  Marissa not only blogs about her own battle with dizziness and balance issues at her site Abledis.com, but she also founded ‘The Spin Sisters’ a podcast that discusses life with chronic dizziness and coping with a chronic condition.  To find out more about why Marissa is raising money and helping VEDA, then you can read so by viewing her personal campaign page here.

balanceawarnesstshirts

There are two t-shirts available in the Balance Awareness storefront – one funky and lighthearted design that features the phrase ‘Dizzy not Drunk’.  This is because many people who suffers with vestibular disorders often are accused of being drunk because it can result in an unsteady gait when walking which is also a sign of intoxication.  The other design is a simple and plain design with the hashtag ‘Cure Dizziness’ and ‘Balance Awareness Week 2014’ underneath.  The ‘Cure Dizziness’ design is available in adult (men and women) and youth sizes.

There is only six days left on the t-shirt campaign, so please if you can then purchase your own to show support for everyone affected by dizziness and balance disorders.  These disorders can affect anyone at anytime and is something that could affect at you at some point.  As Marissa says:

Rocking an awareness t-shirt means we all get to stand in solidarity with those suffering in silence… PLUS you’re getting a cool looking t-shirt!

 

If you aren’t able to get your own t-shirt then please  help spread the word and raise awareness about such conditions on social media and help all those who are suffering with such conditions in silence.  Awareness is a catalyst for a change so help and be a change agent!

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I would just like to wish all the reader of my blog – both new and old a very Merry Christmas and hope it brings everything you wish for and much more.  I would also like to wish everyone the most wonderful New Year and hoping 2014 is an amazing year for everyone.

But most of all I hope everyone has a happy and healthy Christmas and New Year celebrations.

Take care

Rhiann xx

 

 

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