vestibular conditons Archives

In Chronic Illness

Life in a Spin

September 18, 2014 No Comments

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)

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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In Chronic Illness

I’m supporting Balance Awareness Week! Will you?

August 22, 2014 No Comments

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.

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!

In Chronic Illness

To Go or Not To Go…

March 19, 2013 No Comments

Many of us living with chronic illnesses know that often it can rob us of our dreams and aspirations – often assuming that what we used to dream of achieving is no longer within our grasp. However, this is often not the truth – what may be out of our grasp is the most conventional route of achieving a particular dream; but often when living with a chronic illness, we need to find another route to be able to achieve our dream.

A dream of mine has always been to visit the beautiful country of Italy. In fact it is on my ‘Bucket List’ that we have complied at my social group which I attend. However, due to my problems with dizziness and vertigo, particularly affected by high ceilings flying there would not be a good option for me as the majority of airports are very large and have high ceilings – using this transport option would mean that I would be extremely unwell even before getting to the desired destination!

Airports - large and high. My idea of a nightmare! — Airports – large and high. My idea of a nightmare!

Another option would be travelling by a coach; which is one option in which my Mother and I were considering. However, this was quickly dismissed after a recent trip to the cinema in which I was left in bad pain within my legs due to the cramped conditions, and therefore thought that travelling via coach for many hours would most likely result in severe pain.

Coaches don't offer a lot of leg room - and for me would leave me in pain — Coaches don’t offer a lot of leg room – and for me would leave me in pain

Therefore, the only option left to me is a cruise. My parents went on one a couple of years ago and loved it – really could not recommend it enough. Although it is only really my last option left to be able to visit Italy; there are however a lot to think about. Such as the constant dizziness and balance problems. Would going on a cruise possibly increase the severity of the dizziness, vertigo and balance issues. People with vestibular disorders often have super sensitive balance – and although cruises have stabilisers and ‘healthy’ people report not feeling the motion of the cruise ship; a person with a vestibular however may feel the motion and be affected because of it. On the other hand, my balance and dizziness are a result of a neurological disorder and therefore it is interesting to consider whether I would be affected by a cruise in the same way a person with a vestibular disorder would.

A Cruise - good or bad thing with a condition like mine? — A Cruise – good or bad thing with a condition like mine?

There are a lot of advantages of cruising for a person with a chronic illness; which really do appeal to me:

Cruise liners and the companies running them are very happy to accommodate for those with disabilities and chronic illnesses – if you tell them in advance what you need then they will happy to accommodate your specific requirements. Or if they cannot themselves they will signpost you to places where you will be able to rent certain mobility aids, etc
If like me, you are unable to determine when you will become unwell; symptoms appear with no warning then on a cruise you can simply head back to the cabin to have rest or a nap. If you were on a conventional holiday and out on an excursion you would not be able to do so
With mobility problems like myself; cruise ships have plenty of elevators that you can use, and if you suddenly get tired, there are plenty of lounges, bars, restaurants or seats that you can plop yourself down on to take a break
When the cruise liner has reached a particular destination and has docked, if you are not up to go sight-seeing then you do not have to – you can just stay on the ship and relax!
Plenty to do and lots going on! I personally like to be entertained and if I am up to it like lots to do – and cruises offer that. Amenities often include theatres, cinema, spas, swimming pools, ice rinks, and lots more!

I am yet undecided whether I will eventually go on a cruise; there are many factors to consider, and my health being the biggest factor to consider. Would a cruise be a good fit for a condition like mine? One thing though, I would love something to really look forward to and be excited about – my future currently offers me more hospital appointments and the same old routine!

What are your thoughts? Do you suffer with a chronic illness and like to travel? What, in your opinion are the best types of holidays for those with chronic illness? Any more advantages of a cruise? Its disadvantages?

Please leave comments – would love to know your thoughts as ever!