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Another Awareness Week! Balance Awareness Week (September 16-22, 2012)

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Yes, directly after the Invisible Illness Awareness Week, another awareness has popped its head to inform and to raise awareness for those who may not know anything about it or the challenges that it can present for the sufferer.

And what is this new awareness event you wonder?  Well, it’s now officially Balance Awareness Week hosted by the folks at VEDA an organisation that provides support and information for those living with a vestibular condition.  Some of you may be wondering that the term vestibular means – and to simply explain it is a word which refers to the inner-ear balance disorder.

In order to maintain great balance we need to be able to rely on the information from our brain, eyes, inner-ear and muscular-skeletal system.  However, when one of these becomes damaged through injury or a virus then our balance system can become impaired leading to symptoms such:

  • Dizziness (feeling of disequilibrium; or unsteadiness; imbalance)
  • Vertigo (spinning sensation)
  • Tinnitus (ringing or buzzing in the ears)
  • Hearing loss
  • Problems with vision
  • Nausea and Vomiting
  • Fatigue
  • and many more!

Just as those from last week’s event, vestibular conditions are an invisible chronic illness as the symptoms nor its effects cannot be seen by an observer which lead many to underestimate or completely ignore the severity or the impact of the sufferer.  And as a person who lives with dizziness and vertigo every day, believe when I say that it is not a walk in the park and its effects are very real and can interfere with the ability to perform daily activities and tasks such as bathing or dressing.  Many people didn’t believe that I was suffering from dizziness or that I was overestimating the severity of it – and that is why this campaign is so important to teach people about the effects that vestibular and balance problems can have.  They are very real and sometimes can be mistaken for being under the influence of alcohol – so is an issue that people need to be addressed on especially as there have been cases of those with vestibular disorders being arrested on the suspicion for driving whilst under the influence of alcohol.  Another great example of why we shouldn’t judge books by their covers – we don’t know the true facts.

To learn more about the Vestibular system, you can read the VEDA pamphlet on the ’10 Things You Didn’t Know About the Balance (Vestibular) System’

And to find more about Vestibular Disorders, here is the VEDA Factsheet of Facts, Figures and Trivia

To find out more about vestibular disorder and the work of VEDA then please visit their website: http://vestibular.org/

And to learn more about the VEDA campaign of Balance Awareness Week and how you can help please visit: http://vestibular.org/BAW

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In Chronic Illness

My Inspiration…

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Over at WEGO Health this month is ‘Health Activist Inspiration Month’.  The purpose of this month is to celebrate what drives health activists to empower themselves and others as well as the inspiration behind what makes them carry on the important work.  As part of the celebrations, I have decided to share the inspiration behind the blog and what inspires me personally.

My inspiration comes from the loneliness and isolation that I felt after my diagnosis of a long-standing brain stem lesion and spastic paraparesis.  Like most other people, I turned to the internet – searching various search engines for any information about the condition, and organisations or blogs where I could connect with others exhibiting the same condition.  Imagine my disappointment when I found that there was no such information or support networks out there, adding to the loneliness and isolation I already felt after a long battle with trying to get diagnosed, as well as how different I felt from others my age due to the symptoms I was experiencing.

After inspiration from a close friend and fellow blogger, I decided to start my own blog and so it was born in January 2012 so that no one else who may in the future be diagnosed with the same condition will go through what I did – feeling as if they were the only one going through this and that no one else understands what it is like!!

I have now begun supporting the ‘Invisible Illness Awareness Week Project’ and the inspiration behind supporting the cause as my neurological condition qualifies as an invisible illness – by looking at me you would never though that there was anything wrong.  But that isn’t the case as my days are filled with constant dizziness, frequent attacks of vertigo and visual disturbances, as well as the stiffness and weakness in the lower extremities.  Many people underestimate the effects of invisible illness or dismiss them entirely, claiming that the person is lazy or “that it’s all in their head” and so on.

It is due to these common misconceptions that inspired me to write about my life and journey with this condition – as many doctors for years blamed my symptoms on anxiety.  In want to be able to express the truth about invisible illnesses as well as dispelling those myths that many people hold.

And now I find that although non-one else I have ‘met’ has the same condition or disability that I have, nevertheless I have come across many other patients and bloggers out there that I have been able to connect with and gain understanding and friendship.  And the inspiration that keeps me going?  Receiving messages of support during a bad day can mean the world…

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In Chronic Illness

Images of Hope for Invisible Illness Awareness Week

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As you may already be aware September 10 – September 16 is ‘Invisible Illness Awareness Week’ and as part of this fantastic campaign they are asking for people battling chronic invisible illness to share pictures that brings hope.  This can be anything from a photograph depicting a favourite place, a pet, flowers…anything which provides hope!  So, as I have been unwell lately and have not been able to participate in the Weekly Photo Challenge, I thought I would share some pictures that bring me hope!

My beautiful dog Honey who provides comfort, laughs, cuddles and kisses during times of illness and being bed-ridden!

 

This is a picture of Honey on ‘Rhiann Watch’ on a day in which I was in bed due to severe dizziness and incredible weakness in my legs. Was home alone so Honey saw it has her duty to keep me company and make sure all is well!

 

I love sunflowers, all flowers really! They are really pretty to look at – and sunflowers especially. At a recent ‘Life 4 Living’ group session we were asked to visualise sunflowers as part of a stress relieving exercise – which really does work!

 

And for all of you who know me – know that I really love butterflies!! I find them really inspiring for all that they represent and stand for. They are the epitome of change and growth

To see more images of hope you can view them here

 

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In Chronic Illness

WEGO Health Advocating for Another Carnival: Wrap it Up!

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Welcome to the final post of the WEGO Health ‘Advocating for Another’ Carnival!  Hope you have all enjoyed the posts of this special week-long blog carnival.  I welcome any comments that you may have and now you can also contact me via email, or even on Facebook, Twitter, Pinterest or even Google +

The last prompt of this carnival says:

Put a bow on our Advocating for Another week by sharing what you’ll plan to do going forward.  Free write or choose one of the bonus ideas…

So, what next?  Well, I am certainly going to continue with the blog – writing about life with this condition, problems and the truths behind living with an invisible illness and spreading awareness to others about the reality of invisible illnesses.  I am hoping to continue my work by blogging for the Invisible Illness Awareness Week.  And will take advantage of every opportunity to write that I can, from upcoming WEGO Health projects to the Invisible Illness Awareness Week – they all provide excellent opportunities to blog and spread awareness as well as providing brilliant inspiration on what to write.  The prompts and ideas often challenge us as writers’, often making us better storytellers and writers.

Will also continue using social media along with the blog – Facebook and Twitter to connect with others and hopefully making new friends along the way!

And in my private life, I am hoping that the group I am involved with will continue to grow and thrive, and am looking forward to the new opportunities that will present itself as secretary of the group – we already have so many great plans for the group.  Along with that I will also continue my work as a volunteer and now have been lined up as a potential tutor for courses as well as being asked to produce a newsletter for the Centre.

And all of this whilst trying hard to maintain my health and keeping as well as possible!

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WEGO Health Advocating for Another Carnival: Letter

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Welcome to the penultimate post of the WEGO Health ‘Advocating for Another’ Carnival.  Hope you all have enjoyed the posts so far.  Today’s prompt reads as follows:

Write a letter to your community and share a story of your own with them.  Extra points if you record yourself reading the letter telegram style! 

To those within my health community

I would first like to say thank you to all of you who have supported me and sent me messages during the bad times and shared my joy during the good.  Would also like to thank you for your friendship and kind words that you have written to me, and becoming a part of my ‘online’ family.  You are all unique and special, and although we all have difficulties and feel that we are unable to do certain activities, one thing that I have learnt and would like to share with you, is we all have something of valuable to offer.

It has taken me a long time to realise this, but is of something of value that I would love to share.   As most of you know, I regularly volunteer one day of my time to help at a local mental health   resource centre.  Recently, the Centre held an Open day and was looking for volunteers to go out with a collection bucket for monetary donations.  As I have significant weakness in my legs, I was unable to go out with the other volunteers in case my legs gave way.  However, I came to realise that although I was unable to volunteer in this way, there were plenty of other ways that I could help out.  For example, I am able to:

  • sit down and help make sandwiches and refreshments
  • with my crutch am able to go and greet people at the door and welcome them inside
  • during the Open Day itself I was on hand to give the ladies a pampering session with hand massages and painting nails
  • sit down and talk to the visitors

Often on the days I volunteer, I have started to even help deliver some of the courses that the Centre offers such as those on Stress and Anxiety Management – and is great seeing service users leaving these courses more confident and happier than when they arrived!  So, if some of you are reading this and thinking that due to circumstances you are unable to do this or that, than I am sure it is not sure, and even if it requires some deep thought, there might be ways around the problem.  A solution that makes it possible for you to achieve whatever it is you want to do.  And am sure that there are lots of ways that you are able to help organisations and volunteer your time.   After all we all have a variety of skills to offer!

From

Rhiann x

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