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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

“If I could do anything as a Health Activist…” 

Think big today!  Money/time/physical limitations are no longer an issue.  What is your biggest goal that is now possible? 

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At the moment, as some of you may be aware, I attend a couple of social groups twice a week.  These are open to everyone whether or not they have a chronic illness or not.  The majority of the people who currently attend are middle-aged, and am by far the youngest person there!  However, I do not mind this, and thoroughly enjoy the company when I attend the groups.

However, if there were no limitations placed upon my life, especially, the limitations that my illness places upon me, I would love to start a group specifically for younger people with chronic illness or disabilities; this will not only allow me to start a group that would support others that may experience problems associated with illness and disability such as isolation and loneliness but will also allow myself to meet others who are closer to my age.

This group would not only allow the opportunity to meet up and talk to others but I would also aim to apply for funding for trips to local sights and other amenities.  In my own experiences, my illness and disability has isolated me from my peers, and have often kept me inside of the house, unable to go to places which may be of interest to me.  So, allowing the opportunity to go on trips will break the isolation for myself and many others.

It has also been an idea of mine for some time, to also start a regular support group for people with dizziness problems like mine.  Many people in my life, as best as they can, try to understand what it is to live with constant dizziness, but as we all know, it is very difficult to understand something that you have never experienced.  So, it would be great to meet others, that are also living with dizziness for support and understanding, as well as gaining tips and coping strategies from each other!

And if money was of no issue, perhaps setting up a charity for those living with neurological conditions; a charity that aims to provide support and resources for a wide variety of neurological conditions that may not be covered by other specific neurological charities (such as MS Society UK).  Living with the condition like I have, a long-standing brain stem lesion, I have found that it is extremely difficult to find a group or charity that fits my specific diagnosis, and therefore, it can even be more isolating as I have no idea which charity or organisation I can turn to for support and guidance.  Wouldn’t it be great, therefore, to have a large general neurological based charity that can give advice, help with resources and support for anyone living with a brain condition – a place where anyone living with a neurological condition can belong.

It would be great to leave a long-lasting legacy after I am no longer here….

 

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt is as follows:

Post a picture that symbolises your condition and your experiences 

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Taken from: Matt Lassen Cartoons: Word of the Day  – May 28 2011

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!

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Welcome to another post for the ’12 Days of being Chronically Thankful’, a revised version of the famous ’12 Days of Christmas’ for those living with chronic illness, like me.

On the ‘6th Day of Christmas’ I was chronically thankful for…a theatre production!

Now, living with a chronic condition like mine, I am unable to attend a theatre production in person – most theatres are very big with high ceilings, as most of you are aware, high ceilings, and flashing fluorescent lights are a trigger for the episodes of severe vertigo that I often experience, and hence going to see a theatre production would make me extremely unwell.

However, a few weeks back, during one of my first trips out with my P.A, we visited my local library, and lo and behold I found a copy of a DVD of a production of ‘Les Misèrables’ that was filmed at the O2 for the show’s 25 year Anniversary.  I was so excited as  it is a show that I haven’t wanted to see for years, but because of my condition I have been unable to go and see it in London.

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As a result, I instantly decided that I would rent it from the library, and on a day in which I felt really bad, leaving me unable to get out of bed, I managed to watch it on my computer.  And I instantly fell in love with the musical – the story, the songs just everything about it!  And for a couple of hours, I forgot about how bad I felt, I was still aware of the dizziness and vertigo as they are hard to ignore!  However, I was so engrossed with the production of this amazing musical that I was able to ignore it, and just really enjoy the DVD!

And now I am equally excited for the film version of Les Misérables, starring Hugh Jackman, Russell Crowe and Anne Hathaway among others – and perhaps even planning a trip to the cinema with my Personal Assistant, it will be difficult for me being in the building but I am determined to achieve this feat!

And for that I am ‘chronically’ thankful!

Welcome everybody; am writing this post on a quiet Sunday afternoon.  For today I have chosen a short prompt as this particular day I really am not feeling well.  I have chosen a prompt from an earlier date.  In the prompt entitled ‘Anatomy Post’ it was asked that we re-labelled an anatomy picture with new names or descriptions the body parts.  I have chosen to label the different parts of the body which are affected by the differing symptoms that are caused by my condition; some of them are invisible such as the dizziness and vertigo so I have used the body part in which these symptoms originate (i.e. the brain).

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