Category

Chronic Illness

Category

Hello again!! Sorry I haven’t posted anything for a while but have been busy with volunteering and the new group which I attend in my local town. At the minute we are preparing a newsletter to promote the group for which I have written an article for and other bits and pieces.

Anyway as June is upon us, it has been well advertised that the Olympics are nearly among us, in fact today marks 56 days until the Opening Ceremony. An event which has been said is going to benefit London as a whole. However how accurate is this particular statement? Especially for those with disabilities and the house-bound living near the Olympic Stadium and the other venues that will host events during the games.

During the Olympic Games and Paralympic Games many services tailored for the disabled community will cease during the three months that the games will take place. For those disabled people, plus not forgetting the elderly population it means that the ‘Meals on Wheels’ service, that is vital for so many, particularly those living on their own or for whatever reason are unable to cook for themselves, will not be able to deliver the service due to many roads closures that will take place during the Summer.

In addition, many of the supermarkets surrounding East London have also notified many customers that they will unable to deliver their groceries during build-up to and during the games. This will obviously have an adverse impact on those disabled people, who may live alone and rely heavily on the convenience of internet shopping and will need to seek alternative arrangements. Also, for many disabled or elderly people, it can be a real struggle to get out of the house, take for example, myself I am dependent on my father to take me to doctors’ and hospital appointments and other places where I may need to go – however, if my father is unable to take me because he is unavailable, then I rely solely on taxi’s to get me to wherever I need to go. However, for those living close to the Olympic Stadium, and other areas, this foe them will no longer be an option due to security road closures.

Image: http://www.reducedmobility.eu/The-News/the-london2012-olympics-and-paralympics-accessible-to-all-except-the-disabled.html

So, for many elderly and disabled people these 2012 London Olympic and Paralympic Games will leave them prisoner in their homes, isolated and alone, a stark contrast to the vibrant and exciting party atmosphere that it will create for the London community. And it is not just the inconvenience it will create for the elderly and disabled, having meals-on-wheels delivered as well as supermarket deliveries, not alone provide people with the necessities that is needed to live but also provides the ability for social interaction, without that many people would be alone without having anyone to talk too.

It may also mean that the disabled and elderly will be unable to make medical appointments, which for may are necessary to stay on track with medical conditions, and without could mean the difference between life and death. Other services which could also be affected during the Olympic Games for many disabled and elderly residents are services such as:

  • Personal Assistants, Carers or Social Workers unable to visit due to road closures or lack of parking due to the high number of visitors in London
  • Lunch Clubs and other Community Centres
  • Friends and family being able to visit
  • Benefits Service
  • Libraries

And the list goes on and on!! I am personally not affected by these changes, as I do not live in London but as a disabled person myself I can empathise with the plight of so many that will be affected by the problems that the Olympics will have on many services and businesses that are relied upon by the elderly or disabled. It is just a shame that these people have been forgotten about during the man reports and stories that have emerged on the news and other programmes about the London 2012 Olympic Games.

It is said that will rejuvenate and reinvent many parts of London and will benefit London as a whole but the real question is: ‘Will it really benefit all Londoners, or just a select few’?

And that will the impact be for the elderly and disabled living in London?

A person on Facebook has set up a page entitled ‘London 2012 Should NOT Mean Vulnerable People Suffer which you can also visit for more information and a link to a petition urging the government to take urgent action to prevent individuals with mobility problems suffering and being imprisoned in their homes during the Olympics. You can visit the page here

Hey Everyone

Right for those who are on Facebook, I would really appreciate some help.  For May, the folks at WEGO Health are aiming to dispel common misconceptions and myths surrounding illness and disabilities.

One of the ways in which they are raising awareness of different health conditions and causes is to hold a ‘Myth Mugshot Photo Contest’ which gets patients, carers of health activists like myself to share something that is true and important to their particular condition or cause, and to upload a photograph of ourselves holding a piece of paper that tells the truth about the person’s particular health condition.

I ave decided to share the following:

Hidden Disabilities DO Exist

There are many people still out there who still believe that if a person does not look sick or disabled then there can’t be much wrong with them.  This of course is s a huge misconception as there a large number of health conditions which are hidden, and cannot tell by looking at someone that they have a particular health condition.  These include conditions such as depression, anxiety, diabetes, neurological conditions, those with brain injuries and the list goes on and on.

So please for those who are on Facebook please visit the WEGO Health Myth Mugshots Photo Contest Page (just click the link!) and ‘Like’ my photo (the 14th one on the page) of me holding a sheet which says my truth (“Hidden Disabilities DO Exist”)

Thank you

Hello, readers new and old – hope you are all well.

Or much better than I have been lately anyway – it really hasn’t been a great time for me, with legs giving way much more, becoming weaker, even leaving me in bed for a whole day a couple of weekends ago.  Whenever I attempted to stand, my legs would just collapse from under me…

A lot of people, would think it would be great to spend a whole day in bed, not doing anything – no chores, nothing instead spending the day watching TV, films or listening to music.  However, let me tell you the reality of it – it is so boring being stuck in a bed, I would much rather be doing something much more constructive than watching endless episodes of CSI, despite it being one of my favourite shows.

On topic, I was recently reading an excellent blog post regarding a person’s experience of a condition in which she describes as having ‘many voices’ and in which the community of people with the same condition is large – each sharing their own personal experiences of living with a chronic illness.

And that got me thinking of my condition – long-standing brain stem lesion and spastic paraparesis.  To search information about it, is extremely difficult – most being medical journals, to difficult to understand for those without a medical degree!  And the big fact that I have not met one single other person with either diagnosis.

Many of the information that can be found regarding my condition are those usually found on websites about Multiple Sclerosis, as MS can present with brain stem lesions, and spasticity of which I suffer is a common complaint within the MS Community.

However, I do not have MS, so therefore am unable to really approach MS organisations for support and information.  Near to me is an organisation for people with brain injuries called Headway, however many of the case studies that I have read suggests that the organisation provides support and help for those with acquired brain injuries – usually those sustained in adulthood as a result of an accident or trauma.

So where do I turn for help and support with my condition? I feel as if I am one person, on my own living with this condition with nowhere to turn, or for people to listen and understand just exactly what I am living with day-to-day…

Image: http://www.bbc.co.uk/wales/audiencecouncil/sites/your-voice/

 

You think that you know, but you have no idea what living with my condition is like.  People make snap judgements based upon many different factors such as appearance, body language, posture and so on.

So, I have decided to write a post regarding misconceptions regarding my condition and my life that people may have, inspired by WEGO Health’s ‘True Life Tuesday Blog Party’.

The first misconception has that as I appear ‘normal’, I cannot possibly be disabled.  However hidden disabilities do exist and exist in many different forms – such as mental illness, learning disabilities and many neurological conditions such as my own.  Hidden disabilities can create significant limitations for the person, the only difference is that we cannot see these limitations and barriers as we can with those who are blind in a wheelchair.  Take my case for example, the weakness in my legs are not visible to the outside world, but it does and affects me greatly such as not being able to stand for very long and experiencing many falls daily.

Image: BBC News

“Your dizziness is caused by anxiety; you just need to learn to relax” is one misconception that I have experienced by many people over the years – especially by doctors.  However, although anxiety does play a part as I often felt anxious about the dizziness, which only seemed to magnify the unpleasant symptom even more.  Although relaxation and breathing exercises did help with feeling calmer and less anxious, it did not help regarding the dizziness, and was still very much present in my daily life.  As anxiety and other psychological problems was not the root cause of the dizziness but instead a by-product of it.

“You are constantly falling over, you must be drunk” is another misconception that many people may think when seeing me, as I am often swaying or stumbling and falling over, many symptoms people exhibit when intoxicated.  However, with neurological disorders such as mine and many others, the unsteadiness and constant imbalance is caused by the lesions that exist within my brain stem – causing dizziness, problems with balance, and in my case stiffness and weakness in my legs.  The spastic paraparesis often causes great difficulty with walking, especially when they are weak, as they often just give way from under me with no warning causing falls.

“You don’t look sick, you must be feeling fine” is one which I am sure many people with hidden disabilities or invisible illnesses such as mine often experience in daily life.  People make judgements based solely on appearance – but just because someone may look fine doesn’t necessarily mean they feel good on the inside.  Due to the long-standing brain stem lesion, I experience constant dizziness with frequent episodes of vertigo and consequently often feel very unwell, but as a young woman, when going out I don’t want to look ill, so I use make-up to hide the dark circles under my eyes – to give me a natural healthy glow.

And  my last misconception is based upon glances I receive when I am out using my crutch.  These stares and looks seem to say “Why the hell are you using that crutch, you don’t seem to need it”.  Again, as I am not exhibiting a broken leg or some other sign of injury, I couldn’t possibly need to use an aid such as a crutch, to look at me I look perfectly  ‘normal’ and ‘healthy’ but hiding deep inside are lesions causing imbalance and weakness in legs and so on, often leading to stumbles and falls, and using a crutch makes me feel much more stable when walking.

So, these are the misconceptions regarding my health condition.  Try and imagine a person exhibiting some of the symptoms I experience, are these any other misconceptions or judgements that you might make regarding that person? Would love to hear your thoughts and suggestions…

Image: http://abledis.com

I think I have previously mentioned that I was taking part in a fantastic project entitled the ‘12-12-12 Project: 12 Month, 12 Journeys, 12 Lessons‘ over at my great friend Marissa’s blog, Abledis.

As part of the project, Marissa featured my condition – long-standing brain stem lesion and spastic paraparesis on her website, learning all about it, and the effects it has on my life and so on.  Also, Marissa asked me to complete a podcast interview with her about my health condition and life, which we completed last week, and is now up for everyone to hear.  You can find the podcast here:

April Podcast Interview: Rhiann Johns

And there was also a special guest featured!!  Who? You’ll have to listen to find out!!

Pin It