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Taking Part in a New Project!!

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Hey Everyone

Hope you are all well, sorry I haven’t updated for a few days but again have not been feeling well – some were even spent bedridden as it was so bad, legs feeling so weak and every part of my body feeling so lethargic.  Also, have been quite busy – I have now for a couple of months have been attending a new group within my local area, many of the attendees like myself suffer with some form of disability or illness, or perhaps those who for a number of reasons find themselves stuck in the house alone.  The group, called ‘Life 4 Living is an initiative of the Pontypridd Disability Team, a branch of the RCT Social Services, the ethos of the group being to encourage friendships and for its members to spend time in a friendly, relaxed and fun environment, focusing on how to get the most out of life and to develop a positive attitude to living life to the full despite the circumstances that life has dealt you.

Anyway, recently we have formed what is called a ‘constituted group’ – to make the group more official, and hopefully be able to apply for some funding for trips for all the members – places of interest and fun activities that all members can partake in.  So, to form a constituted group, there needs to be a committee and I am happy to announce they have all voted for me to become secretary!!  So, in the times that I have not been so ill in bed, have been preparing for my new role!

And on to another piece of news…As some of you may remember, I took part in a challenge back in April called the Health Activist Writer’s Month Challenge.  The organisation that ran the challenge is WEGO Health, a fantastic health online community that empowers health bloggers like myself to connect with audiences and each other to spread the word of the health cause or condition that we write about.  Well, they have just launched a brand new project entitled:

It’s called the ‘HealthSecret’ which is based upon a project, PostSecret by a man called Frank Warren whereby people mail their secrets anonymously on a homemade postcard.  So, WEGO Health are asking all health activists or bloggers to mail their secrets to them on a postcard, letter or note – just as long as it gets to them via ‘snail mail.’

They are not even looking for ‘secrets’ per se, they are asking for people to write about themselves, their health condition or health community that affects them and may not be widely known.  It could even be a letter telling others exactly what it is like to live with the condition they have, or even sharing knowledge with people who may have been recently diagnosed.  Basically anything that the health activist wants others to know about their particular health cause or condition.  And with all of the postcards, letters or notes sent in, the people at WEGO Health are going to compile them into a great e-book which you can sign up for here 

So, I think this is a wonderful idea, and gets us all to be a little creative and to spread the word about out particular health conditions – I personally love handwritten mail, they just seem so personal and a sense that a lot of time and thought has gone into writing it and I am looking forward to sending in my contribution.  I have even bought a new writing set especially for the project!!:

So, if you are someone perhaps with a condition which is uncommon or perhaps one which is misunderstood by the general public then get involved in HealthSecret and shine a light on the truth as it is for you!!

You can send all letters, postcards or notes to:

WEGO Health

180 Lincoln St.

5th Floor

Boston

MA, 02111

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In Chronic Illness

A new dawn for Health Care…

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Hello Everyone

Time for another blog post.  As my regular readers know that I have taken part in the WEGO Health Activist Writer’s Month Challenge back in April and since then I have still been an active member of the WEGO Health Community, taking part in chats via Twitter, posting on their Facebook page and so on.

And for June as the above picture describes, WEGO Health is talking technology – how technology is shaping and has shaped healthcare.  Most of us know by now that technology has played a significant role for some years within the medical field – from the introduction of a wide range of medical devices such as the MRI, a scanner which has significantly improved the diagnostic process for a wide range of conditions, firstly making it a lot easier to diagnose conditions as well as speeding up the process.

Technology has also made it possible for doctors to shy away from the old paper medical records and instead opt for Electronic Health Records – – all out health records now stored on computers, at the touch of a button or the press of a few keys, doctors can bring up your entire medical history to help them identify the best course of treatment for your condition.  There are even computerised robots that can perform some surgical procedures on patients, one such example is the da Vinci Surgical System which can perform complex and delicate surgical procedures with increased vision, precision, dexterity and control.  The machine has even been featured on medical TV dramas such as Grey’s Anatomy.

The da Vinci Surgical System, Image: http://www.intuitivesurgical.com/products/davinci_surgical_system/

Now, however not only can new technologies has changed how healthcare is practiced it has also given patients the tools to be able to take charge and have a more active role in their healthcare and subsequent treatment.   Now, patients are able to buy equipment such as home blood pressure monitors – but not only this but the introduction of ‘smartphones’ has enabled patients worldwide to be able to download a wide variety of applications for everything from being able to take notes to tracking sleeping patterns, there really is “an app” for just about everything.  So, I thought I would take this opportunity as part of the WEGO Heath ‘Health Technology Month’, to share some of my favourite apps which I use daily on my own iPhone.

One of my two favourite apps, has to be for the popular social networks, Facebook and Twitter – these applications keep me up to date with the latest news, views and whatever else from my family, friends, favourite brands and so on, wherever I am, whether it be on my sick-bed on those very bad days where the dizziness is so intense and balance is so very poor that I can barely stand or on the frequent occasions where I can walk or stand due to the severe weakness in my legs, or when I am on the move!  They keep me occupied and entertained reading what is going on within my social circle and family, the ability to rant on them and gain support from others is so helpful and can lift the spirits when living and coping with a chronic health condition.  They also provide me with the opportunity to network with other health bloggers and get the word about my latest blog post!!

Another app that I have recently discovered, and have been raving about as it so useful for those of us who may be battling with a chronic condition, one which like mine is completely unpredictable, not knowing what today is going to bring, whether it will be a good or a bad day.  So, one option would be to keep track of each day – the severity of the symptoms experienced, and keeping a note of activities or possible triggers which may have contributed to the worsening of symptoms.  And now I have found the perfect app to do this – introducing the Symple Health Tracker, which is advertised as a daily symptom diary.  It’s so quick and easy to fill in, only takes a few seconds to complete.  In the full application (which you have to pay for) the user is able to track up to 20 symptoms at a time, and can even set up reminders so you never miss a day completing the diary.  In addition you are able to set up custom tags to record possible triggers or perhaps the medications that you are taking or other therapies a person may be undergoing.  There is also the options to jot down notes about the day or how you felt, and can even upload photographs for a visual history of rashes or swollen joints.

All this makes it so much easier to keep track of the symptoms experienced with your specific condition, illness or disability and with the ability to add ‘tags’, it may be that you are able to spot specific patterns to the symptoms experienced, if medications are effective or not, or even whether there triggers that you didn’t even know existed so you are able to change your lifestyle and help you gain more control over your health – and hopefully improve your over all health.   Here is a link to the app for the iPhone: http://itunes.apple.com/us/app/symple-symptom-tracker/id479818115?mt=8


So, I don’t know whether or not any of you are like me, but I am constantly forgetting to take my medications – and now patients are able to download an app to remind them to take the medications at specific times, for example, I have to take 3 doses of one of my medications, and I like to take it at regular intervals – I usually take 1 dose at 9.00 a.m., then again at 3 p.m. and the last one at 9.00 p.m.. however I was finding that at times I was so busy or engrossed in what I was doing that I kept forgetting to take them.  So, I decided to download an app to remind myself when to take them – and lo and behold I now never forget to take any of my medications.

Now there are many different options for this specific type of application, but the best that I have found is called the Pillboxie – an easy and visual way to take your medications.  There are many different medications out there, all in different shapes, sizes and even colours.  With the Pillboxie you simply add the name of the medication you want it to remember and select the appearance of the pill (selecting what shape and colour the specific pill is) and the times which you want to take it and it’s done!!  And you never have to forget to take your medications again!  And for those who may have to inject themselves or use drops there is also an option for these too if again you need to remember when to use these.

Link to the app for iPhone: http://itunes.apple.com/us/app/pillboxie/id417367089?mt=8

And the last app, that I am going to talk about is Evernote – now, it isn’t a health app but I find it extremely useful in saving any information, web pages, links or even a specific passage that I might come across regarding anything to do with my health, symptoms or condition so I never have to forget where I found the information. Or even if I for an appointment with my GP or consultant and he says something which is important, I can even create my own note and type away.  With Evernote it’s not only text that you can save but you can even save photographs, or even an audio clip!!  And there are even different options to access the things that you have saved – it has been said that it works with nearly every computer, phone and mobile device out there.  Here is an image of how it works:

Image take from: http://johnkendrick.files.wordpress.com/2008/12/evernote.jpg

So there are some of my favourite apps for my iPod and iPhone, do any of you have any recommendations on any other health related apps that are available? – I would love to know what some of your favourite apps are.  So get involved and let us all know the best  health apps that are out there!!

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WEGO Health: Myth Mugshot Photo Contest!!

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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

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In Chronic Illness

My Life…My Truth

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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…

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HAWMC: A Reflection

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Welcome to the very last post of the WEGO Health Activist Writer’s Month Challenge – a time to reflect on the last thirty days, writing everyday based on prompts provided.

I personally would like to thank WEGO Health for the opportunity to take part in the ’30 Days, 30 Posts’ Challenge.  The prompts provided allowed me the opportunity to think about my condition and the challenges associated with it in more detail and also made me think about my health, and the difficulties I face in more detail, and how I may be able to overcome them.  The HAWMC also challenged me as a writer, writing in different styles that I may not have used otherwise, and the ‘fun’ prompts such as the Haiku poem or the madlib was completely different to anything I have tried before.

My favourite prompt?  My favourite prompt was those using images to convey my health condition and health focus.  It was difficult at first, as my particular condition is ‘invisible’ but I found clever ways to portray the neurological condition I live with.  The Word Cloud was really fun, just choosing particular words or phrases that I associate with my condition, and the word cloud itself looked amazing.

The most difficult prompt?  One of them which I found most challenging, emotionally and bringing up painful memories from the past was the ‘Dear 16-year-old-me‘, although I found the Health Mascot also challenging, particularly as I am unable to draw, which my efforts probably showed!

Which ideas will you reuse? I am not sure whether I will reuse any of them, as I like to write fresh ideas or themes, so am not sure whether I would be able to reuse any of the prompts giving them a fresh perspective but will give the bonus prompts a go.

Who was your favourite fellow blogger?  I have several one that I have followed and read all of their prompts that they have written, finding them interesting, informative and inspirational.  One of them is Theresa, a close friend of mine, and as we have similar problems such as living with chronic dizziness I was really able to relate to her posts.  Another favourite is Katina, at Butterfly Lessons, a blog about ‘living a fabulous life with lupus’, a really interesting and uplifting read and love the positivity the blog exudes.  And my third favourite is Kim over at Hope Whispers, about living with a rare liver disease called Budd-Chiari Syndrome – another really positive and uplifting blog, and really highlights the importance of organ donation and is also really interesting reading about other illnesses or conditions different from your own.

Thanks again WEGO Health for the opportunity to take part in the ’30 Days, 30 Posts’ Challenge – I have enjoyed every minute, enjoyed even the prompts that challenged me.  And thank you for the opportunity to not only write about different aspects of my health condition but also the opportunity to write about other aspects of my life – after all we are not defined by our health conditions, illnesses or disabilities.  And thank you for challenging  and pushing me as a writer, maybe I have even become a better writer because of it.  Even though I have found some aspects and prompts very difficult, I DID IT!!!

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