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NHBPM Day 1: “There’s always an app for that…”

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It’s November which means only one thing – it’s time again for the National Health Blog Post hosted by WEGO Health! And once again I am determined to take part and write a post everyday regarding my experiences with chronic illness.

As a member of the Chronically Ill community or a ‘spoonie’ as we are more commonly referred (see my post regarding spoonies and the spoon theory here) I need a number of different apps for a variety of different reasons – those apps to remind me to take my medications throughout the day; apps to help keep track of my personal health conditions such as the frequency and severity of the symptoms I am experiencing.  But I also have a number of apps that I use regularly that although not health-related, they do help me through bad times due to chronic illness such as Twitter and Facebook to help me keep in contact with all of the friends that I have met during my personal  journey with illness.  And there are some games that I play to keep me entertained whether it be in bed when I am too weak to get out of bed, or whether it be for the long waits at hospital waiting for my appointment to begin.  My personal favourites are ‘Candy Crush Saga’ and ‘Pet Rescue Saga’, and fun word games such as ‘4 Pics 1 Word’.  I also use Instagram to not only document in pictures life with my neurological condition but also to help document successes such as going somewhere new or simply as reminders for fun times to look back on when things are bad.

 

There's an app for that!
There’s an app for that!

 

However, those are the apps that I have on my smartphone, but now technology has developed, I also have apps on my tablet computer which I use when I am stuck in bed or when I am pottering around the house to distract myself from the horrible symptoms.  The apps that have made it on my tablet are more entertainment based for the reasons that I have given.  For example, I have ‘Netflix’ so that I can watch films or TV programmes from the comfort of bed; and especially convenient as it saves a trip out of bed to put a DVD on as my legs are sometimes too weak to be able to do just that.  As well as ‘Netflix’ there is also ‘Sky Go’ and catch-up services such as the ‘BBC iPlayer’ and ‘ITV Player’ to allow me to catch-up on programmes that I have missed.  I also have a jigsaw puzzle game that helps distract me from the pain, trembling and dizziness  which helps, and finally there is ‘Skype’ that I have just downloaded to my iPad that I intend to use to speak to my friends during times that I cannot get to my computer.

As both my smartphone and tablet computer are Apple Products I use the Apple App Store to find the apps that I own.  But for those that are health-related such as ‘Pillboxie’ that I use to alert me to take my medications and the ‘Symple’ app to track the symptoms I experience it may also be useful to talk to other spoonies suffering from a similar conditions as yourself to find apps that they find useful.  And always try the free app first and then if the app is right for you and your needs then purchase the full version.

 

Links to Apps that I have found useful:

  • Symple:  An elegant symptom journal for your iPhone. Easy to use, and flexible enough to meet any set of symptoms, regardless of condition or disease
  • Pillboxie: Pillboxie is the easy way to remember your meds. Other med reminder apps are either too complicated or just downright boring. Pillboxie is easy because it lets you “visually” manage your meds. Scheduling a reminder is as easy as dropping a pill into a pillbox

 

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Social Media and the chronic illness experience

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This post is for the ‘Patients for a Moment Blog Carnival’ hosted by Leslie at ‘Getting Closer to Myself‘.

This month’s theme is Social Media and illness, with which there are two parts!  The first part is to describe our illness using just 140 characters; just as if we were using Twitter to do so.  This could just be one statement characterising the illness experience, or a series of statements of 140 characters.

The second part of the challenge asks us to describe how social media has personally impacted our illness experience.

So, how can I describe my condition just using 140 characters?  Well, this could be extremely challenging giving the complexity and the unrecognised nature of my illness.  But here it goes…

Neurological condition affecting the brainstem. The effects include constant dizziness, vertigo and spastic paraparesis affecting the legs

The first part is self-explanatory, obviously the illness that I live with is a result of a neurological condition, known as a long-standing brain-stem lesion.  The lesion is scarring of the brainstem, possibly as a result of a head injury of birth, although as it was diagnosed years later, the exact cause of the lesion is unknown.  The effects that I listed are the main symptoms that I experience as a result of the neurological condition.  As the statement suggests this include the constant dizziness (feeling as if my world is unbalanced), vertigo (as if the world around me is spinning).  The spastic paraparesis is another symptoms that is troublesome to my daily life.  It affects primarily the legs as suggested by the above statement.  It causes stiffness and weakness of the legs which makes it uncomfortable and at times very difficult to walk.  Often due to the weakness, it can cause my legs to suddenly give way from under me.  Recently, I have been battling severe trembling in the legs, a jelly-like feeling in my legs, which above all is extremely uncomfortable and leaves me unable to stand for long.  Of course, there are other symptoms that I experience such as nausea, neuropathic pain and fatigue.

Are you able to describe your condition in 140 characters?  Give it a try!

 

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To the second part, then!  How has social media impacted my illness experience?  For starters, the impact upon my illness experience is mainly positive.  Social media, not only allows patients to connect with others and share their stories and experiences, it also allows patients to raise awareness of their particular chronic illness, and share with others what it is like to live with illness every day, and everything that goes with it, for example, I often tweet via Twitter on how I am feeling, and attempt to write how the symptoms affect me and what it is like to live with them.  Not only is social media fantastic and advocating and raising awareness of illness, but it is great to connect with others, particularly when we are experiencing a flare or relapse, and gain support from other patients in similar circumstances.  It provides camaraderie for those experiencing chronic illness, like myself.

Think about when you are ill in bed, it often involves being stuck in bed, alone whilst everyone else is busy living their lives.  Asa  result, it often leaves you feel lonely and isolated, right?  Think if illness was a regular part of your life; being stuck in bed, lonely in your bedroom with no company was a regular part of your routine.  That feeling of loneliness and isolation is also a regular part of your life, however Twitter and other forms of social media, provides patients with chronic illness a perfect tonic, as it allows to converse with other people even when in bed via new technologies such as smartphones and tablets.

It provides entertainment and diversion from illness.   Often, when I am bed bound due to the extreme weakness in my legs, or due to severe dizziness, I am very grateful for the supportive messages that I receive on Twitter from other chronically ill patients and friends; they really brighten the day, and also reminds me that I am not alone on the journey through illness.  Social media provides real-life perspectives on illness, and besides the entertainment and social aspects, perhaps the most valuable features of such sites is it’s a place free from judgement and stimatisation that many experience in the real-world, as well as educating others about particular medical conditions in order to tackle the problem of stigma .

 

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HAWMC 2013 Day 11: Why I love to Tweet!

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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:

Write about your favourite social network.  Do you love Twitter? Facebook? Pinterest?  Why? 

I can be found on most social networks – Facebook, Twitter, Google+, Pinterest and Instagram!  Facebook used to be my first choice of social networks as, it was the one all my friends used; it was convenient and had a lot of features that I could integrate with online socialising such as the messenger IM, games and so on.  However, since starting the blog and the health activism, Twitter has now become my favourite social network to use.

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Twitter has become my favourite social network for several reasons:

  1. It only allows 140 characters per tweet and therefore is quick to get your message out there.  It gets straight to the point, and can easily receive and view content quickly 
  2. You can be updated with current and breaking news which can come in very handy.  You can follow organisations, charities, or even experts on your specific interest, and able to get up to date on all the latest research, studies and advice relating to your health condition for example
  3. I love the ‘favourites’ feature – with so many blogs and articles that people tweet which I want to read but often don’t have the time, I can ‘favourite’ them; and save those links which I can read later when I have the time
  4. Twitter allows you to send your message; your story where potentially millions of people will hear it
  5. Twitter is also great for promoting your blog and new posts which have just been published and to get more traffic to the blog.  According to my site statistics the majority of people find my blog through Twitter
  6. It is a great platform for networking with other ‘spoonies’ and make new and lasting friendships – I have been blessed to have met so many wonderful people, who I now regard as great friends.  Twitter allows us all to stay connected and to stay up-to-date with what is going on with each other.  For example, if we read that someone is having a bad day then we can send messages of support and comfort.  Twitter can basically used to form a small community of like-minded people, or people with shared experiences or in out cases illnesses!
  7. Twitter is also a great platform to express opinions on a wide variety of local and global issues; and for bloggers and health activists especially it allows us to express opinions on the issues that matter most to us, and what is relevant to our health conditions
  8. Twitter can also be a great tool for researching and finding new information by searching using specific hashtags.  This may be useful for patients wanting to find information on new treatments or therapies that have been recommended by their medical team and determine how effective or what other patients thought of the treatment/therapy
  9. The service TweetChat allows users to get involved and communicate live with organisations and chat with like-minded people.  I love getting involved with the WEGO Health Chats via Twitter every week and discussing various topics relating to the chronic illness community
  10. There are plenty of Twitter users that provides us all with a constant flow of positive quotes and messages in order to remind us to direct our thoughts in a positive way and become better than we are.  You can log in to Twitter on a bad day and within minutes be lifted by positive words
  11. Twitter can be used on computers, phones and tablets via the website or an application that can be downloaded – so you are able to get your message out anytime, anywhere!

Furthermore, if it was not for Twitter, I would never have met some wonderful people and help form the ‘Spoonie Book Club’ – a book club for those of us battling with chronic illness.  A fantastic opportunity to talk with friends on topics that matter most to us, but more than that, also allows us to forget about our illnesses and conditions for an hour and just have fun discussing a great book and have some fun.  Thanks to the other ladies that helped form the book group – Aisha, Anya and Megan!

If you would like to join and discuss some great books, you can connect with us by using the hashtag #spooniebookclub – the details of the book for this month can be found here

What is your favourite social network?  And why?  As ever would love to hear your thoughts!

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NHBPM Day Fifteen: Wish my Doctor would use social media!!

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Welcome to another post for the ‘National Health Blog Post Month’…. and today’s topic is whether healthcare professionals, such as Doctors should embrace social media.

As most of you are aware, I live in the United Kingdom and social media is not really used by healthcare professionals as of yet.  I believe they should – many brands and companies have already embraced the role of social media to engage consumers and to make them aware of products and special offers.  So why not healthcare professionals?

Many healthcare companies and charities associated with various conditions and disabilities have already started using social media to get the word out – to educate and inform existing followers whilst also attracting new followers/patients.  Social media can allow these healthcare companies and non-profits to connect and collaborate more effectively with each other and their communities.  It is a tool for change and awareness.

Already, some healthcare companies have started using technology – for example, certain pharmacies in the UK have started using text messaging services to let their patients know when their prescriptions are ready for collection – very useful for patients who may due to their condition, or side effects from medications may forget necessary details such as this.

I am aware, that a small number of healthcare professionals in the USA and other parts of the world have started using technology and social media to communicate with their patients, such as using email to converse with patients regarding health matters, using social networks such as Twitter to track disease trends.  However, these instances are not common amongst most doctors – many still prefer the old pen and paper approach to keep track of patients medical records, and when technology are used it is only to communicate with other doctors, or to update medical records, and not used to communicate with their patients.

However, I believe that social media will be an effective tool for doctors and other healthcare professionals as well as their patients.  Most appointments, whether it be at the local G.P’s office or at hospital appointments, are approximately 15 minutes long (some appointments can be even shorter than this!).  For most patients, this is not enough time to effectively discuss issues and problems associated with their particular health concern, particularly with the more unusual and complicated conditions.  In these circumstances, patients are often too aware of these short appointments, pressurised to be as quick as possible, that important details and questions may be forgotten about.  Be honest, how many times have you gone home from appointments only to remember and wished that you asked that certain question or thought “I really should have mentioned about that…”  And added to this, the long-waiting times to be able to get another appointment with the doctor – therefore, social media would be a great tool for both healthcare and professionals and their patients to converse between appointments and to get more immediate feedback when problems do arise, and before they become a real problem for the patient.

And what about those patients who may need to speak to a doctor but who may not have the ability to physically access their local doctor’s office?  Skype, could be the answer to the problem.  Recently, I read an article about this very issue – utilising Skype as a means to cut the large cost that missed appointments cost the NHS every year – you can read this article here.  As the article suggests, Skype may be a great tool when there is no reason that the patient will need a physical assessment; to be used when information and advice need to be given.

I know for me, there are often instances where I am confused or bewildered by medical stories entering the mainstream news – often stories may contradict earlier advice that has been given.  This is where Twitter can be useful – doctors will be able to tweet those articles and news stories which have more scientific merit than others, as well as providing useful context and meaning to these items.  Furthermore, the internet, although can be incredibly useful for finding information and support, the information however is not always inaccurate, so for doctors and leading healthcare professionals to remain the leading authority on medical matters, it would be useful if doctors used social media as a means to dispel myths and provide accurate health information to those who may use search engines to research reasons behind symptoms or looking for more information on health conditions.

And perhaps most importantly, social media can also provide the opportunity for doctors to listen to patients concerns and frustrations regarding healthcare and policies surrounding healthcare.  By listening to patient feedback, doctors can adequately adjust the way in which they practice medicine.

However, although social media would certainly improve the quality of our proceedings with healthcare professionals, it should also be wise to mention the disadvantages and pitfalls for using such technology.  The problems include:

  • Issues surrounding patient confidentiality – nothing is forgotten on the web, meaning that medical information on patients’ could be found with a few clicks on a search engine
  • If technology such as email or social media sites are used to converse between doctor and patient; then important medical information may be forgotten to be documented in the patients’ medical notes
  • Worries about potential legal lawsuits being pursued if wrong information is provided, etc
  • The possible blurring of boundaries between patients and doctors when using social media; would you want to ‘befriend’ you doctor on social media – them knowing what you get up to as well as embarrassing stories, etc?

These problems are certainly well-founded and may harm the doctor’s professional reputation as well as having the potential to harm patients.  I suppose we will have to weigh up the pros and cons of using such technology and any solutions that can be utilised to minimise these risks….

 

 

So, what are your thoughts on healthcare professionals using social media as a way of communicating with patients?  Are you for or against?  And why or why not?  As always would love to hear your views on the topic.

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NHBPM Day One: Why I Love the World Wide Web!

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Think back fifteen years, its 1997 and the internet was still in its early infancy and was just starting to take off.  Being chronically ill or housebound must have been really lonely and isolating – being stuck indoors with only daytime television for company…

Fifteen years on however, the internet is just another part of our everyday life, a lifeline for ‘spoonies’ everywhere; it’s a connection to the outside world, a place where we can meet and talk to others.  The internet is an invention that has meant that the chronically ill and housebound need no more have those feelings of loneliness and isolation.

We need no more rely on others to go shopping for us – it can all be done with a few clicks of the mouse, which can then be delivered to our front door.  Even those who are chronically ill and are able to go out but are easily fatigued can access online shopping and save their spoons for other chores that need to be done.

Another advantage is the explosion of social media – sites such as Facebook, Twitter, Pinterest and others are a fantastic opportunity to connect with others, or stay in contact with friends and family if you do not get the chance to see them regularly.  It’s a lifeline for those nights plagued with insomnia, unable to sleep, and unlikely to be able to due to the severity of the symptoms, before it would mean sitting alone with a mug of hot chocolate in front of the television, but since the invention of social media you can always find someone online to talk and vent your frustration with.  It has become so easy to find new friends with sites such as Facebook, and since starting this blog and taking advantage of social media; I have met and made contact with a lot of fantastic and beautiful people, each battling with different illnesses but meanwhile writing and spreading awareness for their particular cause.   I have also come to love sites such as Pinterest, which allows the opportunity to ‘pin’ those images that you love to pin boards – I often use this tool for saving certain crafts that I love the look of and would love the opportunity to try them for myself – also giving me something to keep myself occupied during those times when I am alone in the house and looking for something to do

And online health communities are definitely an advantage for those of us battling chronic illness – it provides somewhere to connect with others with the same condition, or perhaps neurological conditions in general, as an example.  Connecting with others on particular online health communities can also mean for the newly diagnosed they can find information and tips for living well with the illness from experts – other patients!  Certain health communities such as ‘Patients Like Me’ even offer the option to track your particular health condition by filling out questionnaires on how you are feeling and by detailing the severity of the symptoms being experienced.  This obviously offers many advantages, one of which is being able to easily spot any deterioration in symptoms experienced, and noting any progression in the condition, especially if it is one that is degenerative.

There are so many wonderful reasons why I love the internet, social media and online health communities – these tools for everyday life has simply transformed the lives of so many, making life more enjoyable and less isolating!

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