HAWMC 2013 Day 11: Why I love to Tweet!

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.

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!

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

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.

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

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!

WEGO Health Advocating for Another Carnival: Wrap it Up!

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!

WEGO Health Advocating for Another Carnival: These are a few of my favourite things!…

Welcome to the second post in the WEGO Health Blog Carnival. Today’s prompt says the following:

List time! Write 5-10 of your favourite things about your health community. Celebrate their uniqueness and be sure to tell us why those are your favourite things.

Today’s prompt asks us to reveal a few of our favourite things regarding our health community in a Sound of Music style!

What would be some of my favourite things regarding my health community as a whole?

Well number one would definitely be that I feel the community that I am a part of is that the people are much more understanding and less judgemental. Living with an invisible chronic illness makes you far more understanding of others and their circumstances, and less judgemental of certain behaviours or symptoms exhibited which healthy people may see as being odd. This is a really positive attribute not only for health activism but for life in general. And I believe that living with a chronic illness also teaches tolerance. Often people are suspicious and fear those who are different to themselves, those who are not congruent with the image that one holds of themselves. However, those who are chronically ill or disabled are brought together with an understanding of the difficulties experienced and which cannot be broken by those which more commonly divide – such as colour of skin, race, nationality, gender and so on. We are our own community, our own little family.

Another thing I love about the community is having to use time effectively – I used to procrastinate all of the time, always putting off chores until tomorrow. But now, as I never know how I will feel from a day-to-day basis I need to complete chores or tasks that need to be done when they arise, as I may not able to do them tomorrow. Also, comes in handy when I am able to go shopping – hated those days when Mum and I would spend endless hours trawling through different stores. This for me, and many others is now longer an option, so now am only able to go in and get what I need as quickly as possible, not wasting any time and not depleting my minimal energy. Then I have more time to spend on the things that I love (and able to complete without pain or fatigue) such as reading, writing, or simply watching my favourite feel-good film. Having time for ourselves is so important when living with a chronic health condition, important for our psychological well-being and great to do something that we enjoy during periods of remission or feeling well.

Another thing I love about my community is how everyone now embraces technology and social media. These new technologies and social media sites such as Twitter and Facebook, allows us all to stay connected with each other, posting comments of support through the bad times and send congratulatory messages during the good times. Many people assume the Internet is used for bad, and is a force for negativity and evil, such as ‘trolls’ sending messages of hate to others. However, the Internet can be used for good, it can be a positive form of communication. For me, and many others within the health community, going out of the home proves to be very difficult and so using the internet and the different social media that exists as well as support forums makes it possible for much-needed social interaction. And has an even more beneficial use if you take into account rare conditions such as mine, in real-life it may be very unlikely to meet anyone with the same condition but the Internet may make it possible to connect with the same condition. One group I participate in even uses Skype for group chats with members, which brings us all closer together and provides a more interactive experience.

The next point, I would say I love is being able to gain practical support from my health community. Often I find myself not knowing the best solution to a problem that I am experiencing; so asking others and brainstorming ways around the problem to find an effective solution which may even lead to more productive and independent life. And another great thing about being involved within the health community is the reciprocity – learning different tips and tricks on how to cope and overcome different obstacles and passing these onto others! Sharing information is so important in terms of health advocacy.

And the last thing what I love and think is great about my health condition – is that we are all unique and special in our own ways. Just like a snowflake, no two patients are alike and each exhibiting a different set of symptoms. Everyone is beautiful and special.

Hope you enjoyed the post – feel free to leave any comments….

The role of support and health communities for people living with chronic and long-term conditions…

Hey Everyone

Sorry, I have not posted for a bit but I have been unwell as my Dad has kindly given me his cold – which has made me feel very unwell and extremely lethargic.

Today, I would like to discuss the role of support groups and other health communities out there for people, like myself who have chronic and long-term health conditions.  These online support groups and communities, for me, has been a god send – as I find myself feeling unwell all of the time, as well as having the dizziness 24/7 and 365 days a year and therefore unable to really leave the house on my own, a lot of my time is spent alone – leading to feelings of loneliness and isolation which can then lead to feelings of depression.

As a result a lot of my time is spent online where I am able to talk to others out there who, although might not have the exact same conditions as me, sometimes have similar symptoms or experiences as me.  Communities or ‘groups’ even exist on social media sites such as Facebook, where in fact I am a member of a several groups, some of which are for people living with chronic and disabling dizziness.  No one, so far whom I have met online, has the exact condition as me, however, this has not meant that I find them any the less useful, or not able to get support out of them – many of the people whom I have met have become great friends of mine, and can still relate to what I am going through in terms of the dizziness as they too are going through something similar.  One of the groups that I am a member of, even have Skype meetings, giving us the chance to actually talk to one another instead of constantly typing answers at each other!!

These sessions, are something which I look forward each month with great enthusiasm – it doesn’t just give me the chance to speak to others about what I am going through with the dizziness, and to gather information and support from these terrific women but also gives me the chance to have a laugh and a giggle with people other than my parents!  Don’t get me wrong, I love my parents dearly and they are a fantastic support, but it does get very isolating just speaking with them day in and day out.

I have also found another very useful too online – an online health community called PatientsLikeMe.  If you would like to know more after reading this then please find the link in the ‘Blogroll’ section.

Information regarding the community - how it works

PatientsLikeMe was founded in 2004, and provides patients with all kinds of conditions and is basically a health sharing website for people with a variety of conditions, hence ‘patients’.  Patients are able to enter data regarding their conditions – such as the condition itself, or even multiple conditions, symptoms associated with said condition or conditions and even the treatments that the patient has taken in the past as well as those treatments that are presently being taken.  In addition, every now and again, members are also asked to complete several questionnaires regarding their mood and quality of life as well as questions regarding symptoms experienced – by answering these simple questions members create helpful charts and timelines to enable users to watch the progression of their condition over time – using the site, members can also add their care team to their profile, to keep their doctors up to date with everything.  There is an even a tool called ‘instantme’ where in 140 characters or less are able to type in on how you feel that particular day – there are 5 options to choose from – ‘very good’, ‘good’, ‘neutral’. ‘bad’, or ‘very bad’ – and then all you have to type in is why you feel that way!  Simple!  Myself, I use the ‘instantme’ tool everyday, as I find it an invaluable tool to track the progression of my conditions and to see if there has been an improvement or deterioration in my symptoms.

Using the site you are also able to find patients just like you – well I haven’t, but that’s another story, but for conditions such as MS or Depression, there are many members with that particular condition, and can even search patients with the same symptoms as yourself, as well as searching for those with the same treatments, and even search for those within the same geographical location – or can even search for those using a combination of criteria.  And furthermore, using the tools such as the symptom or treatments reports you are able to learn and find out and see what others are experiencing – as well as being able to ask questions, share tips that you have picked up along the way and to support others using the forums – which they are many of as well as through a private messaging service.  Basically PatientsLikeMe is a great social media site, like Facebook for those with long-term health conditions!!  If anyone reading this has such a condition, I would more than recommend joining – even though I haven’t found anyone else with the same condition I am still finding it a very useful tool to track the progression of my health – and can even print out ‘doctors reports’ showing the severity of my symptoms and any information that I have entered to show them how I am doing.