HAWMC Day 25: Word Cloud

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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 given prompts.

Saturday 25th April: Word Cloud 

Use Wordle to make a cloud full of words that come to mind when you think of your blog, health condition, interests or community.  Pro Tip: Use a thesaurus to make the branches of your ‘tree’ extend further.

Well, again this has been a post that I have completed before.  In previous years, I have used the opportunity to share all the words that I associate with myself and the neurological condition that I live with.

This year, therefore, I have decided to share the positive words that I personally associate with the spoonie community.  A community that I have personally been involved with for the past three or four years.

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A Perfect Sunday Dinner Party …

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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:

Sunday Dinner…Who are 5 people you’d love to have dinner with (living or deceased) and why?

I don’t know about all of you, but Sunday Dinners are possibly the best family dinner of the week.  Every Sunday, my small family and I make the effort to sit around the dinner table and eat our dinner together. So who would be my favourite dinner guests that I would enjoy a lovely Sunday dinner with?

As a Sunday dinner is a time to spend with people who are important to you, I have therefore chosen the following people:

  1. My best friend Aisha
  2. Another great friend Anya (blogs over at ‘The Patient Patient
  3. Another great friend I have made along the way of my journey with chronic illness Hayley who has set up the fantastic community over at ‘Neuro Nula
  4. My Mum
  5. A great friend Claire who I regularly see IRL (in real-life)

A lot of people, I am sure would choose favourite celebrities whom they admire or those who they find attractive, I however, wanted to choose people whom I know and have supported me throughout my journey with illness.

Each of the people on my list above, and have all helped and supported me in very different ways.  Of course, my Mum is a person whom I see everyday, and share many meals such as Sunday dinner.  However, she is one person whom I would immediately choose for my dream dinner party, as she is a person I adore and admire.  She is a fantastic Mother, and a person who always supports me in everything I do, as well as doing things to help me when my condition is very bad, and does so with no complaints.  But more than that, she is a fun and wonderful person.

Mum is a wonderful carer who always looks after me; even sometimes neglecting herself
Mum is a wonderful carer who always looks after me; even sometimes neglecting herself

Aisha, Anya and Hayley are all people whom I have met on Twitter, however, although we have no met in real-life (but would love to if the opportunity arose) it does not make them any the less great friends.  All these girls have experience of illness themselves, and so they are a fantastic support system to have in place.  But most of all, I really appreciate the support that they have shown, and the friendships that we have developed mean the world.  Aisha is the most amazing friend that I have ever known; despite living with chronic illness herself, she nevertheless always makes the effort to check in on me to see how I am feeling, and is constantly thinking of ways to ease the symptoms that I am experiencing.  Furthermore, I will never forget the most beautiful bouquet of flowers that arrived at my house on my birthday from her.  These flowers instantly put a smile on my face and made the day so special.  I cannot express how much she means to me.

Beautiful flowers from the most wonderful friend :)
Beautiful flowers from the most wonderful friend 🙂

Anya is another wonderful friend who has always supported both me and this blog; and when I am experiencing a bad flare in my condition she sends me a lovely message on Twitter.  Receiving a message on the bad says really helps, and although cannot ease the symptoms, it does however remind you that you are not alone in this journey with chronic illness.  And furthermore, I will never forge the lovely cards and packages that have arrived unexpectedly on my doorstep  – a lovely gesture and something which always brightens the day and puts a smile on my face.

Then there is, Hayley, whom I have gotten to know through her project organising a community for those with neurological conditions.  We have been friends for a short time, but I will always remember the support that she has shown in not only me but also the blog and my writing in general.  Furthermore, she has also trusted in my judgement and asks my opinion on aspects of the Neuro Nula community, and has trusted me in the social media aspect of the community.  She is a friend that has made me feel valued given me a purpose in life, and for that I can never thank her enough.

And finally Claire – she has been the most wonderful and generous friend.  For example, she invited me to stay with her and her family whilst my parents were away for the weekend.  Furthermore, I will always cherish our nights out, mainly to Harvester’s and the wonderful meals out which we have shared.  Often, these meals have come at exactly the right time; when my life with my condition and have been tough, and just being able to get out of the house, with a fun and supportive friend has been exactly what I have needed.  Me and Claire share such a great laugh when we go out together, and really appreciate the ability to do so and be able to forget all my troubles and to some extent the symptoms that I live with, even for a short time.  Thank you Claire.

These five women mean the world to me and there is no one else in the world who would make a dinner party more wonderful than them ( no, not even Tom Hiddleston!).

HAWMC 2013 Day 25: What I have learnt from other Health Activists!

 

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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:

Share something you learned from another Health Activist (that everyone should know!) 

For this particular prompt; I didn’t just want to single out just one health activist because I have learnt so much from every health activist and blogger whom I have had the pleasure to come into contact with either through the blog itself or my Twitter account.  Each of these amazing writers’ and health activists have so much knowledge to share to everyone.  Obviously, the main advantage is that through reading others’ blogs, I have not just learnt their personal stories and whom they are as people, but have also gained a breadth of knowledge on a variety of different conditions.

However, by doing this and particularly after taking part in the ’12-12-12 Project’ over at Abledis.com and reading all the amazing stories of all the fantastic, and inspiring stories, it dawned on me how similar the experiences are for everyone who are chronically ill.  Regardless of the diagnosis; there are common themes that seem to be universal for everyone battling chronic illness; examples of these include:

  • Loneliness 
  • Fatigue
  • Pain
  • Sadness/depression
  • Frustration
  • Lack of understanding from GP’s
  • The same old responses by others’ such as “But you don’t look sick!”

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Before starting on this blogging journey, I often felt lonely, isolated and down regarding my diagnosis and not finding anyone else with the same diagnosis.  However, this is  not the case anymore, as I found a large number of new friends; all with different conditions or disabilities.  Despite that, however, I have found we still have so much in common regardless of our diagnoses, and the support and camaraderie have been amazing and have gotten me through all the bad days; and the times where I have been low.  Christine Miserandino and the ‘Spoon Theory‘ is an excellent example, how a simple analogy can be used to describe the experiences of chronic illness for many – regardless of people’s diagnoses, the ‘Spoon Theory’ is one which everyone living with chronic illness can relate to.

So, if I was to share any advice to others who may have been recently diagnosed and are feeling low, and perhaps are lonely and isolated, then I would tell them don’t be – there are plenty of support online, on Facebook, or Twitter that can help regardless of gender, location, race, nationality or even diagnosis!  Seek out all ‘spoonies’ and gain support from some amazing and caring individuals!

NHBPM Day Ten: To declare or not to declare? That is the question…

Welcome to the 10th post of the annual ‘National Health Blog Post Month’!!  One of the prompts for today, really caught my eye and thought it was a thought-provoking topic which could spark a lot of debate.  And the question is this:

“Should people post about their (or loved ones) health on Facebook?  Why/why not?”

So, what do you all think about the topic?  The immediate response, I thought was, “Well, if someone wants to post their health status on Facebook, then it’s their personal choice, right?”.  But, lets’ not all forget that once is something is on the Internet, and on social networks such as Facebook, it’s there forever; information that cannot be taken back or deleted.  I am sure that many people would not mind this, but just think that anyone in the future will be able to find this information when searching their name in a search engine.  Future partners, future children, even future employers. Perhaps, it doesn’t matter about future family members, but it may be that future employers finding about someone’s health status is a negative aspect of using Facebook to discuss health issues – employers may be unwilling to employ someone with a chromic illness; worried about the time they may need to take off, not being able to be efficient as someone who is healthy (this is of course, not always the case, but are often preconceptions that many people make, unfortunately).

Personally, I choose not to disclose a lot of my health issues and what I am going through daily on Facebook, as many choose to do.  I post links to blog posts, and little bits of information but instead I choose the privacy and security of support groups that I have found on Facebook.  These groups are completely private; and so anything that I choose to share in these groups are not added to my timeline.  This is my preference over adding comments regarding my health status and details of my health condition to the status bar within my Facebook Timeline, as for one it is completely private, and only those who I choose to share these details of my condition.  This is partly as there may be some people whom I am friends with on Facebook that I do want them knowing everything regarding my illness – the worry that they will share details of my condition with others, gossiping about me behind my back.  And then there’s Facebook ever-changing privacy settings – in the past I have had messages from friends that my privacy settings has changed so that their friends were able to see some of the posts that I have sent them after replying to their often question “How are you doing?”.  I mean, would you want strangers knowing the details of your health condition and illness?  Judging you when they don’t even know you?

But on the other hand, those who do write and share about their illness online who do fantastic work, and not only is it an outlet for the frustration and stress that living with a chronic illness causes, but it also helps others that are also  going through something similar themselves, and whom may feel lonely, like they’re only ones that are living with a particular condition, or perhaps are yet to be diagnosed and are looking for support from others – there are plenty of health activists out there who have gone many years searching for that definitive diagnosis – and there are still many more who have yet to be fully diagnosed.  Facebook and other social networks like it, are a fantastic tool for being able to find support, and network with other patients to not only find support but can learn from them about treatment options and so on – after all knowledge is power!

At the end of the day it is up to the individual whether they disclose their chronic illness or health conditions on sites such as Facebook, there are certainly pros and cons for both sides of the argument, but I would definitely advise to be careful about the information that they disclose and to also be vigilant regarding their privacy and security settings so certain information do not fall into the wrong hands!

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….