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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.

Monday April 7th: Your Hero 

Everyone has someone they look up to – a person they go to for advice, an individual you admire or idolise.  It could be your partner, a family member, coworker, or someone famous.  Who are they and what makes them awesome in your eyes?

This is a tough question.  I am surrounded by a lot of amazing and inspirational people, many of whom I look up to and admire – my Mum, my friends Aisha, Anya, Hayley, Claire for examples.  It was hard to choose between these fantastic people, and so instead I have opted to discuss a well-known celebrity whom I both respect and admire.

Angelina Jolie.  A woman who has many facets to her personal identity – a wife, mother, woman, actress, UN ambassador, and now health activist.

Angelina Jolie should not only be admired and respected for her incredible acting career, not only playing iconic characters such as Lara Croft and Maleficient, but also won many accolades for her performances in films such as Girl Interrupted, Changeling and Gia.

Angelina Jolie in one of her most famous roles, Maleficient
Angelina Jolie in one of her most famous roles, Maleficient

However, it is her work off-screen why she has become a woman many have become to respect and admire.  Her extensive work as a humanitarian, and US Ambassador has taken her to many countries around the world, witnessing the devastating effects of conflicts and natural disasters.  She has met many people who have been affected by such events, such as refugees who had been displaced due to conflicts in counties including Sierra Leone, Tanzania, Cambodia, Syria and Iraq.  Her work has also seen her meeting and helping those who have been personally affected by natural disasters, including earthquake victims in Haiti.  And her recent work, and visits to places such as the Congo with MP William Hague helped raise awareness about the use of rape as a weapon in conflicts which included a passionate and inspiring speech at the 2013 G8 Summit in London.

Angelina Jolie, the UN Ambassador
Angelina Jolie, the UN Ambassador

Her work however has not just included helping highlight the effects of events such as war and natural disasters, but the selfless and inspiring woman has even set up and financed many charitable organisations including the Maddox Jolie-Pitt Foundation which is dedicated to community development and environmental conservation in Cambodia, where her eldest son was born and whom inspired the charity.  She has also helped fund projects which helps to fund education for those children affected by man-made or natural disasters, and those organisations committed to providing legal aid for immigrant children living in the United States.

However, it is  recent events in Angelina’s private life which have really helped win the affections of many around the world.  In 2013, Angelina Jolie revealed to the world that she had undergone a double mastectomy due to an extensive family history of both breast and ovarian cancer and having learnt that she had the BRCA1 gene mutation that dramatically increases a person’s chance of developing cancer.  In an essay for the NY Times, Jolie wrote candidly about her decision to undergo the double mastectomy and hinted at a future operation to remove her ovaries (which she underwent earlier this year).

Not only was she incredibly brave about openly discussing her decisions for undertaking such radical measures to prevent her risk of developing breast and ovarian cancer but in doing so has helped, and will help many women going through the same reality that she was.  In the piece for NY Times, Jolie encourages women to take control over their health issues, whatever they may be, and to seek advice, learn about their options and make the decision that is right for the individual.

In her piece, she writes ‘knowledge is power’.  And it is this principle that is popular among many health activists and those  working within the self-management field.  Self-management enables and encourages patients living with a long-term health condition to take a pro-active role in managing their own health and well-being.  It is an area within the healthcare field which puts the control back into the hands of the patient.

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It may however be a field in which not many patients are aware of; many report not knowing where to seek out information regarding their own health and well-being and as a result may still look to their healthcare professionals to give out information and advise them on the right course of treatment for them.

By speaking out so openly and honestly and encouraging everyone to be proactive and take charge of their own health, then it is perhaps more likely for it to happen, as history suggests.  For example, after Jade Goody spoke out after her cervical cancer was diagnosed as terminal, the number of women opting for a cervical smear, which detects it, increased dramatically.

For Angelina Jolie to use her celebrity status for good and a positive influence for many makes her a true heroine in my eyes.

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Welcome to the first day of April, which means just one thing – the beginning of the WEGO Health, Health Activist Writer’s Month Challenge 2015!  Again I will be participating in this writing challenge for those living with and advocating for those with chronic health conditions based upon given prompts.

Wednesday April 1st: Wordless Wednesday

Since this is the start of HAWMC, post a picture that shows how excited you are for the next 30 days.  We always love a good Health Activist selfie!

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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 final prompt reads as follows:

You did it!…You’ve crossed the #HAWMC finish line.  Recap the past month for us.  What did you enjoy, what didn’t you enjoy?  Favourite prompt?

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Well, I have made it!!  I have managed to write ALL 30 posts in 30 days!  And what a journey it has been – one full of ups and downs.  Celebration of triumphs over certain neurological symptoms in the post ‘I went and I conquered!‘ and reflecting on the tough times as a result of chronic illness in posts such as ‘Dear Rhiann (at age 16)‘ and ‘Escaping the monotony and boredom of chronic illness…‘.  Some posts were deeply personal and regarding my own life and experience with chronic such as the letter to my younger self, ‘Reflection of a life with illness…‘ and ‘Lesson Learned! Don’t walk down the stairs with trembling legs…‘ whilst other posts explored what is it like to live with a chronic illness in general in posts such as ‘Clichés often heard when dealing with chronic illness…‘, ‘The representation of chronic illness on TV…‘ and ‘Rules for dating a Spoonie…‘.

Although there were a lot of difficult aspects of completing such a monumental task such as writing everyday for 30 days, it has been a challenge that I most enjoyed.  The challenge allowed me the opportunity to focus on something other than on my symptoms and feeling unwell; it gave me focus and also gave me a purpose.  Another aspect of  the challenge that I also enjoyed was the opportunity to connect with other bloggers and learn more about their lives and experiences with chronic illness.  Although many of the blogs that I read or have read during the course of this writing challenge are about all different types of chronic conditions, it is surprising therefore reading others’ experiences and thoughts regarding living with chronic illness and seeing my own reflected in their words.  It shows that we don’t have to find other people with the same diagnosis to find support and a connection with other patients.  I have particularly enjoyed reading the wonderful and eloquent writing of Jessica Gimeno on her lovely and inspiring blog ‘Fashionably Ill: The Sick Woman’s Stylist‘.  I have also had the pleasure to meet a new blogger named Kerry Wong who has a wonderfully positive and inspiring blog named ‘Float Like a Buttahfly‘ and finally I have discovered a very informative and interesting blog about living with an Autistic Spectrum Disorder at ‘What’s the ASDeal?

I didn’t dislike any part of the challenge, however there were aspects of the month that were incredibly difficult, such as dealing with severe symptoms whilst needing to write posts.  Not easy when living with fatigue and you are constantly tired.  To help this, I planned the posts ahead of time, which came as a real help especially as some days I was unable to get out of bed due to the severe weakness in my legs and as the posts for those days were already written I was just able to proofread them and then hit the publish button from the comfort from my bed.  In addition, some of the posts were also similar or even exactly the same as prompts from previous years of the Health Activist Writer’s Month Challenge.  An example of  such a prompt is the ‘5 Challenges and 5 Small Victories‘ and the reasons for why we write.  It was therefore difficult to find new ways of answering these particular prompts without repeating what I have written before.

I have to admit that I am not able to choose a favourite post as I enjoyed writing them all.  The one post that did get the most traffic though was ‘Clichés often heard when dealing with chronic illness‘ so perhaps that was the readers favourite post.  I did particularly enjoy the prompt that asked us to write an acceptance speech – I really liked writing the post as it allowed me to thank everyone who has supported me and helped me during my journey from diagnosis of the neurological condition to where I am now.  I even showed this post to my Mum whom I mentioned in the acceptance speech, and she even teared up a little so it must have been well written and a wonderful post.  Which post from the last 30 days were your favourite?  I would love to hear your thoughts on the whole challenge!  Please feel free to add any comments, messages or suggestions below…

 

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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:

“If I could do anything as a Health Activist…” 

Think big today!  Money/time/physical limitations are no longer an issue.  What is your biggest goal that is now possible? 

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At the moment, as some of you may be aware, I attend a couple of social groups twice a week.  These are open to everyone whether or not they have a chronic illness or not.  The majority of the people who currently attend are middle-aged, and am by far the youngest person there!  However, I do not mind this, and thoroughly enjoy the company when I attend the groups.

However, if there were no limitations placed upon my life, especially, the limitations that my illness places upon me, I would love to start a group specifically for younger people with chronic illness or disabilities; this will not only allow me to start a group that would support others that may experience problems associated with illness and disability such as isolation and loneliness but will also allow myself to meet others who are closer to my age.

This group would not only allow the opportunity to meet up and talk to others but I would also aim to apply for funding for trips to local sights and other amenities.  In my own experiences, my illness and disability has isolated me from my peers, and have often kept me inside of the house, unable to go to places which may be of interest to me.  So, allowing the opportunity to go on trips will break the isolation for myself and many others.

It has also been an idea of mine for some time, to also start a regular support group for people with dizziness problems like mine.  Many people in my life, as best as they can, try to understand what it is to live with constant dizziness, but as we all know, it is very difficult to understand something that you have never experienced.  So, it would be great to meet others, that are also living with dizziness for support and understanding, as well as gaining tips and coping strategies from each other!

And if money was of no issue, perhaps setting up a charity for those living with neurological conditions; a charity that aims to provide support and resources for a wide variety of neurological conditions that may not be covered by other specific neurological charities (such as MS Society UK).  Living with the condition like I have, a long-standing brain stem lesion, I have found that it is extremely difficult to find a group or charity that fits my specific diagnosis, and therefore, it can even be more isolating as I have no idea which charity or organisation I can turn to for support and guidance.  Wouldn’t it be great, therefore, to have a large general neurological based charity that can give advice, help with resources and support for anyone living with a brain condition – a place where anyone living with a neurological condition can belong.

It would be great to leave a long-lasting legacy after I am no longer here….