The Sunshine Blogger Award

Thank you so much to Cheyanne, a lovely young woman who blogs at Hospital Princess in which she shares her personal journey living with Ehlers Danlos Syndrome and its other comorbid conditions including dysautonomia and gastroparesis for tagging and nominating me.

What is the Sunshine Blogger Award?

It is a nomination given to bloggers by bloggers.  If someone nominates you, it means you’re one of 11 people whom they find inspiring and brings sunshine into the lives of your readers.  If you decide to continue to tradition, then follow these simple rules!

Rules for the ‘Sunshine Blogger Award’:

  • Thank the blogger who nominated you and link back to their blog;
  • Answer the 11 questions the blogger asked you;
  • Nominate 11 bloggers to receive this award and ask them 11 new questions; and
  • List the rules and display the Sunshine Blogger Award in your post and/or on your site

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Questions and Answers

Here’s what The Hospital Princess asked me, and my answers to them:

  1. What inspired you to start blogging?
    It was a remark by an online friend who also at the time was blogging. At the time I didn’t have a concrete diagnosis, but we both suffered from chronic dizziness and after reading some of my personal writing and knowing my story living with an undiagnosed condition she suggested creating my own blog to share my journey and to help myself and others going through a similar experience.
  2. Instagram or Twitter? Why?
    I would have to choose Twitter; I also have an Instagram account but much more active on Twitter mainly because I hate having my picture taken, always highly critical of my looks.  I also feel that I am much more eloquent with words!
  3. If you could choose another “niche” for your blog, what would it be?
    It would definitely have to be writing about books as I am an avid reader.  I have so many books but still always find myself buying more as I discover new and exciting authors and titles within the bookshops that I frequently inhabit.
  4. You can travel back in time. What age would you be?
    I would travel back in time to when I was 16 and going through a tough time at school, suffering from depression. I would give myself a big hug and reassure myself that it will be OK and that these feelings will pass.
  5. Professionally, what are your future goals?
    I have no idea.  At the moment with my health, I am just trying to get through each day.  But I would like to do more writing, either for online platforms or even get published in a magazine.
  6. Who is the biggest supporter of your blog and life in general? How do they keep you motivated?
    Of course, my biggest supporters will always be my parents. But outside of my immediate family, it would be my best friend Aisha who makes an effort, despite her own health struggles to read my writing and my blog whenever I publish something new and has even proofread my writing.  Her support and encouragement always keep me motivated!
  7. What is your favourite song lyrics? Why?
    I find lyrics in the song ‘Do You Hear the People Sing’ from the musical Les Miserables particularly inspiring and motivating.  ‘Even the darkest night will end, And the sun will rise’ is a beautiful reminder that nothing in life is permanent and the pain or the negative feelings we are currently experiencing will pass just as the night ends giving way to a new day.
  8. How do you promote your blog?
    I promote my blog through my social media channels – Twitter, Facebook and Instagram.  I also am members of various groups on Facebook to help share and promote my new blog posts.
  9. Most embarrassing moment?
    I once fell off a stage as I went up to collect an award which was very embarrassing, especially as there is still evidence somewhere as my parents were recording it!
  10. What do you dislike the most about blogging?
    It’s not so much about blogging per se, but it can be frustrating when you take the time to share the blog posts of fellow bloggers, but they don’t return the favour.  It doesn’t happen a lot, but some bloggers don’t even thank you which is frustrating as I think especially within the chronic illness community we should all support each other.
  11. How have you changed as a person since starting your blog?
    Well, I’ve certainly gained more perspective and insight into my experiences with living with a long-term health condition, have become more eloquent when describing my symptoms with doctors and other consultants, which may have helped in getting answers and culminating in a diagnosis.  I have grown in confidence as a writer and as a person.

My nominees for the ‘Sunshine Blogger Award’:

  1. Emmie from ‘Illness to Wellness: A Journey
  2. Heather from ‘Dinsoaurs, Donkeys and MS
  3. Chiara from ‘The Millennial Patient
  4. Amy from ‘Destined2Roam
  5. Ash from ‘Finding Rainbows in The Dark
  6. Em from ‘That Silver Spoonie
  7. Lara from ‘Mummy Seeing Double
  8. Jen from ‘Tripping Through Treacle
  9. Rebecca from ‘A Punk with MS
  10. Caroline from ‘PoTS and Spoons
  11. Sarah from ‘A Life Less Physical

My List of 11 Questions: 

  1. What inspires your blog posts? How do you come up with new things to write about?
  2. If you had to choose just one social media platform to use for the rest of your life, which would you choose and why?
  3. What fictional character do you most identify with and why?
  4. If you could be one person from history, who you would choose? Why?
  5. What has helped you reach acceptance in your journey with chronic illness? Or do you feel you have yet to reach acceptance?
  6. My latest blog post is about my favourite box sets to binge-watch. What was the last show you binge-watched or are currently watching?
  7. What lessons have you learnt from living with chronic illness?
  8. What blogger or bloggers do you admire the most? What have you learnt from them?
  9. Who gives you strength in your everyday life?
  10. What are your biggest struggles in everyday life?
  11. If you could accomplish anything in your future, what would it be?

Thank you once again to Cheyanne for the nomination! It’s such an honour and so lovely that you thought of me! 🙂

I Blog Because…

I was recently received a DM on my Twitter account from fellow blogger John Sennett asking me if I were interested in taking part in a campaign that he created called #iblogbecause, an initiative to spread positive messages around the blogging community.  Here is his original post on the idea for the campaign to find out more and perhaps even to take part yourself.  So here is my contribution on the reasons behind why I blog.

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In my personal experience living with a neurological condition has in some ways stolen my voice and effectively trapping me amongst the same four walls in which I spend the majority of my time.  The pain and torment that the symptoms associated with my condition creates in my life remain invisible to the rest of the world, of course there are subtle signs of a life filled with pain and illness if one chooses to notice.  But largely, the life I live with constant and relentless symptoms remain unseen, trapping me in a bubble that only I am aware of as the rest of the world walks on by.

And so I blog because it gives me a voice.  As someone who is somewhat of an introvert and not eloquent in the slightest when it comes to public speaking, I am unable to use my voice to raise awareness of issues and life with an invisible neurological condition.  However, give me a pen and paper (or a computer and keyboard) and I am able to write as some people tell me quite eloquently and to use this to write what life is like with such a condition as well as issues that affect and are important to the chronic illness community.  To have a voice and say in such matters despite symptoms keeping me from being able to leave the house.

Writing can be a cathatric experience...
Writing can be a cathartic experience…

I blog because it enables me from being able to meet others and making friends with such like-minded people and those experiencing similar realities to myself.  I have read a lot of blogs from others also living with neurological conditions or other chronic illnesses and reading their experiences and thoughts has almost mirrored by own and reminded me that although we have different diagnoses and live in different parts of the countries or even living on different continents there are more that unites us than divides us.  Blogging has allowed me to make friends and meet a wide range of different people, people who are there for me and able to lean on for advice and support perhaps even more than I had in my life before I started my blog and utilised social media as an extension of my writing.  Through writing and this blog I am able to inspire others and in turn inspire me.

I blog because it gives me a focus and escape from being ill, despite that being the focus of the blog.  Writing allows a cathartic release and escape from illness and pain.  Writing, especially blog posts that are planned, rewritten and edited before being published in the blogging stratosphere takes my mind off being ill and from the symptoms that are making themselves known.  Being able to write and have a focus beyond watching a film or a TV show, quietens the symptoms and allows me a creative outlet for everything that bothers me about living with a neurological condition.

I blog because it is something that I enjoy and above all it gives me a purpose beyond that of living with chronic illness.

HAWMC 2015 Day 1: Wordless Wednesday

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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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Spreading my wings…

As most of my regular already know, I love to write and although this very blog gives me an excellent opportunity to do so, I often wish that I could have an opportunity to write for a wider audience.

So, I am very pleased that this week, I have been published in two excellent publications.

Firstly, several weeks ago, I received an email from a journalist from PharmaTimes magazine, which is a very well-respected healthcare and pharmaceutical publication.  The magazine offers independent, authoritative and trustworthy content on key issues and topics that are of relevance for those working in the healthcare and pharmaceutical industry.  As part of the development of the magazine, they have began to interview one patient per month regarding their own views and issues that affect them as they navigate the healthcare system from the ‘other side.’  The email therefore was to ask me if I would be interested in taking part in an interview giving my own personal views on the healthcare and pharmaceutical industry.

I agreed as not only was it a great opportunity to discuss my views on a subject that affects much of my life as one piece of my identity – a patient.  It however was also an opportunity to help professionals gain an insight into the patient perspective and represent the patient population by doing so, especially as a patient living with a rare neurological condition.

The Patient File

In addition, I have again been published in yet another edition of the wonderful ‘The Pillow Fort’ Magazine.  For new readers, The Pillow Fort Magazine is an e-magazine for and written by young(ish) people affected by chronic illness.  Each issue has a different theme, and this particular issue was based around “Self-Care”.  This edition features many informative, interesting and relevant articles based around the concept of self-care from an ‘A to Z of Self-Care’, through to exercise for well-being and even delicious recipes for ‘self-care’ cocktails.

As a result I wrote an article based around self-care and holidays and how we can still take care ourselves even when away from our regular routines and everything that provides us with comfort.  This article was inspired by my recent cruise and how I participated in self-care when I felt at my worst and stuck on a moving ship.

 

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To check out this wonderfully positive and inspiring magazine and/or purchase this particular issue (or previous editions) then please do so by clicking my affiliated link below:

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Back from cruising…but writing hasn’t stopped!

Welcome to all readers new and old.

Sorry for the lack of content recently, but as some of you may remember I wrote a post as part of the WEGO Health HAWMC on how I was about to embark on a cruise; the first holiday that I have been on for some considerable time ( you can read the post here).  Anyway, yesterday I arrived back from that very cruise.  I would love to say that the experience was amazing and completely enjoyable, but unfortunately the neurological condition and the symptoms that go along with that, very much got in the way and made the holiday experience very difficult at times.  I will write a post all about my personal cruise experience in due course, but at the moment life is busy with unpacking and sorting through all of my many emails!

Anyway, just wanted to make you all aware that again I have contributed to the wonderful ‘The Pillow Fort Magazine’, which is a fun, positive and inspirational digital publication for young people suffering with chronic illness.  The premise of the magazine and the wonderful community that the editor Lizzy has established is to provide a safe, positive and fun sanctuary for those battling chronic illness to be uplifted, inspired and make the experience of living with illness a little more fun, or in the words on the website ‘make chronic illness suck less.’  Inside the magazine there are approximately 20 submissions including written articles and beautiful photography from a variety of young spoonies battling with different chronic conditions (of which I am one!).  Each page is beautifully designed as well as being unique.  It is a wonderful magazine, and one which is particularly uplifting on those bad days stuck in bed.  The articles are beautifully written and thought-provoking in the sense that it makes you look at living with chronic illness in a different way.  As an example there is a wonderful article on the similarities between various superheroes and those living with chronic illnesses.

Here is a sneaky peek at my pages in the magazine!:

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To read more of my article in the new issue of the magazine and be generally uplifted and inspired by each and every contributor then you can go and get your own personal (digital) copy of the magazine here

And please get in touch and let me know what you think of my article or on the magazine in general! Feel free to leave any comments or suggestions in the comment section below…

Acceptance Speech: I would like to thank…

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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.

The prompt reads as given:

And the winner is…You!  You just won an award and are on stage, holding your trophy.  Write an acceptance speech.  Who do you want to thank?  How did you get to where you are today?  Don’t worry, we won’t rush you off the stage!

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Wow, this is an amazing honour and so I think the first people that I need to thank is those who voted for me, as without them I would not be standing here today.

I would also like the opportunity to thank my family, especially my parents who have gone beyond the parental duty in their support that they shown me during the journey through illness, diagnosis and life after. I would like to thank them for all their help and care over the years.  For picking me up when I have fallen, for taking me to every hospital appointment, and just by being there for me during the bad times.  Just for being your caring and wonderful selves.  I appreciate you both so much and cannot express how much you both mean to me.

I would also like my wonderful and supportive friends who I am very grateful that I found, particularly Claire, Aisha, Anya and Hayley.  All of your messages, cards and gifts have meant the world to me, and have helped me during the bad times.  You girls have shown me what friendship means and also that I am not alone in the journey through chronic illness.  To Claire, thank you for all of the enjoyable and fun nights out which we have shared, they have been exactly what I have needed to take my mind off my condition and the symptoms, as well as the opportunity to have a break from being inside the house and enjoying lovely food!

My friends are definitely like stars...they make my life shine a lot brighter
My friends are definitely like stars…they make my life shine a lot brighter

To Aisha – I cannot find the words to describe exactly what you mean to me.  Finding you has been like finding a diamond.  During my childhood and adolescent, and even into adulthood, friends have come and gone.  It felt as they could not accept me as I am, and therefore I am so grateful to have you in my life and know that I have friend that I can always count on during the good times and the bad.  You have become more like a sister to me, and I look forward to our many years of friendship.

Anya, thank you so much for all of your support; not just for me but for my blog also.  We both connected with each other through our blogs; and you inspire me with your eloquent writing and all of your amazing work in the field of self-management.

And finally, to Hayley who has worked tirelessly to create a fantastic community for those affected by neurological conditions; I am so blessed to have found a place where I belong, and thank you for making me a part of it and giving me a sense of purpose. And to every person who has contributed to Neuro Nula, whether it be through sharing your own personal experiences and stories of living with a neurological condition or connecting to the community via Twitter, each and every one of you are inspiring; thank you for shining a light on what it is to live with such a condition as well as making me and other’s like me feel less alone.

I should also thank all of the readers of my blog ‘My Brain Lesion and Me’.  Thank you everyone who has taken the time to read, share and comment on my posts, as well as all of my lovely and loyal Twitter followers.  Thank you for your kind and generous words, and a special thanks to everyone who has sent me words of encouragement and support during the darkest moments, or just have taking time out of their day to ask how I am feeling and generally making me feel less alone in the world.

I must also thank to all of the doctors and consultants that I have seen over the years; unfortunately there are too many of you to mention personally, but those doctors who believed me and diligently looked for the underlying cause of my symptoms.  For so long, I believed that I was strange; that everything I was experiencing was in my head and after all of you took the time to perform tests and take a thorough history, all of you took some part in arriving at the eventual diagnosis.  I now know that it is not in my head; and that is down to all of your hard work.  Thank each and every one of you for your patience, diligence and support. We now know that there aren’t many options in terms of treatments; no cure, but that does not stop you trying for me and attempting to give me a better quality of life.

And lastly a thank you to my condition.  Yes, it may be strange thanking something which makes my life extremely difficult, and as a result have to live with such severe symptoms on a daily basis.  However, despite this I would like to thank the neurological condition for making me stronger; for making me aware that with perseverance I am able to overcome obstacles and challenges that are placed in my way.  I have found an inner strength, that I didn’t know I possess and perhaps if it wasn’t for this condition I would not have found the things that I am good at, such as writing.

Each and every person I have thanked has shaped the person I am today, and without all of you I would not be standing here today.

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Writing for my health…and my life

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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:

Why I write…Tell us why you write about your health.  How long have you been writing?  What impact has it made on your life?  Write for 15-20 minutes without stopping.

Why do I love to write about my health and my life with it?  Well, for starters I would like to think that writing is something that I am good at; when living with a health condition, particularly one which is rare and unusual it is therefore only natural to want to raise awareness of the particular condition with which you have been diagnosed.  For some people, raising awareness may involve organising events, or even speaking in public regarding their life and their condition.  However, as I am an introvert and extremely shy, I therefore do not feel comfortable with public speaking and feel much more comfortable in expressing my thoughts and feeling on paper rather than speaking them out loud.  Writing allows me to process my thoughts and feelings regarding my life and the condition that is a large part of it – writing is a very cathartic experience by writing down all my thoughts and feelings, especially the bad.  Writing enables you to process your emotions, letting you to let off steam and providing a safe emotional release from the pain and anguish that often accompanies life with a chronic illness.

Another reason why I decided to start the blog and utilise social media as a part of documenting my journey with living with a neurological condition was to connect with others.  For such a long time, I felt so lonely and felt as if I was the only person in the world experiencing what I was going through and therefore, I reached out to the health community in a bid to gain support that I could be provided with by the medical community.  Friendship and knowledge from others experiencing chronic illness like myself was also something that I wanted to find through the health community as my world had gotten smaller, and as I am unable to get on my own, it is therefore difficult to meet others in real-life.   Furthermore, I also thought that keeping a blog, would occupy my time and give me a project that would help with the boredom and monotony that comes with living with an illness and being stuck in the house for long periods as a result.

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But, also I thought it would writing about my experiences with a chronic illness and disability, I could help and do my little bit to educate people on the issues that me and others in a similar situation face.  For example, that not all disabilities are visible.  I have heard  great many stories of people with ‘invisible’ conditions having abuse thrown at them, for example when using disabled parking – even though they had the necessary permits and had a legitimate excuse for using the disabled parking spaces.  This particular anecdote is extremely common amongst those with invisible disabilities, and have even experienced this myself, which I have written about in a past blog post (see ‘Becoming Visible in an Invisible World…’)

 

A fantastic benefit of using social media as a means of communicating about chronic illness
A fantastic benefit of using social media as a means of communicating about chronic illness

Another story I read, concerned a gentleman who suffered with Ménière’s Disease, a vestibular condition which produces similar symptoms which I suffer from – dizziness, poor balance and co-ordination, and who was arrested for driving under the influence of alcohol after he was unable to walk in a straight line when asked to perform a sobriety test.  Therefore, it is important for those, like me suffering from a  chronic and life-long condition to stand up and speak out and to make people understand that just because a person may look fine and ‘normal’  it however does not mean to say they are – their disability or illness may be hidden underneath what we may be able to see.  This reminds me of the many  times when I have gone such as to the doctor’s for an appointment, where I have had my crutch with me and having a few people stare at me, as if they were judging me and wondering why on earth I was using such an aid as I didn’t have a broken leg and looked perfectly healthy.

To conclude, writing and blogging about chronic illness provides an excellent means for an emotional release of the emotions that accompany life with a chronic illness, to connect with others who are living in a similar situation and to educate others’ on the issues that we often face because of chronic illness and disability.