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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:

Comment! Pick someone else’s blog post and write a comment to them. Write that comment as your post for today and link them back to let them know you were inspired

 

Blog Post: Shipwrecked from ‘Chronically Creative’

In my early teenage years whenever I was bored (and attempting to avoid homework), I’d sit at my family’s communal computer and wait for the animated screensaver we had installed to pop up. Sometimes I would let a good half hour slip away watching a shipwrecked, disheveled cartoon man fighting to survive on a deserted island while awaiting rescue. I watched him catch fish for food and climb trees to collect coconuts to drink juice from. I watched his fruitless attempts to build a life raft from washed up planks of wood leave him drained by disappointment. I felt his frustration when he couldn’t get a fire going. I saw the SOS messages sent out- desperation packed in a bottle and tossed into rough seas, with a smidgen of faith that the cries for help would reach populated shores.
Whenever a plane happened to pass over the island, I watched this cartoon man’s hope soar as he jumped up, waved, and welcomed the possibility of rescue, only to have it plummet with the sadness of still remaining unseen. The days were long and lonely. Sometimes the sadness and disappointment got the better of him, but despite the harshness of the sun’s heat, he kept picking himself back up and letting the hope of being rescued one day wrap tightly around his heart. When it seemed he had exhausted all options, he would sit and dream of a life free from the limitations the island imposed. In the dark of the night he would lay down and stare at the stars, believing for a better day.
As I sat down to put pen to paper the other day and attempted to empty my mind, the memories of this screensaver flooded back. In that moment of contemplation, I realised that what played out on that computer screen, metaphorically speaking, describes what life with chronic illness is like a little.
In the pitch black of night, stormy seas have rendered me shipwrecked. Now I’m stranded on an island with day time temperatures akin to the sweltering Sahara, lost in bleak and dismal emptiness. I feel lonely. I feel scared. I feel hopeless. I feel disconnected. I feel depressed. I feel isolated. I don’t feel like my life has purpose and meaning on this island. I am just doing what I have to do to survive and get by. I am barely living. The mundaneness and monotony on this island is terribly unfulfilling.
My ship lies broken in pieces half-submerged by shallow waters, a constant and frustrating reminder of its uselessness. I try and build a life raft but I keep getting splinters. I try to keep on going but I can’t keep the planks of wood together. I try to get myself back to normal life, but my plans and ideas keep sinking. I feel so stuck. Am I ever going to get off this island? When am I going to be able to get back to normal life?
Just like cartoon man pinned his hope on a passing plane, I too get my hopes and am let down. I hope that a new drug, a new diet, or a new doctor will be able to throw me a lifeline. Though time after time I am left bitterly disappointed. Sometimes my cries for help go unanswered. Sometimes people passing by are too busy to notice that I am struggling and need some extra support. Sometimes the bad days get the better of me. The loneliness, the frustration, the pain, the exhaustion it just gets too much.
However, when things start looking bleak and my heart is overwhelmed, I hold onto hope a little bit tighter and dream bigger. I explore and discover new things. Exactly like that cartoon character who I sat intently watching all those years ago.
So, I sit and I dream of a life free from unrelenting pain and crippling fatigue. I dream of all the things I will do when I’m finally better. I dream of travelling, writing a book or two, getting a degree, starting a business, falling in love and having a gorgeous country wedding.
I dream of setting sail again, getting back on course and heading off on wonderful adventures.
My ship may have sunk and it may seem as though there is no escaping this island, but help is on its way. Help is out there somewhere. Someday soon, I’ll have a brand spanking new ship, but until then, I just have to sit in the sand, be patient and keep on dreaming and believing.
Thank you sharing such a wonderful post. I very much enjoyed reading it. I loved the metaphors! And I particularly enjoyed the comparison between the computer screensaver that you used to watch and life with chronic illness. As I was reading the post, the more I found that I was able to relate to your words – yes, you are right, living with chronic illness is very much like being shipwrecked on a deserted island. And the body being compared to that of a broken vessel. As you mentioned, being shipwrecked is often lonely, isolating and hopeless – the same feelings that many people live with on a daily basis alongside chronic illness. Even more, the condition I live with – a long-standing brain stem lesion is rare, and after spending a lot of time in various hospital outpatients, seems to be also untreatable. Because the condition is rare and unheard of, also means that I have not been able to find anyone else, online or offline that has the same condition.
So, it seems that my health condition has also drifted me out to sea, resulting in me washed ashore a deserted island in which I am isolated and alone and with no way off the island. No resources for my condition; no organisations that I can turn to for help or support – just like being deserted on an island with no resources to be able to find a way off the island or even for survival.  And resources that may be helpful for finding a way off the deserted island (or in terms of chronic illness – treatments) only ends in disappointments or further problems (i.e. unwanted side effects).
I can understand and relate to your frustrations regarding being let down by doctors, and promising new treatments only for them to end in disappointment and further unanswered questions.  So many times, I have gone to the doctors or hospital consultants hoping for support or any further help that they can offer only to hear those words “I’m afraid there isn’t anything that we can do….”  Does feel like slowly sinking in a wreckage; barely keeping my head above the rising water.
Also, I love how your post also reminds us the importance of remaining positive despite the chronic illness; despite being stuck on the deserted island.  How important it is not to let the illness rob us of our dreams or aspirations, as often it is these dreams and aspirations that get us through the dark times.  The belief that all the answers and help is out there somewhere; and someday the help will come and rescue us from the island; from our illnesses.
However, more than this, your post provides an excellent way of describing exactly what it is like to live with a chronic condition daily to someone who is healthy. Often, it is difficult, to understand another person’s point of view, decisions or even their way of life if we ourselves had no prior experience of that particular situation or had no relevant information regarding the situation. People, in my life therefore have a very hard time in trying to understand what it is like to live with the symptoms that I do. Your post, however, uses a fantastic and simple metaphor in order to share with ‘healthy’ person the struggles and difficulties that chronic illness places on our daily lives each and every day. Okay, the ‘stuck on a deserted island’ isn’t a situation that many people have faced, but thanks to television shows such as ‘Lost’, it is one that is much easier to imagine the experience of then that of a rare condition like mine!If someone again asks me to explain the experience of living with a chronic illness then I will certainly signpost them to this incredible powerful post! Well done!

 

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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:

Thank a few of your fellow Health Activists for what they have done.  Call them out by name or twitter handle.  Share your love!

Ever since I began this blog back last January I have been blessed to have met some wonderful people through the blog and twitter.  This gives me the most wonderful opportunity to thank some of them who have made the most impact; whom have been inspirational; and those who have not only given me support, but have also supported so many others.

The first person I have to thank is Marissa (@marissaabledis) who was the first person who inspired me to start the blog; as well as given me the confidence, and for always supporting me in everything that I do.  As well as this, I would also like to mention her outstanding work last year for her fantastic ’12-12-12 Project: 12 Months; 12 Journeys; 12 Lessons’ series, in which I was honoured to be a part of.  In this project, Marissa highlighted various chronic conditions, educating herself on all them as well as through a podcast learn about the person’s journey with the condition.

As well as all this, Marissa is a fantastic advocate for those living with chronic dizziness; and is a great supporter of everyone living with dizziness.  Soon she will be embarking on a series of podcasts with a friend of hers about living with dizziness.  The series will be called ‘The Spin Sisters Podcast’.  The details can be found on their Facebook Page .

Another health activist who I really admire is Pamela (@dystoniamuse) and I truly love her blog ‘Chronicles of a Dystonia Muse’; it’s a light-hearted blog which chronicles Pam’s experiences with a neurological condition called Dystonia.  Pam is a true advocate for patients with Dystonia; and does a lot of work to bring awareness of the condition as well as supporting those already diagnosed.  Not only is her blog fantastically well-written; but Pam has also become a great friend and supporter.  Pam also makes the effort to comment on many posts that I have written, all of which complimentary.  I really appreciate the support and care Pam has shown me, and this is a brilliant opportunity to thank her, for her support and let others know of her great work as a health advocate.

Another health advocate that I would like to acknowledge is that of another good friend; who also helped set the ‘Spoonie Book Club’ that I am a part of, is Anya from the brilliant blog ‘The Patient Patient‘.   Anya successfully advocates for herself and others living with long-term health conditions.  Anya mentors others living with long-term chronic illnesses as part of the Expert Patient Programme as well as talking to medical students on the patient perspective of the biopsychosocial model of disease, which can only benefit all patients as newly qualified doctors reach a better understanding of what it is like for us all living with chronic illnesses, leading to better understanding and treatment from the medical profession.

And lastly I have to thank all those involved with the upcoming magazine – ‘Unseen Magazine‘ – a magazine for all those living with chronic illness; attempting to improve the lives of everyone battling long-term health conditions.  They really deserve so much recognition for their work, and for giving us all living with chronic illness a voice, and providing us with something that we can relate to.  And a special mention to the magazine’s editor Aisha who have not been another great supporter of mine but has truly become a special friend too.

Other blog and health advocates who are worth a mention:

Kim – ‘Hope Whispers‘ – a great blog chronicling life with a rare liver disease, Budd-Chiari Syndrome

Sarah Levis – ‘Girl With The Cane‘ – another great advocate for those with disabilities.  Sarah uses her experiences with acquiring and living with the effects of physical disability as well as her work with those with intellectual disabilities, to approach and write regarding disability advocacy, education and associated issues in her fantastic blog.

 

Who are some of your favourite health activists or bloggers?  Share the love and comment 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 is as follows:

Write a health acrostic for your condition, hashtag, or username! (acrostic = a poem where every letter of a word serves as the first letter of a word or phrase i.e. DOG = Digs Others’ Gardens)

 

This has actually been quite challenging for me as I have never written an acrostic poem – and has even been years since I have written a poem…but will give it my best short!  Here it goes!:

Brain is at war,
Ravaging my mind
As well as my body, weakness overwhelming my limbs
It causing my world to endlessly spin
Not counting the endless falling 

Spastic Paraparesis affecting my legs, often sends me
Tumbling to the floor; unable to rise
Enslaved, trapped in this body, not even 
Medications can fix those lines that inflict my brain

Lying does not even cure the spinning
Even when my eyes are closed 
Spinning joins me in my sleep
In dreams, my world is still in motion
Out those damn scars; those lines that fracture my brain; those
Never ending scars that affect my world around me so

 

What did you all think?  A good first attempt?  Feedback always appreciated…comment 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 is as follows:

If you could go back in time and talk to yourself (or your loved one) on the day of diagnosis, what would you say?

Getting a diagnosis for me, was bittersweet, on the one hand, I felt relieved – relieved that all the tests and hospital appointments; relief that in fact all the problems were not just “all in my head” as I was told so many times before by a number of doctors. It felt as if a huge weight had suddenly been lifted from my shoulders; all the symptoms that I had been experiencing had finally been validated by the medical community – finally I had proof. Many people hate labels, however labels can be useful – labels can bring people together and give a sense of belonging as well as the knowledge that there is a label and name for what you are experiencing.

On the other hand, however, here I was being told the diagnosis – a long-standing brain stem lesion. A condition, which as the name suggests is life-long; not curable and furthermore was told that there was nothing that could be done in terms of treatment. This, as you can imagine, is disheartening and frightening. The first thought that goes through your head is “Well, that’s my life over!” At that time, the symptoms were bad that they were leaving me unable to work, and if the condition was one in which was life-long then does that mean I’ll never be able to work? The situation I was finding myself in felt hopeless; as if I no longer had anything to look forward to.

So, if I was able to go back in time and talk to myself on the day of diagnosis, I would tell myself as bleak as things look at that moment – it does get better. I will tell myself all the wonderful achievements that I manage to achieve – completing course, starting a blog, asking to write articles for various websites, and even going to help set a group for those with illness and disabilities and becoming secretary of that group.

As I remember, at the time of the diagnosis, because of the severity of the symptoms I was unable to go out. Even now, I am unable to go out unless I was accompanied by another person, however back then the amount I spent outside of the house was very minimal as my parents worked and there was no one around to take me out. Therefore, after being diagnosed I was afraid that my life would involve staring at the same four walls everyday, stuck inside with just the dog for company. If I was able to return to the day of my diagnosis, I would be able to tell that girl sitting there that her life didn’t have to be that way – she could get help from Social Services and with the help of direct payments be able to employ a personal assistant to help her get out into the wider community and be able to do all the things that she wanted to do – be able to choose her own beauty products, shop for herself instead of relying on her parents or internet shopping, as well as going to the cinema or swimming. All of the above which I am now doing and enjoying every minute! Now I feel I do have a purpose and with a little planning am able to do all those things that I had wanted to do but felt was unable.

At the time of the diagnosis I also felt lonely – as if I was the only person going through all of what it was I was experiencing. If I could go back and speak to myself on the day of diagnosis I would surely tell myself that I will eventually find friends; friends both online and offline who although do not have the same diagnosis but nevertheless understands what it is like to live a life with illness. Would also tell my younger self that those feelings of isolation and loneliness would not last forever.

I would tell the sad, lonely girl to stay strong and positive and ensure her that positive things will eventually come into her 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 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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