HAWMC Day 30: Through Illness You Find Out Who Your True Friends Are…

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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.

Thursday 30th April: I wish I would have known… 

There’s a reason why we have the saying, “Hindsight is 20/20”.  What do you wish you had known at the beginning of your patient journey that would have made it easier and less scary?

Those of you that have been following my blog posts for #HAWMC (Health Activists’ Writing Month Challenge) will know the struggles I faced during my life prior to chronic illness (well, in my case it was not really prior illness just that I was unaware of the condition) with the name-calling and isolation that I experienced at school.  The excruciating loneliness and struggling with feeling so different from my peers.

After being diagnosed with the neurological condition, however, did nothing to help those feeling of loneliness and isolation.  In some ways, these feelings seemed to multiply.  And as the condition deteriorated and facing difficulties with mobility and going out, the friends I had made since school seemed to vanish and was once again facing hours of being alone, stuck inside the same four walls.  The isolation and loneliness were deafening, and all I wanted was strong and unwavering friendships to silence them.

Facing an uncertain future, with a permanent neurological condition and a life-time of symptoms as a result, felt incredibly lonely in itself, but was further exacerbated by a lack of support system outside of my family.

Therefore, the one wish that I would have known at the beginning of my patient journey is the wonderful support system and the chronic illness community that exists online and the presence of the many wonderful people who blog and help raise awareness of chronic conditions on social media.

I wish I had known about the ‘Spoon Theory‘ a wonderful theory coined by fellow Health Activist Christine Miserandino; a thread which unites everyone living with a chronic illness regardless of the diagnosis, and whether it be a physical or mental condition.  It’s a theory which encompasses everyone with a chronic illness, and has grown into a large and beautiful community.

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Proud to be part of the ‘spoonie’ community!

 

I really wish that I utilised social media, in particular Twitter sooner, as the support from fellow ‘spoonies’ has been and continues to be overwhelming.  I have received many lovely messages from people I have never met on those many bad days; just little messages to serve as a reminder that I am not alone. I do not walk alone on the journey of living with chronic illness.

I have made some special and life-long friendships with women I have met through social media and through this blog and other projects.   In many ways these friendships are stronger and more meaningful than any other friendships I’ve ever had before, despite never having met in person.  It is true that friends are like stars; the distance between two people does not diminish the strength of the friendship.  The test of a true friendship, is whether they are there for you when you need them, and with the friends I have made online, I found that they are, and are true friends.  Something I have never found in friends I have made close to home.

Through living with illness, you really find out who your true friends are
Through living with illness, you really find out who your true friends are

I found myself listening to a song Gavin DeGraw entitled ‘Fire’ and there was a line in the song that I felt really summed up the experience of being a part of the ‘spoonie’ community:

Oh ever since the dawn of mankind

Yes, life with chronic illness is difficult, unrelenting and painful.  But it’s easier to carry on living when you are part of a community of other people who are sadly also living with the effects, supporting and commiserating each other through the difficult times and celebrating the triumphs.  It is a comfort in the knowledge that there are people who understand what it is that I am going through and the difficulties that I face as a result of living with a neurological condition.  This is clear from emails and messages I have received as a result of writing this blog; they thank me for sharing the post and writing words that they cannot express themselves.

Our bodies may be weak; some perhaps are even failing but standing together, we are stronger.

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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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The People I Love to Follow…

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Welcome to the fifteenth day of the National Health Blog Post Month Challenge hosted by WEGO Health.  Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Favourite Fridays: Who are your favourite people to follow on social media?  (Twitter, Facebook, Instagram, etc.)

 

 

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The first person that I love to follow on Twitter is of course my best friend and surrogate sister @AishaJemima.  Aisha is a truly inspirational woman; who is determined to fight for all those suffering with chronic illness through her work establishing ‘Unseen Magazine’; a magazine coming soon for everyone living with or caring for someone with a chronic illness.  Although, fighting with a chronic illness herself, Aisha works very hard behind the scenes on the magazine, but more than that despite everything she has to contend with her tweets are always extremely positive and uplifting and as well as this she is always sends a lot of support to a great many number of fellow ‘spoonies’.

An example of the positive and uplifting tweets I have received from Aisha:

 

Another person on Twitter who I love to follow is another ‘spoonie’ friend of mine @anyadei.  Anya is a very compassionate and intelligent young woman who is extremely passionate about patient advocacy and self-management of long-term health conditions.  On social media such as Twitter Anya, always raises great and though-provoking questions regarding  topics relating to healthcare, self-management of long-term health conditions and patient issues; as well as tweeting links to a variety of different articles relating to issues she is clearly so passionate about.  And as well as all this and working in this particular field and battling several long-term health conditions herself, she still remains extremely supportive of myself and other spoonies on social media; with supportive tweets sent on days which are proving to be very bad.  It is tweets such as these which really make these bad days bearable.  Thank you xx

And finally…

An organisation that I am involved with and following on various forms of social media is @NeuroNula.  As someone who is living with a long-term neurological condition myself, I know how little support there is out there for neurological conditions.  And not just support but also information regarding other services and organisations that can provide services for patients with neurological conditions.  Therefore, that is why I love following Neuro Nula on social media as well as sharing or retweeting messages that they have posted – if it can help one person to feel like they are not alone in this journey of living with a neurological condition as I have done for so long then it is a job well done.  I really look forward to seeing the final website and meeting other people with neurological conditions and gaining new friends along the way!

Social Media and the chronic illness experience

This post is for the ‘Patients for a Moment Blog Carnival’ hosted by Leslie at ‘Getting Closer to Myself‘.

This month’s theme is Social Media and illness, with which there are two parts!  The first part is to describe our illness using just 140 characters; just as if we were using Twitter to do so.  This could just be one statement characterising the illness experience, or a series of statements of 140 characters.

The second part of the challenge asks us to describe how social media has personally impacted our illness experience.

So, how can I describe my condition just using 140 characters?  Well, this could be extremely challenging giving the complexity and the unrecognised nature of my illness.  But here it goes…

Neurological condition affecting the brainstem. The effects include constant dizziness, vertigo and spastic paraparesis affecting the legs

The first part is self-explanatory, obviously the illness that I live with is a result of a neurological condition, known as a long-standing brain-stem lesion.  The lesion is scarring of the brainstem, possibly as a result of a head injury of birth, although as it was diagnosed years later, the exact cause of the lesion is unknown.  The effects that I listed are the main symptoms that I experience as a result of the neurological condition.  As the statement suggests this include the constant dizziness (feeling as if my world is unbalanced), vertigo (as if the world around me is spinning).  The spastic paraparesis is another symptoms that is troublesome to my daily life.  It affects primarily the legs as suggested by the above statement.  It causes stiffness and weakness of the legs which makes it uncomfortable and at times very difficult to walk.  Often due to the weakness, it can cause my legs to suddenly give way from under me.  Recently, I have been battling severe trembling in the legs, a jelly-like feeling in my legs, which above all is extremely uncomfortable and leaves me unable to stand for long.  Of course, there are other symptoms that I experience such as nausea, neuropathic pain and fatigue.

Are you able to describe your condition in 140 characters?  Give it a try!

 

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To the second part, then!  How has social media impacted my illness experience?  For starters, the impact upon my illness experience is mainly positive.  Social media, not only allows patients to connect with others and share their stories and experiences, it also allows patients to raise awareness of their particular chronic illness, and share with others what it is like to live with illness every day, and everything that goes with it, for example, I often tweet via Twitter on how I am feeling, and attempt to write how the symptoms affect me and what it is like to live with them.  Not only is social media fantastic and advocating and raising awareness of illness, but it is great to connect with others, particularly when we are experiencing a flare or relapse, and gain support from other patients in similar circumstances.  It provides camaraderie for those experiencing chronic illness, like myself.

Think about when you are ill in bed, it often involves being stuck in bed, alone whilst everyone else is busy living their lives.  Asa  result, it often leaves you feel lonely and isolated, right?  Think if illness was a regular part of your life; being stuck in bed, lonely in your bedroom with no company was a regular part of your routine.  That feeling of loneliness and isolation is also a regular part of your life, however Twitter and other forms of social media, provides patients with chronic illness a perfect tonic, as it allows to converse with other people even when in bed via new technologies such as smartphones and tablets.

It provides entertainment and diversion from illness.   Often, when I am bed bound due to the extreme weakness in my legs, or due to severe dizziness, I am very grateful for the supportive messages that I receive on Twitter from other chronically ill patients and friends; they really brighten the day, and also reminds me that I am not alone on the journey through illness.  Social media provides real-life perspectives on illness, and besides the entertainment and social aspects, perhaps the most valuable features of such sites is it’s a place free from judgement and stimatisation that many experience in the real-world, as well as educating others about particular medical conditions in order to tackle the problem of stigma .

 

HAWMC 2013 Day 28: You Must Follow These Brilliant People…

 

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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:

Create a must follow list for your community on a single social network.  Share your top 5-10 tweeters, bloggers, or Facebook pages. 

I so wish that I could share some fantastic resources and tweeters who share the same condition in which I live, however, the condition seems to be rare and have yet to meet anyone with the same diagnosis.  However, I have had the pleasure to meet some truly fantastic people through Twitter, and who often sends me words of comfort or support through my own struggles and have become great friends in the process.  So, if you are on Twitter please follow them and find out for yourself how kind and beautiful they all are:

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Marissa Christina – @MarissaAbledis

Pamela Sloate – @dystoniamuse

Anya de Longh – @anyadei

Aisha Bukari-Clarke – @AishaJemima

Unseen Magazine – @unseenmaguk

Sarah Levis – @GirlWithTheCane

Chronically Awesome Foundation – @ChronicallyAFnd

Patients Association – @PatientsAssoc

Peggy – @moyamoyagarden

The Spin Sisters – @TheSpinSisters

I have met so many wonderful people on Twitter but I was only able to choose up to 10 to share with you today.  For all those not included, know that I truly value your friendship and kindness you have shown me.  Thank you x

Who are your top tweeters/bloggers/Facebook Pages?  Please get in contact and share them below!

HAWMC 2013 Day 11: Why I love to Tweet!

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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!