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tumblr_lr8hwvvEai1qmupweo1_500 Throughout my teenage years, I was a massive fan of the television show ‘Friends’.  Not only was the show incredibly funny but I also loved the relationships between the six main characters – their strong bond of friendship and how they were constantly there for each other.  However, although the show was entirely fictitious, I also found myself feeling envious of the close friendship as; unfortunately, I had none of my own after my so-called friends abandoned when symptoms, especially the dizziness started interfering with my everyday life.  There is nothing like a diagnosis of a neurological condition, or any other chronic illness to show who your real friends are. After leaving university and entering adulthood, the problems regarding friendships have not improved.  Many friends that I have made, unfortunately no longer in contact with me; despite my attempts to do so.  This is something that has hurt me deeply over the years, especially as I thought of them as close friends.  I am not sure the reasons behind the now lack of contact – the reason may lie in their own prejudices towards my conditions, or perhaps they failed to understand the reasons behind my inability to go out to places that I find uncomfortable and can precipitate an attack of vertigo.  Whatever the reason, however, it hurts deeply and has often led to a decrease in self-esteem and self-confidence as a result. In my last blog post, I write how many of my symptoms have recently worsened and furthermore how I have struggled both physically and emotionally because of the sudden deterioration.  What has also made it harder is the loneliness and isolation that I have felt when in the house during this period.  It is during these times that I wished that I had friends living close by that could pop by for lunch or to take me out to distract me from my severe symptoms and make me feel that I am less alone in my struggles with living with this condition.

Although I may have a distinct lack of friends living nearby, I have however made a lot of friends online that although the distance between us is significant, they should not be excluded from this discussion into friendships and chronic illness.  These friendships that I have developed online through the blog and social media have come to mean so much, as they too also experience chronic illness or other long-term chronic conditions and therefore understand exactly what it is like to live with them and thus gives support like no other.

Furthermore, by using tags and hashtags on social media such as the term ‘spoonie’ (a person who is living with a chronic illness or chronic pain) is not only fantastic at connecting with others going through similar experiences but also makes us feel that we are part of a community.  A fact that is important as due to our conditions we often feel excluded in other areas of life.

Tweet: The term ‘spoonie’…makes us feel that we are part of a community… http://ctt.ec/XB4rF+ via @serenebutterfly

And it is thanks to these online friendships that I now feel that I have people outside my family that actually care about me.  It has also led to the feeling that I am worthy of such friendships (as I have been burned by many people in the past, I often felt that there was something wrong with me, or was not worthy of friendships).

It is surprising that these online relationships can develop into such strong and meaningful friendships.  For many of us living with long-term health conditions, or conditions which prevent us, or makes it difficult for us from getting out into the community we know that it is these friendships that are so important to us and makes life living with illness a little easier.

In my experiences, I have often found that the friends whom I have met online actually keep in contact with me, or even cares more about me than the people who are in my real-life existence. images A favourite saying of mine is “Friends are like stars.  You don’t always see them, but you always know that they’re there…” and it is certainly true regarding my fellow chronically ill friends.  Just because I don’t see them, it does not make the friendship any the less relevant or real – what is important, however, is that they continually are there for me during my struggles and even through the good; and also that they show concern and support when I need it.

Tweet: Friends are like stars. You don’t always see them, but you know they are always there http://ctt.ec/HUlcN+ via @serenebutterfly

So, what if it comes through a computer screen instead of face-to-face interaction, isn’t the fact that we have made a connection with another person the most important point? But perhaps there are ways which I can develop these friendships further – maybe by swapping phone numbers with friends I have made online. Or start using Skype as a means of keeping in contact with people may be a start in gaining support when I am in need, and to also give support for when I am required to support someone else in need?

So, I am interested – what are your experiences of friendships and life with chronic illness?  Have you still managed to maintain friendships with those in your real-life existence? Or do you rely on friendships that have developed through online communication?  Love to hear your thoughts and comments on this subject so please don’t hesitate by getting in touch by commenting below or even getting in contact via social media (links can be found by clicking the icons at the top of the page).

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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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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!).

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Welcome to the twenty-eighth 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:

A Time to Give Thanks: What’s the one thing you’re most thankful for?  Write a list of three things that you’re thankful for, excited about, or inspired by.

Although it’s extremely difficult living with a chronic illness, it still is however important to remain grateful and give thanks for everything that is good in our lives.  We must do this in order to remain positive and upbeat despite our journey through illness so we remain resilient.  So what are the things that I am most grateful for despite living with a neurological condition?

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I am thankful for my friends and family.  Having material items such as tablets, and other computer devices to stave off boredom and to keep me occupied whilst stuck in bed, however, it is the people in your life that are constantly there for you and make travelling the road of chronic illness so much easier.   For example, I blessed to have amazing and supportive parents.  Parents who are always there for me; taking me to places where I need to go, or do little jobs that I am unable to do.  For example, whenever I am stuck in bed, my Mum or dad regularly comes to my room and asks whether there is anything I need, such as a drink or something to eat, and they will bring them up to me, without any complaints.   In addition, a couple of weeks ago, when I was going through a particularly tough time with my illness, and as a result was constantly in tears, my Mum was there for me, whenever I needed her – she would phone me from work to see how I was, or would give me a cuddle, and wipe my tears for me.  My parents make it easier to live with my condition everyday, and no amount of words can adequately express my thanks and gratitude to them or how much I love them.

Then there is my dog Honey, and although she can be incredibly cheeky, and naughty at times, she is at other times the most sweetest, caring and loyal dog.  For example, whenever I am having a bad day, or feeling depressed, she is giving me cuddles and kisses.  Or, if my legs are particularly bad and I am falling over constantly; she is there by my side instantly to make sure that I am OK and not hurt.  And then she will follow me around; never wanting to leave me out of her sight until I am safely lying on a sofa or on my bed.  Last week, when my parents were out of the house doing shopping and other chores, and I was unable to get out of bed, Honey would regularly run up the stairs and peer into my room to check on me and satisfied that I was fine, she would return downstairs to lie on the sofa.   Once I fell whilst on my own, and was unable to get up afterwards, and she lay down beside me the whole time, until Mum came home approximately 20 minutes later, soon as she came through the door Honey rushed to her to alert her that I needed help.  She is a super dog!!

And I am finally thankful for my best friend, and surrogate sister Aisha.  Aisha has been my rock, and her friendship and support has meant to much to me.  Every day she sends me a message on an instant messaging service or via Twitter to see how I’m doing and if I am having a rough time, or need someone to talk to, she is always there.  And even during tough times, she always makes me smile with her words, and take comfort in her encouraging speeches. Once, there was a time, where friends were walking out of my life and cutting all contact with me, so I am blessed and grateful that I have found such a wonderful, caring and supportive friend.

Looking back at this prompt, I have learned that it isn’t the little material items that we should be grateful for but instead be thankful for the people (and pets!) that are in our lives and make life with illness easier and more tolerable.

What things are you grateful/thankful for?  As ever would love to hear your thoughts so please 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:

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:

images-1Image Credit: The Daring Librarian @ Flickr

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!

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