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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A Perfect Sunday Dinner Party …

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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!).

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!

Top 3 Tuesdays: Music to lift the spirits

 

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Welcome to the twelfth 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:

Top Three Tuesdays: Name three songs that you can listen to that gets you out of a low point or lift your spirits 

 

The Overtones: 'Saturday Night at the Movies'
The Overtones: ‘Saturday Night at the Movies’

The first for my top 3 of songs to lift my spirits when living with chronic illness gets me down or my symptoms are particularly is not actually a song but, have instead chosen an entire album.  Last week, was a very tough week as my dizziness was extremely severe and was left unable to function but it was also the week that the new album by the group ‘The Overtones’ was out.  The album is entitled ‘Saturday Night at the Movies’ and as the title suggests it is an album composed of popular songs from films such as ‘The Blues Brothers’, ‘Dirty Dancing’, ‘Breakfast at Tiffany’s’ and ‘Pretty Woman’.  I instantly fell in love with listening to the album and despite the severity of the dizziness and how miserable it was making me feel, I found however that listening to the upbeat songs instantly lifted by spirits and my mood.  My particular favourite songs on the album to listen to, for lifting my spirits and making me feel happy are ‘Shake a Tail Feather’ ‘Do You Love Me?’, ‘The Bare Necessities/I Wanna Be Like You’ and ‘Don’t Worry Be Happy’.  An album that has out a smile on my face even through the darkest of hours.

What Doesn’t Kill You (Stronger) by Kelly Clarkson 

Again this is another uptempo track, which instantly lifts my mood anyway.  But in my opinion, this song makes a great soundtrack on an album designed especially for ‘spoonies’ as it is a reminder that although it may not always feel like it, especially when our chronic illnesses are bad we are still strong for living through all of it.  Although, it’s a song about a break-up after the end of relationship, it still applies in many different areas of life, including rising back up after a knock from living with a chronic illness.

Born This Way by Lady Gaga

This is by far my favourite Lady Gaga song.  It’s upbeat, fun and most of all the lyrics remind us that whatever makes us different from others, whether it’s sexuality, skin colour or in spoonies case living with a chronic illness then we should not be ashamed of who we are, and instead celebrate our uniqueness, because after all “we were born this way”.  In the past, perhaps long before I was diagnosed I was ashamed of my health problems, and the symptoms that I constantly had to live with, and this song just reminds me not to be, and just love myself for the person I am instead of the person that I wished I could be.

 

So, there are my Top 3 Music Playlist to lift my spirits on a bad day with chronic illness.  What are your go-to songs when you are going through a low point or need to listen to something that lifts your mood?  As ever would love to hear your comments and views so please comment below….

Am Taking Part in an Invisible Illness Panel!

Hello Everyone

I just wanted to let you all know that tomorrow at 12.00 p.m. EDT (4.00 p.m. GMT) I will be taking part in an Invisible Illness Panel with WEGO Health and Christine Miserandino from ‘But You Don’t Look Sick’ who is very influential within the Invisible Illness Community, the author of the wonderful and relevant ‘Spoon Theory‘ and whom coined the phrase ‘spoonies’ for all those living and dealing with invisible chronic illness.  The topic will be the Journey to Diagnosis with an Invisible Illness.

You can join in the conversation by going to the tweetchat tomorrow, where there will also be a link to the online meeting room:

http://tweetchat.com/room/haroundtable

Wish me luck!!