20 Things You Might Not Know About Me

Thank you to Llinos from the amazingly brilliant and inspiring blog ‘Whispers of Wellness‘ for tagging me to take part in the ’20 Things You Might Not Know About Me Challenge.’  This challenge was originally started by another blogger by the name of April from ‘Blacksburg Belle‘.  The aim of this blog tag was to build a community among fellow bloggers, and help these bloggers to not only connect more but to also get to know one another better.  If you are a fellow blogger and would like to participate or just want to know more information, then you can visit the original post here.

All about me!

All about me!

Question 1: How tall are you?
I am amazingly short at only 4″11 which makes it incredibly difficult to find nice clothes such as trousers and dresses. Often even clothes in the petite section of some stores are still too long on me!

Question 2: Do you have a hidden talent? If so, what? 
If I do have one, it is even hidden from me! So no, no hidden talents whatsoever.

Question 3: What’s your biggest blog-related pet peeve?
When certain sites require that I log-in or jump through hoops just to be able to comment on a post.  I want to be able to reply to someone’s post simply and quickly,  I feel that this stops from people adding to the conversation that I have started from my own blog posts.

Question 4: What’s your biggest non-blog related pet peeve? 
At the moment, it is definitely abled people parking in disabled parking bays.  This unfortunately happens a lot and as I need a disabled parking bay due to mobility problems it means that my carer and I have to wait for ages for another one to become available.  Wish some people would be more considerate and think before they use these parking spaces.

Question 5: What’s your favourite song? 
Such a difficult question as I have so many depending on my mood but I really do love Somebody to Love by Queen

Question 6: What’s your favourite Etsy shop that isn’t yours? 
It has to be the Itty Bitty Book Company as they sell the most beautiful and positive books, prints and cards.  I have bought several items from their store and they really help me to stay positive despite living with a chronic illness

Question 7: What’s your favourite way to spend your free time when you’re alone? 
It has to be reading.  It is one of my favourite pastimes anyway, but find it so relaxing and comforting to be able to curl up on my bed with a warm blanket and lose myself in a good book.  Find the silence really helpful to be able to concentrate on what I am reading too!

Question 8: What’s your favourite junk food? 
I do love to indulge in some Ben and Jerry’s ice cream when feeling down, or whenever my symptoms are particularly bad

Question 9: Do you have a pet or pets?  If so, what kind and what are their names? 
Yes, I have a dog (a dachshund cross jack russell) called Honey.  She really does add colour and joy into my life and provides me with comfort and security when alone in the house, and especially when I am alone whilst dealing with severe symptoms.  She can be like a nurse and security guard in one little package!

IMG_0002

Question 10: What are your number one favourite nonfiction and fiction books?
So hard for a bookworm like me to come up with just two all time favourite books!!  They tend to change all the time but at the moment in terms of fiction it has to be The Storyteller by Jodi Picoult.  For a nonfiction choice, I have found Things Get Better by Katie Piper very useful in getting through difficult periods.

Question 11: What’s your favourite beauty product? 
My favourite beauty product has to be my BareMinerals foundation and blusher, as it has been very helpful in giving me a healthy and natural glow even when I have been deathly pale as a result of chronic illness

Question 12: When were you last embarrassed? What happened? 
The last time I was embarrassed was when I was in a local charity shop and the wheel on my wheelchair got caught in one of the display rails which resulted in the display falling and hitting me in the head with some force!  I was in flood of tears because of the pain and the shock as it was so unexpected.  That was embarrassing!

Question 13: If you could only drink one beverage (besides water) for the rest of your life, what would it be? 
I mainly only drink water anyway, but if I had to choose something else to drink I probably would choose a strawberry milkshake

Question 14: What’s your favourite movie? 
Again that it is a really difficult question as I really love my films and have quite an extensive DVD collection myself.  It often changes but it would probably be Safe Haven starring Josh Duhamel and Julianne Hough.  It’s lovely and romantic!!

Question 15: What were you in high school: prom queen, nerd, cheerleader, jock, valedictorian, band geek, loner, artist, prep?
I was most definitely the loner – unfortunately I had very few friends at school as many could or perhaps would not understand the symptoms that I was living with and the effect that it was having on my life

Was most definitely a Loner in high school - just like Ally Sheedy from 'The Breakfast Club'

Was most definitely a Loner in high school – just like Ally Sheedy from ‘The Breakfast Club’

 

Question 16: If you could live anywhere in the world, where would you live?
I really have no idea, where I would live if I had to choose somewhere else to live.  I am a home bird at heart so I would probably answer that I am happy where I am living now.

Question 17: PC or Mac? 
Definitely would choose my Mac!

Question 18: Last romantic gesture from a crush, date, boy/girlfriend, spouse? 
Can’t think of one!

Question 19: Favourite celebrity? 
I really admire Angelina Jolie and all of the humanitarian work she has done over the years.  She often come across as extremely intelligent, articulate as well as somebody who cares about everyone she meets.

Question 20: What blogger do you secretly want to be best friends with?  
That is another really tough question as I have had the pleasure to meet many wonderful fellow bloggers and had the fortune to read many wonderful blogs which are interesting, articulate and thought-provoking.  If I had to choose one, I would choose Sophia from ‘Spoonie Sophia‘ as I really admire her strength and determination to find anything to help her deal with the symptoms that come from her chronic health conditions.  She is a fantastic advocate for anyone looking to experiment with their diet and using food as medicine.

 

I now tag:

Sophia from http://spooniesophia.wordpress.com/
Reina from http://reinafleet.wordpress.com/
Rachel from http://racheldavieswriter.com/ 

 

 

 

 

 

 

 

I’m supporting Balance Awareness Week! Will you?

Every year in September VEDA (Vestibular Disorders Association) aims to raise awareness for vestibular conditions.  They also aim  raise money for research into these disorders which causes dizziness and affects the balance system.

According to the VEDA website:

The goal of Balance Awareness Week is to reduce the time it takes to diagnose a vestibular disorder. We help patients recognize the symptoms of a vestibular disorder and urge them to seek help from a professional specialist. We also encourage family and friends to learn more about vestibular disorders so they can support their loved ones’ who are suffering from dizziness and other debilitating symptoms.

Although, I do not suffer from a vestibular disorder myself; dizziness and disturbances in my balance is a large part of my life.  Due to a neurological condition, I am constantly dizzy as well as frequent episodes of vertigo and as a result my balance is affected with these symptoms affecting my gait (the way I walk) and causing falls.  Therefore, I understand and have experienced the loneliness, frustration and isolation these symptoms can cause and as a result I am supporting the ‘Balance Awareness Week’ (September 15th – September 21st 2014).

One way in which I have already shown my support for VEDA and raise awareness for Balance disorders is by purchasing a t-shirt designed by my great friend, Marissa.  Marissa has been a fantastic advocate for everyone affected by dizziness and vestibular conditions.  Marissa not only blogs about her own battle with dizziness and balance issues at her site Abledis.com, but she also founded ‘The Spin Sisters’ a podcast that discusses life with chronic dizziness and coping with a chronic condition.  To find out more about why Marissa is raising money and helping VEDA, then you can read so by viewing her personal campaign page here.

balanceawarnesstshirts

There are two t-shirts available in the Balance Awareness storefront – one funky and lighthearted design that features the phrase ‘Dizzy not Drunk’.  This is because many people who suffers with vestibular disorders often are accused of being drunk because it can result in an unsteady gait when walking which is also a sign of intoxication.  The other design is a simple and plain design with the hashtag ‘Cure Dizziness’ and ‘Balance Awareness Week 2014′ underneath.  The ‘Cure Dizziness’ design is available in adult (men and women) and youth sizes.

There is only six days left on the t-shirt campaign, so please if you can then purchase your own to show support for everyone affected by dizziness and balance disorders.  These disorders can affect anyone at anytime and is something that could affect at you at some point.  As Marissa says:

Rocking an awareness t-shirt means we all get to stand in solidarity with those suffering in silence… PLUS you’re getting a cool looking t-shirt!

 

If you aren’t able to get your own t-shirt then please  help spread the word and raise awareness about such conditions on social media and help all those who are suffering with such conditions in silence.  Awareness is a catalyst for a change so help and be a change agent!

Reflection on Robin Williams and Depression

I was very saddened to hear of the loss of one of the greatest film comedians of our time – Robin Williams.  Like many others, I grew up watching him in films such as Mrs Doubtfire, Jumanji,  and Jack as well as delighting in his performances as Mork in the hit comedy series ‘Mork and Mindy’.  Not only was Robin Williams an incredibly talented comedian but he also showed great vulnerability in his performances in more serious roles in films such as ‘Good Will Hunting’, and even in his earlier roles such as ‘Jack’ where he plays a ten year-old child trapped inside a man’s body due to a rare ageing disorder.

His death is incredibly sad.  Not only has the world lost a huge talent who loved to make others’ smile and laugh despite hiding an incredible sadness within himself but his family lost someone they so deeply loved.  A wife has lost her husband and three children have lost a father.  But what is also sad and tragic is the ugliness that a minority have people shown in the wake of his death.  Reportedly, Zelda the daughter of the late star has left social media due to messages from cruel trolls.  Also, there have been many who have posted such cruel and horrible online messages because of the way he died.  It was established early on, that Robin Williams sadly took his own life after many years of battling demons such as alcohol addiction and depression.  In the wake of the news, many blamed Williams for his death stating that they had no sympathy as he was to their minds selfish and not thinking of his family.  Others asked themselves what did he have to be depressed about as he ‘seemed to have it all.’

Robin Williams in 'Patch Adams' a film that taught us that laughter is the best medicine

Robin Williams in ‘Patch Adams’ a film that taught us that laughter is the best medicine


But that is the thing about depression – it does not discriminate (Click to Tweet)

But that is the thing about depression – it does not discriminate.  Depression does not care if you are rich or poor.  Depression does not even care if you are famous.  Depression is a cruel illness which can affect anyone at anytime.  It is an illness that I am all to familiar with; it is an illness that has affected my life since my teenage years.  And add a diagnosis of a chronic illness such as Parkinson’s Disease, with which Robin Williams was reportedly diagnosed with before his death than depression, it could be argued that depression is a natural reaction.  Chronic illness, and particularly one of a degenerative condition can rob you  and changes everything that you knew – your health, mobility, relationships, career and the future to name but a few.  Chronic illness makes life uncertain and scary.

Chronic illness makes life uncertain and scary (Click to Tweet)

To those who accused Robin Williams  and those who commit suicide of not thinking of his family, this could not be further from the truth.  As someone who has been so down, even experiencing thoughts of suicide, then I know that in these situations the person are thinking of their family and loved ones – when depressed, and certainly when also experiencing a chronic illness which makes  you reliant on your loved ones you therefore feel that your family would be better off without you around.  Of course, it is not true, but depression is a beast that changes the way you think and therefore convinces you to think the worse.

Fortunately, I found support, especially the support available online within the spoonie community.  I came to the realisation that life is worth living despite living with a neurological condition.  Unfortunately, it was too late for Robin Williams.  If you are reading this and you feel depressed and suicidal then please reach out for help – tell somebody.  Life is worth living even if it may feel that it doesn’t right now.

In regards to Robin Williams, let’s remember him for the person he was – a person who had a raw talent and loved to make others laugh and be happy.  Let that be his lasting legacy and not the way he died.

To talk to someone in the UK  you can call ‘The Samaritans':

  • 08457 90 90 90 * (UK)

Or contact Mind: The Mental Health Charity: www.mind.org.uk

In the dark and in the unknown…

This is a very hard post to write.  Not only because of its contents but also because of the way recent events has left me feeling, which is very down if I am to be honest with you all.

This is because last Tuesday, I had yet another hospital appointment with the neurological consultant that I am under.  The purpose of this visit was a follow-up on how I have progressed since the last visit but also to find out the results of the tests that I have had conducted as well as the findings from the other consultants that I have seen, since the last time that I saw him.  All of the test results came back clear, however and as a result we are no more closer to finding a diagnosis than we were before.

Of course, it is a relief to know that there isn’t anything seriously wrong, but at the same time I was devastated at the lack of positive test results and as a result no diagnosis.  During another neurological examination, when asked to slide my ankle down the opposite leg, the bent leg started going into spasm.  At this finding, the neurologist’s face became puzzled, but at this he could tell something is wrong but is at a loss what it could be.  Interestingly, he noticed findings that were not present during the last examination.

imgres-1

So what now?  Well, now he has decided to test for some genetic causes to explain my symptoms, including:

  • Dopa-responsive dystonia
  • Dystonia
  • Spinocerebellar ataxia

I think I am partly becoming down because of the unknown of this situation.  The unknown of what exactly is wrong with me as well as the unknown of what I am facing.  In my opinion, not knowing is often the worse than the reality.  If I had a definitive diagnosis, then at least I would have an idea of what may happen and to make plans accordingly.  However, not knowing is similar to being stuck in limbo; stuck in the middle of nowhere and at a lost as to the direction my life is headed.

“Not having a definitive diagnosis is like being stuck in limbo…” (Click to Tweet)

I am also worried that if the doctor’s are a loss as to the cause of my symptoms than they are eventually going to be labelled as being psychological.  It is true that in the past I have had problems with both depression and anxiety but I am positive that these were as a result of my undetermined condition.  For example, I know that the anxiety started after the dizziness – who would not become anxious after experiencing something so unpleasant and not knowing what was happening?  Then there were the thoughts that I should have asked more question, for example should I have asked for a MRI with contrast – could that have shown something a regular MRI would not?  Although I am worried about this, the neurologist that I am under seems to be determined to find the cause of my symptoms and is even willing to refer me to someone else in the department or even a possibility of being referred to a specialist neurological hospital in London.

But in the meantime, it looks like I may be stuck in limbo for the forseeable future…

 

So I am interested in hearing your stories of diagnosis…How long did you wait  for a diagnosis? If you are still waiting for a diagnosis, how do you feel about it?

Am also interested in the views of those living with the disorders that are mentioned above…How long did you wait to be diagnosed?  How were you finally diagnosed?

Feel free to comment below…

Enjoy the small, simple silver linings

I was inspired to write this new blog post after reading a particular article from ‘The Huffington Post

The article was regarding recent research by the biscuit brand go ahead! to find out what really makes people in Britain happy.

Surprisingly, what topped the list was not extravagant things  The list was compiled however by simple pleasures walking in the sunshine which topped the list as well as other feel-good pleasures such as getting into fresh bed sheets, having a cuddle from someone and listening to your favourite song as examples.

Reading the article, made me think of life with chronic illness.  Often when living with a chronic illness, such as lupus, multiple sclerosis and fibromyalgia for example, we are constantly looking for the next big successful outcome or achievement to make us feel-good or give us a sense of peace.  I know when symptoms are very bad, I know that I feel miserable, and only imagine myself only being happy again if I were to be miraculously cured or the severity of the symptoms subsided.  Day-to-day we are often too focused on our symptoms and the negative effect that they are having on us  not only physically but also psychologically and emotionally.

We therefore forget to focus on the small pleasures that make us happy and take us out of ourselves; the forget the negative situation that we find ourselves in and to find happiness in what is around us.

So, I have decided that I would write my own personal list of my own feel-good pleasures that makes me happy:

  1. Reading my favourite book
  2. Receiving a handwritten letter
  3. Looking at colourful butterflies

    b4

  4. Receiving flowers
  5. Getting into fresh bed sheets
  6. Watching my favourite film
  7. Receiving a lovely comment on a blog post I have written
  8. Finding a lovely present for someone
  9. Receiving a hug from someone
  10. Seeing a rainbow
    imgres
  11. Being wrapped in a warm blanket especially on cold dark evenings
  12. Receiving an unexpected phone call from a friend
  13. Being pampered, e.g. a massage or a trip to the hairdresser’s
  14. Applying colourful nail polish on my nails
  15. The smell of popcorn
  16. The taste of chocolate
  17. Being kissed by my dog Honey
  18. Spending Sundays with Mum
  19. The feel of soft and clean towels
  20. Going out and enjoying the sunshine
  21. My gorgeous cushions which brighten my bed and helps keep me comfortable when I rest in bed
  22. Waking up after a restless sleep
  23. Browsing in a book shop
  24. Making decopauge cards
  25. Completing a level of a game that I had been stuck on for ages
  26. Publishing a blog post that I had been working hard on
  27. People smiling and saying hello to me on the street
  28. Enjoying my favourite drink and relaxing in my favourite coffee shop
  29. Laughing
  30. The sound of the rain

Those are some of the things that would be on my persona top favourite feel-good moment list.  What would be on yours?  Comment below and let me know!!

To see the full list of what British people voted as their top favourite feel-good pleasures, visit the Huffington Post article here.

 

 

 

 

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.

 

10537028_10154373788130534_3864185574870643897_n

 

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:

Copy-of-The-Pillow-Fort-2-1-600x600

I’ll be there for you…cos you’re there for me too…

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 certain 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 in a close proximity, I have however made a lot of friends online that although the distance between us is large, 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 our 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, and have 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, but for many of us living with long-term health conditions, or conditions which prevents 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 then 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 important 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 a 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 – perhaps swapping phone numbers with friends I have made online, or even start using Skype as a means in 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 needed 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).