Spread a little magic…

Christmas is most truly Christmas when we celebrate it by giving the light of love to those who need it most
– Ruth Carter Stapleton

Well, the Christmas season is nearly upon us and now is the time to start buying gifts for all your loved ones.  Of course, gifts can be bought and given at Christmas or birthdays – gifts are really lovely gestures for when a loved one or good friend is struggling due to personal circumstances.  One example, of course being when suffering a chronic illness.  When living with a chronic illness, we often experience both good and bad times due to our chronic illnesses, and when experiencing lows, I know due to personal experience that receiving a card or small present can bring a little sunshine to dark days as well as the pleasure in knowing that someone has thought of us, despite the overwhelming feelings of loneliness and isolation that can accompany life with a long-term health condition (especially one which results in the majority of days being spent in the house).

As it is the time of giving and thinking of others, I thought I would share some gifts that I have come across that someone going through a difficult time might appreciate, or is ideal for someone living with a chronic illness like myself!  And perhaps think about those who are experiencing difficult times presently and maybe think about sending them a card and a little something to remind them that they are not alone and that you are thinking of them.  It doesn’t even have to break the bank either – you could even try making a card instead of buying one, and if creative even make a present!

A friend of mine was going through a difficult time recently, and as funds were tight, I made her a little gift instead.  I took an old jar and cleaned it up, and thanks to my computer I printed lots of different positive and inspirational quotes I loved then cut them out and rolled each separate quote up, tied a ribbon around them and placed them in the jar.  I even attached a homemade label and called it a ‘Positivity Jar’ and wrote to take one out of the jar whenever feeling sad and low.  It was such a simple idea but my friend really loved and appreciated the thought, and even has it sitting on her dressing table and uses it whenever her bad days present themselves.  Other homemade presents might also include making a special playlist downloaded to a CD full of uplifting and positive songs to cheer them up during the bad days.  And if you are stuck for ideas there always lots of inspiration on Pinterest.

But here are some other lovely gift ideas for fellow spoonies…

Positive and Uplifting Gift Ideas 

It is common amongst the spoonie community to share through social media, positive and inspiring quotes – little mantras that help us stay positive and happy despite all of the limitations and constraints that our conditions places upon our lives.  It is these little mantras that help us and others who are going through a difficult time so what better present than one which provides positivity and inspiration to serve as encouragement to continue and persevere when the going gets tough.

My favourite online store for such inspiring and positive gifts has to be the Itty Bitty Book Company.  They are a small ethical and super friendly business based in Belfast, Ireland and offer a wide range of inspirational and positive gifts from cute badges to their gorgeous ‘Itty Bitty’ Books. In the books range are 3 different books offering inspiring quotes for Motivation, Positivity or Strength and in my opinion it is these Itty Bitty Book of Positivity and the Itty Bitty Book of Strength are ideal gifts for someone struggling with chronic illness or generally are experiencing a difficult time in their life.  I have all 3 of their gorgeous and handmade books and as they are small they are ideal to carry in your bag, and to read the lovely quotes and mantras when life gets tough wherever you are.

One of their beautiful prints would also be an ideal gift for any spoonie, and there are a number of different quotes on offer and if one of them has a favourite quote of theirs, even better.  They can easily be framed and placed in clear view of a bed or sofa; wherever they spend the majority of their time because of chronic illness, for example.  Or perhaps one of their cute little badges that can brighten dark winter coats or woolly hats, and are ideal gifts for a low-budget.  And they even offer inspiring greeting cards too which are blank so ideal when wanting to write a personal message inside.

To see the full range of products on offer, or to buy something for a friend (or yourself) you can check out their Etsy store here

Useful Gifts

From personal experience, I know that receiving gifts that have a useful purpose (such as a hot water bottle for example because of problems with feeling cold) can mean so much as it shows that someone as it not only shows that someone has thought of you, but also that they really care and therefore want to give you something that will make you feel better.  This can include a little comfort box filled with goodies such as a favourite type of tea, thick socks, body products and some sweets or chocolate.  For ready-made boxes that you can send with a variety of products that you can personalise for the person you are buying for, then I can recommend the ethical company Healing Boxes that make and send Healing Boxes especially for those experiencing chronic illness, or just experiencing difficulties in their life.  Lovely gifts on offer and a great way to show someone that you care.

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I can also recommend The Pillow Fort shop for fun and useful gifts for someone living with a chronic illness.  Examples of products on offer include cosy socks (for those with poor circulation and as a result suffer from cold feet perhaps), pill boxes (useful item that is a must for any spoonie as it helps to remember if you have taken medication or not!), cosy and cuddly soft toys that can be heated in the microwave (fun alternative to a hot water bottle as it is more comforting and just fun!).  And there are plenty more ideas and inspiration for useful gifts for the spoonie in your life!

Special Gifts 

Sometimes if we are able to  or the person is very close to us we like to give them a very special gift, which is especially true at Christmas for example.  One special gift for example is jewellery and I have come across some lovely pieces online.  Examples include some jewellery even inspired by the positive and uplifting quotes that we love,  I even own a pair of earrings, which are in the shape of rain drops and  a matching necklace in the design of a cloud with a rain drop attached and with these pieces of jewellery came a card with my favourite quote “Life isn’t about waiting for the storm to pass but learning to dance in the rain.”  I even have this card in my purse to remind myself that if I am experiencing debilitating symptoms when I am out that things will get better.  There are plenty of other pieces inspired by uplifting quotes on offer here.

Whenever we put a piece of jewellery on or look down and see it on display it can be a lovely reminder to remain hopeful during difficult times.  The online store Not on the High Street has a beautiful swallow necklace (bracelet and earrings are also available) for example which symbolises freedom and hope for example.  Another online retailer Lily Charmed even offers various items of jewellery than can even be personalised with a message of your choice on the card inside of the box.   I particularly love their spoon necklace which every spoonie will be able to relate to and love.  The snowflake may also be a nice charm to give as a reminder that the receiver is beautiful, special and unique as chronic illness can be difficult to live with, as well as often making you feel extremely different from your peers.

Other Gifts 

Other ideas for gifts which could be useful for someone living with a chronic illness might include:

  • Stationary – great idea for those who love writing and even if they don’t it might encourage them to start doing so as it can be very cathartic
  • Pyjamas – a must-have for any spoonie as we often crave comfort when we are feeling bad and pyjamas are the best type of clothing to offer this (that and perhaps onesies!)
  • Adult Colouring-in books – apparently these are very therapeutic for those experiencing depression and can perhaps offer similar benefits for those with chronic pain, as it could be a form of distraction
  • Gift card for iTunes or Google Play – these are especially great for those who love TV programmes or films as they can buy something to film to purchase to keep them company when stuck at home for example
  • Book – ideal for book lovers like myself!  Perhaps give them a book that they wouldn’t normally read
  • LED string lights – I love these as it gives any room a magical look and will help cheer a person who may be stuck in bed due to illness

So those are some of my top tips for lovely gifts for someone experiencing difficulties as a result of a chronic illness for example.

So perhaps think of those experiencing a difficult time this Christmas that will put a smile on their face and yours and let us all sprinkle a little magic this Christmas (and throughout the year!).

I have recently started a board on my Pinterest page called ‘Spoonie Gift Ideas‘  which has more ideas on special and thoughtful gifts for anyone going through difficult times because of a chronic illness.  Of course, if you have any other suggestions on what to pin then please feel free to get in touch on the blog or my pages on social media.

Let me know of any good deeds that you have done recently or throughout this holiday season and if you have bought something special for any other spoonies this Christmas.

Alone in an invisible world…

This post is for a competition run by an organisation called Labs* by One Squat Shop together with health activist Megan Densmore.  Megan has organised a team of film-makers to make a documentary, called Invisible which highlights and raises awareness of invisible health conditions.  Lindsay Tabas of One Squat Shop has teamed up with Megan and with designer Mat Poirot have produced a limited edition t-shirt which together with the film highlights and makes people aware of the invisible symptoms that people with chronic health conditions suffer but cannot convey to others.  The competition is for one blogger (and one lucky reader) to win a copy of the film and t-shirt (or tank top for women). 

The prompt for the blog post is:

What does the t-shirt design mean to you? How does it make you feel? What does it tell people without invisible illnesses about your experience? How do you hope this will help awareness?

 

The word invisible conveys so many images and messages.  The definition states, that invisible is something that is “not visible, withdrawn from or ought of sight or something that is not perceptible by the eye.”  When I was much younger at secondary school, I thought I knew the meaning of the word as I felt completely invisible to the rest of my peers due to being continually ignored and much time spent on my own due to being ostracised.  However, after living many years with a long-term health condition in which the symptoms that I live with are hidden and cannot be seen by others, I now truly know the meaning of the word.

In many ways, living with an invisible health condition, such as the neurological condition which I live with, is like living inside a bubble of which you are the only one aware of its existence.  You are unable to convey symptoms such as pain, dizziness and fatigue to those closes around you, as they are subjective and is not perceptible by anyone else.  And as those closest around you, as well as society in general are not aware of the symptoms that are ruling our lives, those with invisible chronic health conditions are very often met with suspicion and as a result people can often expect more of us than we are capable of due to ill-health.

As a result therefore, there needs to be much more awareness of invisible illnesses and the debilitating effect that they can have on the individual living with a chronic illness.  There have been fantastic awareness weeks that have been established on the internet and through social media sites such as Twitter and Facebook, which to some extent have raised the awareness of such conditions.  However, there could be an argument that there needs to be more done to raise awareness of invisible chronic conditions away from the internet and more emphasis for the wider society in general.  In the UK, for example, popular soap operas have been very valuable in raising awareness of a wide variety of subject matter such as HIV, domestic violence as well as raising awareness of medical conditions, many being invisible such as MS and ME as examples.

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This is why this tank top design may be another excellent tool to raise the profile and awareness of such illnesses.  The image above shows the very eye-catching design and for those without any knowledge of such conditions it may raise important questions in their mind regarding the meaning of the design, and as the wearer of the tank top is asked about the t-shirt, it therefore allows a lesson of these prevalent invisible chronic conditions.  For me the tank top is a great talking point for anyone not touched by invisible illnesses such as lupus, MS or fibromyalgia as examples.   Also, I am sure you would agree the tank top is also very clever with the design including the lungs as it reflects the idea of everyone being able to see inside our bodies, which in reality of course they aren’t.  For anyone living with an invisible illness, we often wish that everyone around us were able to see inside our bodies; to see the damage and signs of our conditions that only exist inside of us, and to allow friends and family to visibly see the struggles and pain that are a result of our invisible illness.  This tank top for me is an excellent representation of the unseen and invisible struggles that I carry around with me all the time, just as the lungs that are inside of me.  And for me it does all this without being rude or condescending; it is a fun and fashionable way to raise awareness.  As I live with mobility problems, as well as pain and other symptoms which are constant, these of course does not define the person that I am and for me the design perfectly reflects this – our bodies, whether healthy or crippled by illness is a reflection of ourselves, and does not define us as individuals.

I hope that the tank top design will remind individuals to not judge individuals by what they can see on the outside, but be mindful of the person beneath the surface and to be aware of the possible struggles that someone might be living with, which cannot be seen.

Here’s a 5 minute teaser for the film ‘Invisible

As ever, would love to hear all of your thoughts regarding the subject of this particular blog post.  What are your thoughts regarding the t-shirt design?

 

Reasons for loving Winter

When you think of Winter which words and image are conjured up in your mind?  For many, if asked they would answer with images such as the nights drawing in during the early evening, heavy rain lashing against the windows and the sound of the howling wind outside, and those fighting against the constant outbreaks of colds and flu.  These myriad of some of the images synonymous with winter, paints a pretty miserable picture, especially when juxtaposed with images of summer such as the bright, warm sunshine, colourful and vibrant flowers and so on.  Whereas, Winter is seen as a time to dread, Summer is a time where everything feels alive and happy; a time of endless possibilities.  Winter is truly the most cruel and relentless of the seasons

It is only the start of the autumn and winter seasons, and already, I have heard many people complaining and griping because of the cold, wet weather.  For those suffering with chronic pain like me, Winter can also be a difficult time as the very cold temperatures can exponentially increase the amount of pain experienced.  In my experience of living with spastic paraparesis (causing stiffness and weakness in the legs) the bitter cold weather and constant downpour of rain increases the level of stiffness and weakness that I experience, thereby increasing my pain levels.  During previous years, the increases in the experience of pain, stiffness and weakness, has left me reliant on my wheelchair for the majority of the time when out of the house.

Winter weather can often exacerbate symptoms especially pain

Winter weather can often exacerbate symptoms especially pain

There are steps that I, and others  living with a chronic illness  and chronic pain during the winter months.  These can include wearing thermals underneath warm clothing in order to lessen the effects of the cold temperatures on our personal chronic pain.  Hot water bottles, warm blankets, and snuggly pyjamas are also fantastic at helping us keep warm when in the safety of our own homes.  Although these steps can help us with the physical pain associated with our long-term conditions, they however do not lessen the emotional impact that the winter has on our psychological wellbeing.  Many people experience some form of SAD (Seasonal Affective Disorder) a form of depression associated with the reduced exposure to sunlight.  Light therapy which involves sitting in front or beneath a light box, as well as more conventional treatments for depression including cognitive behavioural therapy and sometimes antidepressants.

Winter can be a miserable time for many...and not a good time for those with chronic illness

Winter can be a miserable time for many…and not a good time for those with chronic illness – Pinterest

I have talked about positive psychology before in terms of helping cope with living with a long-term health condition.  One example of an exercise that is recommended within the field of positive psychology is keeping a gratitude journal.  A gratitude journal encourages individuals to write down at least three things that have made them grateful and happy on that particular day.   Research suggests that by doing this, it can change the brain’s thought processes and can even result in more positive thinking patterns.,  Therefore, in order to be more positive and happier during the winter months, despite the miserable weather perhaps we need to remind ourselves of the positive aspects of winter, and also to think of the reasons we should love winter.

So what are some of the reasons we should love winter?

The cold and wet weather during the winter months provide the ideal opportunity to stay indoors – this is the same for most people regardless of whether they live with a chronic illness or not.  I know for me personally when I tell others that I want nothing more than to stay indoors and lay down is met with surprise and disbelief during the summer.   Instead of respecting my wishes, I am barraged with well-meaning encouragement to venture outside for fresh air, which is made to sound like a miracle cure for all my ills.  In the winter on the other hand, friends and family are not surprised or even comment on my love of staying indoors beneath a warm blanket and enjoying a box-set binge, as let’s face it everybody wants nothing more than do the same when the bad weather hits.  As well as being not judged for spending so much time indoors, I also feel that during the winter I am more likely not to feel envious or that I have missed out on anything fun as friends and family are also spending the majority of the time at home in the warm and dry watching the new series of television programmes that tend to start when the weather starts to deteriorate.  Recently some of my favourite television programmes have returned for the new Autumn schedule such as Grey’s Anatomy and Criminal Minds.

Nothing more enjoyable than wrapping up warm during the cold winter weather or sit in front of a fireplace (if able)

Nothing more enjoyable than wrapping up warm during the cold winter weather or sit in front of a fireplace (if able) – Pinterest

Winter provides us with the perfect excuse to stay indoors and curl up with a thick blanket and a mug of delicious hot chocolate with marshmallows.  It furthermore provides us with the perfect opportunity to enjoy a riveting book; watch a film that you might never have otherwise watched via Netflix.  In other words, winter can provide us with the unique opportunity to bask in the enjoyment of being able to appreciate the little things that provide us with comfort and joy whilst also protecting ourselves from the atrocious weather.  Whereas summer is all about fast pace and cramming as much fun in as possible, winter is far more relaxed and allows us to savour each moment.

A mug of hot chocolate is so comforting during winter - always make time when out shopping!

A mug of hot chocolate is so comforting during winter – always make time when out shopping!

I also love going to bed during the winter months and getting beneath my delectably thick winter duvet.  For me this duvet is comforting, especially when feeling the effects of chronic illness.  Our winter wardrobes are also another wonderful aspect to enjoy during the cold and dreary months; to feel snuggly and safe beneath layers of warm layers of clothing such as big thick jumpers, woolly scarves and hats and thick socks when venturing outdoors.  I own a pair of Ugg boots which I constantly wear through the autumn and winter as they are so comfortable and also keep my feet incredibly warm and are one piece that are among my favourite items in my wardrobe and boots that I am often complimented on when out which makes me feel good about myself.

My ever so warm and snuggly ugg boots!!

My ever so warm and snuggly ugg boots!!

A further reason to love winter is the food!  Winter food provides comfort during the cold months.  Mince pies, apple pies, pumpkin pies and other seasonal treats that appear in the supermarkets are just begging to be served warm with cream or custard.  Winter vegetables can be roasted or used as ingredients for bowls of steaming and comforting soups or even baked into delectable pies. Chilly evenings also provides the perfect pretext to enjoy a steaming mug of hot chocolate topped with whipped cream and marshmallows or alternatively sprinkles of cocoa powder.  And if the weather is keeping you indoors, there is plenty of time to put everything you have learnt from The Great British Bake Off  (or other such cookery programmes!) into practice by baking cakes, assembling a gingerbread house or experimenting with the abundance of seasonal recipes that you have always wanted to try out but never found the time.

Lastly, the most important reason to love the winter season is all the exciting events that occur during this time. Halloween, Bonfire Night and everyone’s favourite Christmas!  These events provide excitement and wonder, as well as the opportunity to come together with family and friends whom we may not have seen for some time.  It is hard to dislike Bonfire Night for example, as throughout the country beautiful, colourful and vibrant lights are seen decorating the dark night skies.  Even if we are out of spoons or too unwell to attend a local fireworks display, it does not mean that we have to miss out on everything, as we can still enjoy firework from the comfort of our own homes, which I often do.

Doesn't everything look pretty and magical with fairy lights during the winter months?

Doesn’t everything look pretty and magical with fairy lights during the winter months? – Pinterest

Throughout November and December hangs the air of excitement and wonder as Christmas approaches.  Houses, shops and town centres are illuminated with colourful lights and vibrant decorations which looks beautiful and cheery against the dark and dreary winter nights.  Furthermore, with Christmas also brings a collection of wonderful food, heart-warming and cheerful family films, television specials, festive events and activities, jolly festive music as well as time spent with loved ones exchanging presents.  It is true that with Christmas also brings a lot of activities that can deplete the number of limited spoons but in my opinion it is worth it for the happiness and the formation of happy memories that Christmas brings.

What are your personal reasons for loving winter?  You can contact me via Twitter using @serenebutterfly or sending me an email at brainlesionandme@gmail.com.  Or comment below…

Life is anything but a fairy tale…

Sorry for the recent lack of updates on the blog.  Despite still being active on my social media sites such as Facebook, Twitter and Instagram, I however have struggled to find the time or energy to write a post for the blog.  I had been experiencing good days during the last posts that I published, but unfortunately as many of you living with chronic illness will relate to, these good days do not last, and so my health has slowly regressed back and therefore bad days have replaced the good days.

During my break from writing, I have found the time to watch some of the films that I had been wanting to see for some time.  I cried during ‘The Fault in Our Stars’ and was particularly enthralled with ‘Maleficient’. I was captivated with the story of the villain depicted in the classic Disney film ‘Sleeping Beauty’ and even more so by the wonderful performance by Angelina Jolie.

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I was particularly impressed by how Maleficient was not simply a retelling of the fairytale Sleeping Beauty.  Don’t get me wrong, I love fairy tales, my favourite being Beauty and the Beast, but let’s face it, they are all highly unrealistic.  They portray everything as being black or white; characters being either good or evil for example.  What I loved about Maleficient therefore was the portrayal of the eponymous character as being both good and evil.  Unlike with classic fairy tales, the story of Maleficient portrayed various shades of grey.

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This then got me thinking of life with chronic illness.  If we were in a fairy tale, our illnesses would be portrayed as an evil beast, much like Maleficient in Sleeping Beauty or Ursula from The Little Mermaid as examples.  Our lives would be darkened and ruined by the beast that is inside of us.  Each and everyday would be bad with no room for happiness, sunshine or joy.

However, just as real life is not simply black and white; I choose to believe that life with chronic illness is more like the portrayal of Maleficient; there is no good or evil.  I believe that even living with something as difficult as chronic illness, there are a lot of different shades of grey.  There are good times despite living with chronic illness, even though the bad days heavily outweigh the good ones.

I also choose to believe that during our lives with chronic illness, it can be portrayed as both a hero and villain just like Maleficient in the film of the same name.  It may sound strange to describe a chronic illness as a hero, given the severe and debilitating symptoms we have to live with because of it.  However chronic illness can also have a positive impact upon our lives as it can teach us things about ourselves that we might never have known.  Chronic illness can also give us strength and resilience to overcome many obstacles and limitations that our conditions can place in our path to our goals and dreams.  Furthermore, we can also become more empathetic and understanding as a result of our struggles with illness.  Living with a long-term health condition can teach us some invaluable life lessons that we may never have learnt if it wasn’t for illness, such as the importance of learning to slow down, and learning to appreciate the small things in life.   It is for these reasons therefore, that although due to severe and debilitating symptoms, illness can play the role of a villain in our lives, it can also learn to play the role of a heroine.

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The classic fairy tales such as Snow White and Sleeping Beauty have also stereotypically portrayed us females as rather feeble and fragile and thus needs to be rescued by a handsome and strong Prince.  Modern Disney films, such as Mulan and Frozen for example, have shattered these archetypes and have shown that females have the strength and power to rescue themselves from whatever trials and tribulations that life has thrown at them.  My experience of living with a permanent neurological condition has also taught me that we all have the power to rescue ourselves from our own battles in whatever form that they take.  Doctors, medications and other treatments for me and many others can only do so much, and it is often down to us as individuals to self-manage our conditions and find the little ways which ease our symptoms or makes us feel better emotionally.  It is up to us to save ourselves from the depression and emotional pain that can result from living with a long-term chronic illness.   It is our own responsibility to make sure we are happy and live the best life we can regardless of the limitations that are placed upon us due to chronic illness.

Classic fairy tales and Disney films are renowned for their ‘happily ever after’ and as we are all aware, in real-life, and especially a life with chronic illness happily ever after simply does not exist.  It does not mean that we cannot be happy, however we need to find our own idea of happiness, whatever that may entail.  Happy endings can be difficult to find as a result of chronic illness, but I would like to think that they can still be found, but perhaps it just means that we have to look that little bit more to find the rainbow through our personal storms.

Happy endings can be found despite chronic illness!

Happy endings can be found despite chronic illness!

Thriving and Exciting News!

Hello to readers new and old.

I hope everyone is doing well and have enjoyed the latest posts that I have written on the blog.

As loyal readers of the blog will know, I have developed my writing further by contributing to a new digital magazine for those young people living with chronic illness.  The Pillow Fort Magazine ethos is to provide a positive space for those living with chronic illness, and the magazine is a small part of their mission.

The latest issue is the 4th edition to be published and the theme was Thriving.  As a result therefore there are many submissions from those who also live with chronic illness who have not wallowed in misery due to their circumstances but how they have used their personal experiences of illness to grow and thrive.  Each page will inspire and lift your spirits.  It’s a fantastic read, I promise.

I wrote a piece on the chronic illness community and how that our experiences with illness allows us to grow and thrive as individuals and as a community.  I compare the chronic illness to flowers that grown and bloom after being inspired by a quote from Mulan – “The flower that blooms in adversity is the rarest and most beautiful of all”.

 

 

To find out more and to purchase your own copy of the magazine just click on the picture below. Copy-of-The-Pillow-Fort-3-1-600x600

 

If however you are unsure that you will  enjoy the magazine and so don’t want to spend the £3 for the magazine, The Pillow Fort Magazine is also offering a sample issue FREE which includes highlights from the first four issues of the magazine!  Just head on over to the The Pillow Fort website and scroll down to the Pillow Fort Magazine Sampler enter your name and email address and voila it will be sent to your inbox for you to enjoy and savour.

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In other news I am very excited to announce that I have been nominated for two awards for the upcoming WEGO Health Activist Awards.  Two members of the wonderful chronic illness community has nominated me for:

  • Best in Show: Blog
  • Best in Show: Twitter

I am s overwhelmed and humbled that there are people that have taken the time and thought of me as worthy of such a lovely accolade so I would like to thank those who nominated from the bottom of my heart.  This year, WEGO Health has set up a Nominee Directory where you can find out the other nominees, find out more information about them as well as the awards they have been nominated for.  Also, you can even endorse nominations by pressing a button and entering your name and email address.

Therefore, I am asking everyone who regularly reads my blog and enjoy my posts to take the time to endorse my nominations if you so wish.  You can view my page in the directory by clicking here.

And you can also take the time to thank the health activists and bloggers that have made a difference in your life or community by nominating them for one of the fourteen awards this year by going to the nomination page.

 

Life in a Spin

Dizziness.  Giddiness. Vertigo.  Lightheadedness.  Wooziness.  Disequilibrium.  Unsteadiness.  Faintness.

Whatever word you choose to describe it, dizziness is defined as “having or involving a sensation of spinning around and losing one’s balance.”

It is also a symptom that I have lived with since early childhood.  The reasons for the dizziness is as a result of my neurological condition; a long-standing brain stem lesion.  Although we know the cause of the dizziness, we are unsure of the reason why the dizziness and vertigo occurs, and what it worse we have no way to treat or cure this very life-limiting symptom.  In the past I have tried various medications as well as undertaking vestibular rehabilitation exercises but unfortunately nothing has worked in even decreasing the severity of the moving sensations that I have to live with twenty-four seven every day.

Dizziness is not just an unpleasant symptom; it is also one which is life-limiting (Click to Tweet)

Dizziness can send you into a spin

Dizziness can send you into a spin

This condition and the symptoms, such as the dizziness has changed me.  It has also affected every part of my life.

Dizziness has not only changed me but it also affects every part of my life (Click to Tweet)

I cannot stand without feeling my body swaying due to the balance problems that the dizziness and vertigo causes; I find it difficult to be able to leave the house on my own due to the disorientation that dizziness and vertigo can cause.  Some days that I am so dizzy and the spinning is so extreme that I am unable to get out of bed.

Through this whole experience and after living with dizziness for so long, I have come to learn how little dizziness and vertigo is understood within the medical community.  According to some online resources, dizziness is one of the most difficult complaints to assess because it is a subjective sensation with many differing descriptions of the experience.  Furthermore, doctors are also unable to directly and objectively measure dizziness.  And mirroring my own experiences, patients complaining of dizziness and vertigo will see a number of different specialists, as dizziness and vertigo can be caused by a multitude of different pathophysiological processes, thereby making diagnosis particularly difficult.

As a result of it not being understood within the medical community, it is therefore also not understood within the wider community.  That is why awareness events are so important.  Now, there may not be an awareness week for my particular diagnosis, but the American organisation VEDA (Vestibular Disorders Association) is this week helping to raise awareness of Balance or Vestibular Disorders this week (September 15th – September 21st) of which dizziness and vertigo is a classic symptom.

The vestibular system includes the parts of the inner ear and brain that process the sensory information involved with controlling balance and eye movements. If disease or injury damages these processing areas, vestibular disorders can result. – VEDA website

Vestibular disorders can also include the following symptoms:

  • Visual-spatial problems
  • Clumsiness
  • Fatigue
  • Holding head in a tilted position
  • Difficulty in concentrating
  • Tendency to touch or hold onto something when standing
  • Poor hand-eye coordination

See this informative infographic from VEDA to find out more about these disorders.

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There may not be an awareness week for my neurological condition anytime soon but I am happy to support an awareness event to raise awareness of a symptom that greatly affects my life.  I may not live with a vestibular condition myself, but after living with dizziness and vertigo for so long, I can understand and empathise with those who do.  So, I will help VEDA and stand in solidarity with everyone affected by dizziness, vertigo and balance conditions and do so whilst wearing my ‘Dizzy not Drunk’ t-shirt!!

 

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30 Things About My Invisible Illness You May Not Know 2014…

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I originally completed the ’30 things you may not know…’ meme back in 2012.  However, I thought it might be fun to complete these 30 questions again, not only to meet new (and old!) fellow bloggers but to also see how my answers have changed during the past two years.  It is true that as my condition has progressed and am now have the need for mobility aids such as a crutch and sometimes a wheelchair, my condition it could be argued is no longer invisible.  To some extent this may be true, however, I have also found that when I do use these mobility aids I do so with suspicion from others because I look ‘fine’ and in their minds I have no need for such assistance.  It’s as if they are expecting someone with a legitimate illness or disability to have a specific mark, branding them as such.  It therefore does raise the question about what exactly defines an ‘invisible illness’ doesn’t it?

  1. The illness I live with is…
    A neurological condition known as a long-standing brain stem lesion, as well as spastic paraparesis.  However, there is some debate that there may be more going on and therefore am going through tests and seeing more consultants to determine this.
  2. I was diagnosed with it in the year…
    2010
  3. But I had symptoms since…
    As long as I can remember, I am certain that I have had the stiffness and weakness in the legs since birth but went undetected for so long because I hadn’t realised that there might be a problem with my legs as I never knew anything different!  The vertigo and dizziness started in early infancy also but the exact age I am unsure of but I was very young.
  4. The biggest adjustment I have had to make is…
    Accept the limitations regarding my mobility and accept my need for a wheelchair.  I am often incredibly stubborn and will refuse to use my wheelchair, and by the end of the day I am in a lot of pain as well as having trouble moving around because of severe weakness in the legs.
  5. Most people assume…
    That because I am able to stand and walk sometimes when I have the wheelchair then it must mean that I am faking it all for sympathy or because of laziness.  Many people need to learn that because a person uses a wheelchair does not automatically mean that they are entirely dependent on one.
  6. The hardest part about mornings are…
    It has to be getting up out of bed!  Fatigue is another symptom that I suffer as a result of my condition and therefore it is very difficult to get out of bed as I still feel so tired.
  7. My favourite medical TV show is…
    It’s still has to be Grey’s Anatomy, although I am also addicted to Private Practice!!
  8. A gadget I couldn’t live without is…
    This is a tough question as like most people I own several gadgets which are all so useful in my daily life living with chronic illness.  But having to choose just one I would have to say my smartphone (Samsung Galaxy Note 3) as I am able to do so much with it and can be with me wherever I go.  For instance, thanks to applications such as Facebook, Twitter, Instagram and Pinterest I can work on things related to my blog and keep in contact with fellow spoonies, which is fantastic on days which are struggle and need someone else to talk to.  More than this I can take photographs, be reminded to take medications on time, play games, watch videos or listen to music – generally be entertained and distracted from pain, dizziness, and life from a chronic illness in general!
  9. The hardest part about nights are…
    Trying to switch off from the pain and trembling that I experience in my legs due to the spastic paraparesis.  I often experience insomnia because of these symptoms and it’s even been known to wake me up!
  10. Each day I take __ pills and vitamins…
    9 pills
  11. Regarding alternative treatments I…
    Do not use any, as in my case the condition is not treatable even with conventional medical treatments, only can attempt to control the symptoms.  I did enjoy a lovely and relaxing massage whilst on holiday earlier this year which I did find help with the pain
  12. If I had to choose between an invisible illness or visible I would choose…
    An invisible illness could be more positive in the way that people are more likely to treat you as everyone else
  13. Regarding work and career…
    I would love to have a career and full-time job but often worry if anyone would hire me due to the amount of time that I am unwell and also would question if I could hold down a job due to my legs giving way a lot and the inability to stand for long.  Am also not allowed to drive due to the severity of the dizziness and vertigo, and public transport is not an option as it requires standing for a significant period of time
  14. People would be surprised to know…
    That despite living with a neurological condition and dealing with severe symptoms everyday that I still manage to be positive!  Many people expect me to be depressed because I am stuck inside of the house for most of my time, and so am surprised that I am positive and upbeat.  Also, a lot of people love my positivity board which contains letters from friends, cards and posters with positive quotes and photographs of happy memories, all of which help me stay positive.
  15. The hardest thing to accept about my new reality has been…
    I am not like everyone else my age and cannot achieve the milestones that I was once looking forward to, passing my driving test being one.  Another example, is going out at night with friends, which I am unable to do due to the weakness in my legs, as well as the intense fatigue I experience at night.  It has also been hard to accept that I may need to use a wheelchair as my legs keeps becoming worse over time.
  16. Something that I ever thought I could because of my illness which I did was…
    It has to be going on a cruise.  Not only did I think it was out of my reach due to the severity of the dizziness relating to my neurological condition, but also I never expected me to be able to handle it, but I did and looking back the holiday was a fantastic experience, and between you and me we have just booked to go on another one next year around the Canaries!
  17. The commercials about my illness…
    Are non-existent as the condition is rare.  In fact it is so rare that I haven’t met anyone else with the same condition.
  18. Something I really miss doing since I was diagnosed is…
    Going on shopping trips with my Mum to our local city centre (Cardiff).  Since my legs have become so much worse am unable to go as a lot of walking is involved as well as not being able to queue in the big department stores as my legs often give way.  Also, large cities such as Cardiff can be very difficult for me to handle because of the dizziness, as it makes me very disoriented due to the large crowds, fluorescent lights in the shops and high ceilings and so on.
  19. It was really hard to have to give up…
    Doing all the exercise that I enjoyed such as going on my exercise bike or going on walks as not only is it beneficial physically, I often found it helped with mental well-being.  I also miss walking my dog as it’s something that both her and my Mum and I enjoyed doing together.
  20. A new hobby I have taken up since my diagnosis is…
    Blogging and writing.  If I had not ben diagnosed with this neurological condition then I would never have started blogging or meeting all of the wonderful people I have as a result of my writing.  I also never would have had the opportunity to contribute to the inspiring digital magazine ‘The Pillow Fort Magazine’ especially for those battling with chronic conditions.
  21. If I could have one of feeling normal again I would…
    Spend the whole day out of the house with dinner afterwards and maybe headed to a party after that!
  22. My illness has taught me…
    To listen to my body, and that we all know when there is something wrong.  To never settle when doctor’s are telling you there is nothing wrong when you know there is.  To keep moving forward and to never give up until you find a doctor that will listen and is determined to find out what is wrong.
  23. Want to know a secret? One thing people say that really gets under my skin is…
    “There are people much worse off than you”.  Yes, I understand this but it still doesn’t help!!
  24. But I love it when people…
     
    Listen to me and tried to understand even though it can be difficult due to the unpredictable and unusual nature of the illness.
  25. My favourite motto, scripture, quote that gets me through tough times is…
    It has to be “Life isn’t about waiting for the storm to pass but learning to dance in the rain”
  26. When someone is diagnosed I’d like to tell them…
    It is not the end.  You still have a lot to offer just need to be open to new opportunities.  You need to find a new normal instead of focusing on the past and everything that once loved doing but can no longer do.
  27. Something that has surprised me about living with an illness is…
    Although that I do not know anyone else with the exact same condition, I am still not alone.  There are many other people who experience the same struggles as myself and whom I can learn from and can support each other through the tough times.
  28. The nicest thing that someone did for me when I wasn’t feeling well was…
    Sending me a care package with things that I love and a beautiful card to add to my positivity board
  29. I’m involved with ‘Invisible Illness Week‘ because…
    To spread awareness of the difficulties faced when living with a chronic invisible illness; to educate people that although you cannot see the problem does not mean that it doesn’t exist.  That people with invisible illnesses are not faking or are lazy and that we should be careful when making snap judgements about people.  It’s a cliché but it’s true: ‘You cannot judge a book by its cover”.  It would also be nice to connect with others living with invisible illnesses like myself for support and friendship.
  30. The fact that you read this list makes me feel…
    I feel validated and supported so thank you!!