Once again it’s the most wonderful time of the year; and like the Christmases that have come before, we again have been inundated with various iconography associated with Christmas. Images such as Father Christmas, snow and Christmas trees adorn popular decorations, and greeting cards meant for the holidays.
However, in my opinion, there is one particular image that is often associated with the Christmas season, which is a perfect representation of those living with chronic illnesses. What is it, you ask?
It’s the snowflake!
It’s well-known that no two snowflakes are alike. Each one is entirely individual and unique – much like us spoonies. Not only are we individual, just like everyone else with differing interests and personalities, but also fits in with living with a chronic illness. Just as we are unique and individual, our chronic conditions and the way they manifest itself are just as unique. This can be especially true with neurological disorders like mine as well as conditions such as MS and myasthenia gravis (which are both known as a ‘snowflake disease’) because there are so many different symptoms and no two patients are likely to exhibit the same set of symptoms.
Snowflakes as well as being unique and individual, are also beautiful – just like the spoonies that I have had the pleasure of coming into contact with through my blog or my other social media sites. It is said that snowflakes are fragile, but when one or more snowflakes stick together, they actually become stronger.
During my journey living with this neurological condition, I have learned many lessons and one such lesson that chronic illness has taught me that there is indeed strength in numbers. On the days that my body has felt weak and fragile, and feeling that the hope that helps me through is diminishing, it is messages of support from fellow chronically ill people that really helps me through the dark days. These give me the strength to fight my symptoms and continue to live despite the often debilitating symptoms.
Recently, the symptoms that I live with on a daily basis such as the pain and trembling in the legs, the dizziness, fatigue, and weakness have been particularly debilitating, and as a result, I have been experiencing mild symptoms of depression that I often find accompanies periods of ill-health such as these. Part of these low moods, I have seen myself, comparing myself to others, particularly family and those friends who are close in age to myself, and feeling notably different to everyone else. And not in a good way.
Been a really difficult time for me lately…often feel so different from everybody else and not in a good way #spoonieproblems
However, snowflakes, and what they stand for can teach us that it is okay to be different from everybody else. It teaches us that being individual and unique is in actual fact a good thing and, it is these differences that sets us apart from anybody else, and what makes us special.
Therefore, perhaps when we know someone (particularly a fellow spoonie) who is struggling. Or who are feeling upset because of something which is affecting them and setting them apart, then maybe we should send them a card or a little present depicting a snowflake to remind them just how beautiful, special and unique they are – and that being different is more than okay.
Not only a beautiful piece of jewellery but a perfect gift for anyone who is struggling with being different…
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.
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.
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 closest around you, as they are subjective and is not perceptible to anyone else. And as those closest to 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.
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‘
http://www.youtube.com/watch?v=0QZsXWWtR_c
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?
Winter can be hard for those living with chronic illness and chronic pain. But even despite this, however, there are still many reasons for loving winter.
What Immediately Comes to Mind When You Think of Winter?
When imagining winter, which words or images are conjured up in your mind?
For many, they would answer with images such as the nights drawing in during the early evening. Heavy rain lashing against the windows. The sounds of the howling wind outside and fighting against the constant outbreaks of colds and flu.
This 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.
Winter is a time to dread. Summer a time where everything feels alive and happy and time of endless possibilities. Winter is indeed the cruellest 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.
The Unrelenting Horror of Winter When Living With Chronic Pain
For those suffering from chronic pain, winter can be a challenging time. The freezing temperatures can exponentially increase the amount of pain experienced, for example.
In my experience of living with spastic paraparesis (causing stiffness and weakness in the legs) the bitter cold weather and the constant downpour of rain increase the level of rigidity and instability that I experience, thereby increasing my pain levels.
During previous years increased levels 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
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 to lessen the effects of the cold temperatures on our chronic pain. Hot water bottles, warm blankets, and snuggly pyjamas are also fantastic at helping us keep warm. These steps can help us with the physical pain associated with our long-term conditions. However, they do not lessen the emotional impact that winter has on our psychological well-being.
The Emotional Impact of Winter on Emotional Well-Being
Many people experience some form of SAD (Seasonal Affective Disorder) a kind of depression associated with reduced exposure to sunlight. Light therapy involves sitting in front or beneath a lightbox. As well as more conventional treatments for depression, including cognitive behavioural therapy and sometimes antidepressants can help ease the symptoms of SAD.
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 regarding helping cope with living with a long-term health condition.
One example of an exercise 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 happy on that day.
Research suggests that by doing this, it can change the brain’s thought processes. It can even result in more favourable thinking patterns. Therefore, to be more positive and happier during the winter months, perhaps we need to remind ourselves of the reasons to love winter.
So what are some of the reasons we should love winter?
Reasons For Loving Winter: The Opportunity to Stay Indoors Without Judgement or Provocation
The cold and wet weather during the winter months provides the ideal opportunity to stay indoors. One that is the same for most people regardless of whether they live with a chronic illness or not. When I tell others I want to stay indoors; there is disbelief on their faces during the summer months.
I am barraged with well-meaning encouragement to venture outside, supposedly an apparent cure for all my ills. In the winter, on the other hand, others do not comment on my love of staying indoors. Let’s face it everybody wants nothing more than to snuggle beneath a blanket and enjoy a box-set binge when the bad weather hits.
As well as being not judged for spending so much time indoors, I also feel that I am not going to feel envious or that I have missed out on anything fun. Friends and family are also spending the majority of the time at home, choosing to stay in and binge the new series of TV programmes that tend to start when the weather begins to deteriorate. Recently some of my favourite television programmes have returned to the 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) – Pinterest
Reasons For Loving Winter: Comfort, Blankets and Netflix!
Winter provides us with the perfect excuse to stay indoors and curl up with a blanket and a mug of hot chocolate. It furthermore provides us with the ideal opportunity to enjoy an exciting book; or 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 give us comfort and joy while also protecting ourselves from the atrocious weather. Whereas summer is all about the fast pace and cramming as much fun in as possible, winter allows us to savour each moment.
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 enjoyable aspect of enjoying 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 continuously wear through the autumn and winter. They are so comfortable and also keep my feet incredibly warm. These boots are among my favourites and which people often comment on when out, which makes me feel good about myself.
My ever so warm and snuggly ugg boots!!
Reasons For Loving Winter: The Delicious and Comforting Food and Drinks on Offer
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. Winter vegetables can be roasted or used as ingredients for bowls of steaming 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 sprinkles of cocoa powder. And if the weather is keeping you indoors, there is plenty of time to put everything you have learned from The Great British Bake Off into practice. Assembling a gingerbread house or experimenting with the abundance of seasonal recipes that you have always wanted to try but never found the time.
Reasons For Loving Winter: Halloween, Bonfire Night and Christmas!
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 and the opportunity to come together with those whom we may not have seen for some time. It is hard to dislike Bonfire Night, as beautiful, colourful and vibrant lights are seen decorating the night skies.
Even if we aretoo unwell to attend a local fireworks display, it does not mean that we have to miss out. We can still enjoy the 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? – Pinterest
Throughout November and December hangs the air of excitement and wonder as Christmas approaches.Houses, shops, and town centres illuminated with colourful lights and vibrant decorations which are beautiful and cheery against the dark and dreary winter nights.
Furthermore, with Christmas also brings a collection of beautiful food, heart-warming and cheerful family films. Television specials, festive events and activities, happy festive music as well as time spent with loved ones exchanging presents.
It is true that Christmas also brings a lot of activities that can deplete the number of limited spoons. Still, in my opinion, it is worth it for the happiness and the formation of happy memories that Christmas brings.
What are your reasons for loving winter?You can contact me via Twitter using @serenebutterfly or sending me an email at brainlesionandme@gmail.com.
Sorry for the recent lack of updates on the blog. Despite still being active on my social media sites, 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. Still, unfortunately, as many of you living with a 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. And days where life has been anything but a fairy tale.
Finding Solace and Comfort in Films
But, I have found time to watch films that I had wanted to see for some time.
I cried during ‘The Fault in Our Stars’ and enthralled with ‘Maleficent.’
Captivated by the story of the villain depicted in the classic Disney film ‘Sleeping Beauty’ and even more so by the enchanting performance by Angelina Jolie.
And I was particularly impressed by how Maleficent was not merely 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, or characters being either good or evil.
What I loved about Maleficent, therefore, was the portrayal of the eponymous character as being both good and evil. Unlike classic fairy tales, the story of Maleficent portrayed various shades of grey.
Fairytales: A Metaphor of Life With Chronic Illness?
It then got me thinking of life with chronic illness.
If we were in a fairy tale, our illnesses would play the character of an evil beast. Illness becoming the role of a villain, much like Maleficent in Sleeping Beauty or Ursula from The Little Mermaid.
Our lives would be darkened and ruined by the beast that is inside of us.
Every day would be bad with no room for happiness, sunshine or joy.
However, just as real life is not merely black and white; I choose to believe that the experience of living with a chronic illness is more like the portrayal of Maleficent; no one thing is purely good or evil.
But life, and especially life with a chronic illness, is anything but a fairy tale.
Chronic Illness: A Hero Or A Villain?
I believe that even living with something as tricky as a chronic illness; there are a lot of different shades of grey.
There are good times despite living with chronic illness, even though the ‘sick’ days heavily outweigh the good ones.
I also choose to believe that chronic illness can be both a hero and a villain, much like Maleficent.
It may sound strange to describe a chronic illness as a hero. Many would not think of such a title given the severe and debilitating symptoms we have to live with because of it.
However, chronic illness can also have a positive impact on our lives. It can teach us things about ourselves that we might never have known.
Chronic illness can also give us the strength and resilience to overcome many obstacles and limitations that our conditions create.
Furthermore, we can also become more empathetic and understanding as a result of our struggles with illness.
The Lessons That Chronic Illness Can Teach Us
Living with a long-term health condition can teach us some invaluable life lessons. Ones that we may never have learned if it wasn’t for illness. Such as the importance of learning to slow down and learning to appreciate the small things in life.
The severe and debilitating symptoms of chronic illness is the predominant reason that it plays the role of villain in our lives. But the lessons it teaches us proves that it can also play the role of a heroine.
Classic fairy tales have stereotypically portrayed us, females, as rather feeble and fragile. And in of rescuing by a handsome and athletic Prince
Modern Disney films, such as Mulan and Frozen, for example, have shattered these archetypes. They have shown that females have the strength and power to rescue themselves from the trials and tribulations that life has thrown at them.
My experience of living with a neurological condition has taught me of our abilities to rescue ourselves from our battles in whatever form that they take. Doctors, medications and other treatments for me and many others can only do so much. It is often down to us as individuals to self-manage our conditions. As well as finding little ways to help ease our symptoms or that which 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 responsibility to make sure we are happy and live the best life we can, regardless of the limitations upon us due to chronic illness.
Life Is Anything But A Fairy Tale
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 merely does not exist. Life being anything other than a fairy tale.
However, we need to find our 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 do exist, but perhaps it means that we have to look that little bit more to find the rainbow through our storms.
Happy endings can still be found despite chronic illness!
