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…
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!
Imagine you are a marathon runner, struggling at the half-way mark. You are fatigued, suffering from muscle cramps and out of breath. However, you are determined to complete the marathon and cross the finish line.
So, what spurs you onto the finish the marathon despite the pain and fatigue? I can imagine that one thought that would help is to know that the end is in sight and awareness that the pain and fatigue will eventually end.
Unlike marathon runners, for those living with chronic illness, there is no end in sight of the pain and fatigue that we endure
Life with an invisible chronic condition, however, is in no way alike to the marathon analogy above. There is no knowledge that pain, fatigue or other symptoms will end when living with a chronic illness. There is no finish line when living with an invisible chronic illness. The question, therefore is if we do not know when the pain, fatigue or other symptoms that torments us will end then what help us get through our lives with a chronic illness?
[Tweet “There is no knowledge that pain or fatigue will end when living with a chronic illness”]
In my opinion, one crucial component of surviving life with a chronic illness is hope.
[Tweet “One important component for surviving life with a chronic illness is hope.”]
Hope that despite living with debilitating and life-altering symptoms, that we can still lead a ‘normal’ and happy life.
Hope that the symptoms will eventually ease. Hope that one day there may be even a cure.
For those living with an invisible chronic illness, the hope that they will be believed and taking seriously as many as of you will have experienced; many are disbelieving of any disabilities or conditions because there are no outward signs of there being anything wrong.
The hope that everything will be OK.
Hope is essential for every person, but perhaps it is more necessary for those battling chronic illnesses as it is vital for pulling us out of the deep trenches of pain, hurt and depression that living with an illness can cause.
Hope motivates us to push forward and to keep thriving through even the difficult times. In my experience, when my symptoms are particularly severe and perhaps am stuck in bed because I am unable to get out due to weakness, it can help therefore to believe that tomorrow will be a better day. Maintaining hope during hardships can make it slightly less difficult to bear.
[Tweet “Hope is what motivates us to push forward and keep living through the difficult times.”]
Before the diagnosis of a chronic illness, we have hope for the future and the plans we create because the possibilities that are ahead of us are endless. However, after a diagnosis of a chronic illness, there is suddenly a huge question mark over our futures and the possibilities we envisioned for ourselves.
The future is uncertain. Due to the uncertainty of the future, our faith waivers. How do we maintain hope when the life we had known has suddenly changed? How do we continue to hope when we experience more bad days than good?
The truth is that each moment we are in chronic pain or affected by the symptoms associated with our chronic illness, we choose our attitude towards it.
Ergo, we can choose to be negative and resentful towards our situation. Or we can choose hope and positivity.
I often used to focus on all the ways that my neurological condition limited my life.
Instead of focusing on everything that I am still able to do, I instead focused on the things that I was now unable to do.
This type of cognitive thinking not only can lead to depression and anxiety but can also make you feel inferior to your peers.
Now, I try and focus on everything that I am still able to do, and especially those that give me joy and happiness.
It instills me with hope as well as the reminder that despite the limitations placed upon my life, that I still have things to offer the world.
Anyone reading this who is is living with a chronic illness, know that you still have something to offer and have lots that you are still able to do despite there being things that you can no longer to do.
Illness is hard; there is no doubt about it. From my experience, I know that trying to maintain hope can be extremely difficult as sometimes it can feel that there is nothing to be hopeful for.
But there are things out there that can be healing; things that can make you feel hope still exists even through the darkest of times.
Simple pleasures every day can help alleviate suffering from pain, nausea or fatigue.
These little delights do not have to be expensive or grandiose but can be found in the simplest of things, such as watching a favourite comedy, enjoying a cup of your favourite tea, hugging a pet or listening to a favourite album. Whatever works for you.
Try writing your favourite things down in a notebook; often when living with illness we can forget, and reminding ourselves of the fun activities we enjoy can help bring joy and hope.
To conclude, hope is just one of the components to be able to survive life with chronic illness.
Hope is the line between living a happy life despite chronic illness or being consumed by the negativity that illness can create.
Allowing illness to consume our lives, and focusing on the limitations that it places upon us can, therefore, lead us to lose our identity to our conditions.
As the spiritual teacher Eckhart Tolle said: “As long as you make an identity for yourself out of pain, you cannot be free of it.”
By choosing hope, however, we can lead a productive life filled with the pleasures that heal us and brings us joy and free from pain.
[Tweet “By choosing hope we can lead a productive life filled with the pleasures that bring us joy.”]
Living with a neurological can be difficult – at times, it can be bearable, with symptoms although always present, they are however manageable.
At other times, however, symptoms are out of control; life feels as if you are on a battlefield – your condition and its symptoms are at war with your brain and the rest of your body.
[Tweet “When symptoms are out of control, it can feel you are at war with your body”]
During recent times, my experience living with a neurological condition has been the latter – with symptoms becoming out of control, and everything being a struggle.
I think that what has been particularly tricky recently is because all the symptoms that I experience are out of control all at once. The dizziness has yet again been very severe, which has left me feeling incredibly nauseous a lot of the time. And not forgetting the severe trembling and pain in the legs, oh and not ignoring the terrible fatigue; hampered by episodes of insomnia.
Of course, it is not pleasant when even one symptom is out of control but is at least a lot more manageable dealing with one such symptom than several symptoms at once.
So, how do we cope when our conditions are out of control? How do we deal when we feel at war with your own body?
I have learned that often we need to hold on. Hold on until it passes.
As I would like to believe all bad times, whether it be because of a neurological condition, another chronic illness, bereavement or even a break-up, passes with time; just as clouds pass over to reveal bright, beautiful sunshine.
I choose to hold on to hope – the hope that it will pass.
[Tweet “I have learned that often we need to hold on. Hold on until it passes.”]
Choose Hope! My lovely badge from the wonderful Itty Bitty Book Company
But just as much as we need to hold on – hold on to the hope that it will get better; those symptoms will improve given time, we also need to let go.
To let go of everything that we cannot change.
As much as I realise that we should let go of the worry and sadness of things we cannot control; I understand that it is often easier said than done. I admit that I find it difficult at times, and find myself getting upset with what I cannot do or find challenging as a result of the neurological condition. However, I try my best to keep the negative thoughts to a minimum and attempt to see the silver lining in the particular situation (e.g., not being able to get out of bed). I mean, who doesn’t love an excuse to have a PJ day and watch films all day?!) and accept that this is my reality.
[Tweet “We often need to accept the reality of our chronic illness and let go of things we cannot control.”]
There are certain aspects of my condition that I cannot control, such as the symptoms and the effects that these symptoms have on my life. I do have control, however, on how I choose to deal with the condition. It is not easy, however, especially when the symptoms are very severe. The way that I choose to deal with this illness is through my writing and sharing my experiences with others, volunteering for great causes, reading books, laughing and talking with friends, and watching my favourite films and television programmes. Those are some of the activities that I do to make me happy and help me forget that I am a person living with a neurological condition as well as distracting myself from the symptoms that haunt my life every day if even it is for a short time.
[Tweet “There are aspects of chronic illness that we cannot control, but we can control how we deal with it.”]
So, to help me cope with living with a neurological condition, I both hold on and let go! I hold onto the positives and let go of everything which I cannot control. How do you cope with the bad times and dealing with a life-long illness? How do you hold on or let go when life is difficult?
