Well, today marks the start of a brand new start month.
The start of something new – whether it be a new day, month or year.
It is like a fresh, white piece of paper, in which the past and everything that has come before forgotten, and instead, we are allowed to start afresh.
To start our story anew.
It opens up new possibilities and opportunities and allows us the hope for a better today and tomorrow (and beyond).
And this is most important when living with a long-term health condition. To live with illness every day is most difficult, and perhaps one of the most challenging aspects of living with a chronic an excellent is the unpredictability of it and the unknown of what each new day will bring.
Even with every little sign of illness such as a headache, for example, brings the fear of the start of new symptoms or even the possibility of a deterioration in our illness narrative. Therefore, hope is a vital thread for us to hold onto as it allows the possibility of a life without chronic illness and our lives dictated to by our symptoms.
During the recent weeks since my last blog post, I have been trying to remember these points.
As much as I have been trying to remain positive and to hold onto the invisible thread of ‘hope,’ I, however, have been living with the storm clouds above my head.
Just before the beginning of 2015, I had the hope that this will be a really good year. Don’t get me wrong; I do not have the irrational belief that I would miraculously improve during the coming year. As I had a few good weeks before Christmas, I did have the hope however that it would be the year that my symptoms would not deteriorate and I would not experience another decline in the severity of my symptoms.
It would seem that this particular thread of hope has unravelled.
In fact, these past few weeks has been the hardest weeks that I have experienced concerning my illness for a long time. It often feels that my body is taken a severe battering from all of my symptoms.
The dizziness has been so severe, that even doing the simplest things extremely difficult. The trembling and weakness in the legs have also been very relentless; my legs are feeling extremely jelly-like, that recently I have lost all confidence in being able to visit our local town centre and walking around the shops. Using my wheelchair is one option, however, due to the severe dizziness and the constant perceived motion that I am experiencing, it would make me feel even more nauseous.
Everyday of late has felt like an uphill battle from the moment I get up out of bed until I go to bed later that day. Because of the severity of the dizziness, nausea, weakness as well as the increased levels in fatigue, has meant that I often just want to go to bed and burrow myself under my covers and stay there for the foreseeable future. However, I have not given into my longings and have been pushing myself to still going out, although am finding my trips out have been considerably shorter than previous months.
During my last post, I discussed the feelings of loneliness and isolation that can often accompany chronic illness, and during this recent battle, these feelings have unfortunately only increased.
Perhaps one of the main reasons is not letting anyone in my close circle of friends and family know just how bad things have gotten. Of those who are in my tight circle of confidants, I have tried reaching out, not getting an immediate response when I actually in need of someone. It has often only increased the feelings of depression. Often thoughts of whether I’m liked within my circle friends usually follow, stupid I know but perhaps illustrates how difficult things have gotten recently.
I am trying to think of some ways to widen my social life, and perhaps make way for new friends, maybe even considering the social network Meet Up.
Or setting up a group for those like me who are living with a chronic illness or disability and who are also socially isolated because of it, just a thought in progress at this stage but would love to hear your thoughts and whether anyone has had any success with the site.
At the moment I am dealing with dark storm clouds but still, have hope for the appearance of a bright and beautiful rainbow in the hopefully not so distant future…
When living with a chronic illness, any chronic illness there are of course many symptoms that we are forced to live with as a consequence. Both physical and psychological effects of living with a long-term health condition such as the neurological condition that I live with everyday. Perhaps one of the most significant and common psychological repercussions of living with a chronic illness, which is not always discussed is loneliness.
Loneliness is often discussed in relation to the elderly. It is often seen as a consequence of getting older. However, loneliness is a feeling that can strike at any age and whatever the personal circumstances of the individual concerned. In my personal experience, through personal experience and with engaging with those within the chronic illness and the ‘spoonie’ community, loneliness can also be very much evident when living with chronic illness. Not only is loneliness is felt in terms of living with a chronic illness itself, in the feeling that no else understands what it is like with living with such an illness. However, loneliness can also manifest itself in the physical sense – the lack of company. One often consequence of being diagnosed with a chronic illness, is that friends can disappear from our lives. Many cannot handle seeing a friend being in pain, or cannot understand when plans are often cancelled due to the onset of debilitating symptoms. Living with chronic illness can often result in many hours spent alone in our homes. Hours spent lying in bed or on a comfortable sofa. Hours spent binge-watching boxsets, often because a lack of other options and to fill the deafening silence that surrounds us.
Holidays are a time where loneliness and isolation feels more evident when living with chronic illness
Being alone is something that I routinely have to deal with as my parents are often working and have few friends living nearby that have the time to visit and keep me company on those days in which my symptoms are particularly bad. It was on New Year’s Eve and New Year’s Day this year however, the feeling of loneliness and isolation was particularly evident. Like previous years, I celebrated the start of New Year alone, whilst my parents were sleeping upstairs (both were unfortunately started work early the next day) and as I had no contact with anybody and no-one had bothered to phone or text me to wish me a Happy New Year the feelings of loneliness were exacerbated. I felt jealous whilst watching the live New Year celebrations on television and seeing those people who were friends and family for the night meant for celebration, whilst I was sat on my own. The first day of a brand new year also started on my own in an empty house with only a dog whose only interest was sleeping. As cards drove onto our street and emptied with the arrival of visitors to other houses in my street, I felt even more alone and felt incredibly low.
It’s frustrating living with a neurological condition like mine. Due to the symptoms which are particularly debilitating such as the dizziness and weakness in the legs (which are unpredictable and it’s not known when they may give way), I am not able to get out of the house alone. Therefore, as a result it makes it even more difficult to be able to go out and make new friends. It’s as if my neurological condition has torn down bridges between myself and the life that I want to lead, and instead has built a wall around me, trapping and confining me.
It is of course, easy to make online friends or even penpals which I have been trying as a way to quench my thirst for human interaction and companionship. These are great substitutes and an easy way to make new friends, but I still crave face-to-face interaction with someone around my own age over a cup of hot chocolate. Isn’t that we all want in life? Plenty of friends that we can count on during the good and bad times in our lives? How to achieve that when living with an illness that prevents you from leaving the house unaided is still a huge question that remains.
Although that I hope to gain new friends during the coming year, and hoping that I will have people to celebrate the start of 2016 with…
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.
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?
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In my opinion, one crucial component of surviving life with a chronic illness is hope.
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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.
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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.
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