Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based on given prompts.
Thursday 16th April: Life Goal
What’s one thing that your 10-year-old self thought you would do? Can you still do it? How would you approach it to make it happen?
Me at ten years old really seems like a lifetime ago; more than the nineteen years that have passed since.
In all honesty, I cannot remember anything that I thought I would do as an adult. By that age, the dizziness that now is constant in my life had started. At ten, the dizziness was not constant but was experiencing episodes of severe dizziness and vertigo. These episodes were becoming very frequent, and as a result, it felt like most of my time was spent waiting for the next attack.
As at the age of 10, I was not really aware of what was happening in regards to my health and the reasons for the dizziness; but experiencing frightening symptoms at a young age can be anxiety provoking. It makes you aware of the present, constantly on edge for the next attack. As a result of waiting and worrying for the next attack of the dizziness, I was therefore not thinking or making plans for the future. I was too preoccupied with the present and the symptoms that were afflicting my life.
Life often has a way of making us look at the past, present and future
Although, as a child who has always been studious, I suppose that I have always had the wish to further my education and attend university. At that age, like many children at that age, my career aspirations were constantly changing; from wanting to become a teacher at one point to wanting to become a nurse during another. Even if I do not make any more of my past aspirations a reality, at least I have made that university plan a reality, gaining a degree in Psychology. Attending university and getting that degree whilst living with a neurological condition, and battling against the dizziness, fatigue, and pain was not easy and had to have a lot of help (such as a buddy to take me to lectures) from family as well as the university staff to make it happen.
Fast forward to me at twenty-nine and I suppose I still tend to focus on the present (and occasionally on the past) and not on the future. It can be scary and worrisome to make plans for the future when living with a chronic illness, as we have no control or even an idea as to what our health will be like in months or years to come. Experience from having to cancel plans with friends as a result of chronic illness, warns us of the perils of making short-term plans, so making more long-term plans is even more difficult.
Over the past several years, the symptoms caused by my neurological condition, have become increasingly worse, so looking ahead to the future is a frightening prospect at the thought that in the years to come, my condition will be even worse than it is, therefore, perhaps when living with a chronic illness it is best to live in the present and appreciate all the little happy moments that happen in the here and now.
Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon given prompts.
Thursday April 9th: Challenger
Share with readers about a time you had to overcome a daunting challenge. What words of encouragement would you share with others who find themselves facing similar difficulties?
The last daunting challenge that I had to face, and one of the biggest challenges that I’ve faced for a long time, was our holiday in May of last year.
The holiday was a fifteen-night cruise around the Mediterranean Sea, visiting ports including Cadiz, Barcelona, Livorno (Florence) and Civitavecchia (Rome).
Not only was the first time that I was to go on a cruise, but it was also the first holiday I would have been on, since the deterioration of my symptoms such as the dizziness and weakness in my legs.
The magnificent ‘Adventure of the Seas’
I mentioned in a recent post, about the anxiety provoked by going to new places or experiencing anything new can be for someone living with a chronic illness. Not only do visiting or experiencing anything new raises a lot of ‘what if’ questions (What will I be like? What if I become ill? for example) but as chronic health conditions often flare, we therefore do not know how our conditions are going to be around the time we are away.
Furthermore, as someone living with a chronic illness, familiarity is comforting. Being surrounded by everything that is familiar is comforting; they hold special memories, and know familiar places like the back of our hands and if we become ill we know exit strategies or places easily accessible to recuperate until we feel better.
We may be missing out on incredible adventures and challenges if we don’t push our comfort zones
Being out of our comfort zones, therefore is uncomfortable and scary. The fear of the unknown is overwhelming. And this is exactly how I felt for days leading up to the cruise, especially as I was also experiencing a bad time with my symptoms at the time. There were times, I admit that I really didn’t want to go, but looking back, I was so glad that I did. Here are some words of advice and encouragement that I would give for anyone in the same position:
Talk through your fears and worries with somebody else, preferably someone going with you on the holiday (or whatever situation you are in). Our minds will very often catastrophise things, and these thoughts often become out of control when we bottle them up. So, talk through the worries and anxieties with another person and then talk through coping strategies and action plans for various possible scenarios
Make an appointment with your GP and ask for some extra medication to see you through the holiday. I was so glad that I did, as because I was experiencing a sudden deterioration in symptoms, the doctor prescribed me some extra medication for the worsening pain which really helped during the cruise and helped with sleep
Do not focus on what you cannot do, but enjoy and make the most of what you can and what you enjoy! On the cruise, as I was feeling so bad for the majority of the time, I found that I was unable to do things that I was looking forward to such as getting off the ship and visiting places like Rome and Florence. At the time, however, I spent so much time being upset and frustrated at not being able to do it, that I forgot to enjoy the little things that I was able to do, such as the relaxation and pampering in the solarium and using the wonderful facilities such as the jacuzzi, which really helped to ease some of the pain
Relax and enjoy! Holidays are all about resting and relaxing (in my opinion), and everyone has different ideas on what this entails. If this means, lying on sun loungers all day, or reading by the pool then do it! Don’t compare your holiday experience with somebody else. Make the most of what you are able to do.
Feel the fear and do it anyway! If there is anything that I learnt during the daunting challenge last year, it was definitely to worry less and enjoy it more. Going on holiday with a chronic illness is challenging, however, it is also very worth it. It allows not only a break from the ‘spoonie’ routine of doctor and hospital appointments but also allows a welcome respite from the confines of the four walls of our homes where we spend a lot of our time. So, just go and make wonderful and lasting memories to cherish for many years to come!
Regular readers of my blog, and especially those who follow me on social media will know that life recently has been very tough due to the symptoms that are caused by the neurological condition that I am now forced to live with. The symptoms associated with my neurological condition such as dizziness, fatigue, pain as well as the severe weakness and trembling in the legs have all deteriorated. And as a result of this deterioration, it has resulted in the loss in the ability to do a lot of the things that once came so easily, or those activities that I enjoy participating in. One example, is the great difficulties that I have experienced in visiting our local high street. Before this sudden deterioration, I found it so easy to be able to park in the town’s car park and walk the moderate distance towards the top end of the town to visit the shops that I like to browse and buy everything that I need. However, recently due to the deterioration in the symptoms in my legs (the pain, trembling and weakness) even the short walk from the car park to the shops have felt more like the prospect of walking Mount Everest.
Dealing with symptoms can often feel like an uphill battle…
As a result, my carer has instead had to use the disabled parking bays in the town centre itself, so that I am able to use the amenities that I need to use, and still be able to go to the shops that I like to visit. This arrangement has been far easier as they are extremely close to all the shops that I regularly shop at, but in all honesty, some days it is still a struggle to go shopping because of the severe weakness and trembling in the legs. The dizziness, has also caused a very big obstacle in going out because it has become so intense, and has resulted in me having to wear a hat when visiting places (wearing a hat helps to limit the exposure to triggers that can cause vertigo, double vision or make the dizziness worse).
Last week was a particularly bad week, and a trip to town was cancelled after my legs almost gave way in the middle of town. Instead, because the pain and weakness was so bad, my carer and I returned to the house and watched a film. It is bad mornings with chronic illness like these which can be difficult for our morale and self-confidence; and very often it can feel that our day is already over thanks to chronic illness, unable to accomplish anything because of debilitating symptoms and so instead we find ourselves spending the rest of a ‘bad day’ spent in bed or lying on the sofa watching a marathon of our favourite TV series (my guilty pleasure of the moment is One Tree Hill).
However, I recently learnt that it does not have to be this way. I found a blog post that read:
Today is not over yet.
And it is true. At the time, I wrote off the day that my legs decided not to work properly and had to spend the morning watching a DVD instead of the shopping trip I had planned. But that was not the end of the day. After the film, and after I regained enough strength in my legs, my carer and I took a short drive to a nearby coffee shop and had lunch. It actually turned out to be a lovely trip out and exactly what I needed to take care of myself and my body against the effects that my condition has had on my life. And perhaps ‘Today is not over yet’ is a mantra that we spoonies need to remember. Just because a day has started off bad because of the effects of chronic illness does not mean the day will be bad. It does not even mean that the day is over.
Finding joy can often be like seeing a rainbow appearing behind clouds…
We can find joy in the little things on the bad days – a letter or card from a dear friend landing on the doorstep, a cuddle from a furry friend, a favourite song on the radio, someone making our favourite meal. Our silver linings can come from the smallest of things.
So, our chronic illness may have meant that we have frittered away our time doing as little as possible, however as the quote suggests it does not mean that our day is over. We are still here and we are still very much alive and as long as we are it is not to late to do something, to do anything. It can provide the perfect opportunity to pursue some self-care practices in order to take care of not just our physical health but also our psychological health. A few self-care activities may include:
having a soothing bath
meditating
reading
pampering yourself, e.g. getting hair done or even a manicure
crafting
can even be as simple as setting limits for yourself
Even if you do end up doing something, it may be something that we hadn’t planned on doing or even wanted to do. However, it might just end up being something we needed or better than originally planned. Just like my impromptu visit to a local coffee shop.
So next time, you have had a bad start (or at any point of the day, really) to the day and your thought is navigating towards writing the entire day off as a bad one, just remember:
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.
