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.
Saturday 4th April: Creature of Habit
What good habits (health or otherwise) do you have? Do you have a routine that you follow every morning? Are there any bad habits you wish you could break?
As someone living with a chronic illness, my obvious morning routine consists of making sure that I take my daily medication to help manage the symptoms caused by my neurological condition.
Routine is something which is defined as ‘a sequence of actions regularly followed.’ Therefore, a routine follows a predictable pattern.
The only thing predictable about living with a chronic illness, however, is the unpredictable nature of our daily lives.
As a result, being able to maintain a routine is extremely difficult as we never know how we are going to feel from one day to the next. We do not know whether our bodies are going to cooperate on that particular day. About my own experiences of living with a chronic illness, due to spastic paraparesis, my legs are weak, and often there are days that I am unable to get out of bed due to the severity of the weakness. When these days occur, therefore any routine and habits that I do follow become impractical.
It is not only the physical symptoms that make it difficult to follow a daily routine successfully, but other symptoms such as pain, insomnia, and fatigue are also obstacles in the ability to maintain a routine. Due to fluctuating pain levels, I often find it difficult to sleep. As a result, my sleep patterns become disordered and out of kilter; finding myself waking early in the morning one day and sleeping in late the next. And fatigue is the most significant hurdle in my opinion as very often you feel too exhausted to be able to do anything besides lying down and watching television!
Regarding wishing, if there were any bad habits, I would like to break, I suppose I would choose to check my phone less! I do check it often, as it often feels that it is my most significant connection to others (through social media) and the world outside my house.
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.
Friday 3rd April
We love random acts of kindness. Write about a time that you benefitted from the kindness of a stranger, or a time when you were the one extending a helping hand. How did you feel?
“Try to be a rainbow in someone’s cloud” – Maya Angelou
A random of kindness is defined as a ‘selfless act performed by a person or people wishing either to assist or cheer up an individual person or a group of people’.
Think about how you would feel if you were to receive a random act of kindness by a stranger (or unknown person). It can positively influence your entire day, right? It certainly does, I know from personal experience that small acts of kindness that has been afforded to me makes a bad day just a little brighter.
Random acts of kindness does not even have to be big gestures – letters from a pen pal, a small gift from Mum or even a smile from a stranger are small tokens that can turn a day from being bad into a good day.
But perhaps being on the receiving end of a random act of kindness can often mean so much more when we are struggling and going through a particularly rough time due to chronic illness.
One personal anecdote of being on the receiving end of a random act of kindness only happened a few months ago. As previously mentioned, the symptoms that I experience as a result of my neurological condition were particularly severe, and was struggling with even the basic of tasks. I felt that I was so abnormally different to everyone else my age and frustrated over the limitations that my condition places on my life.
A couple of weeks passed by, and a mysterious package arrived on my doorstep (it was mysterious in the sense that I had not ordered anything). Inside the said package, was a beautiful necklace of a snowflake with a message printed on a card, which read ‘Let this snowflake remind you how unique and wonderful you are’.
A beautiful necklace with an equally beautiful sentiment
To this day, I still do not know who sent this beautiful necklace but I am extremely grateful to whoever did as this little gesture let a little sunshine into my life, when it was full of storm clouds. Not only did this act of kindness brighten my day but it was also a wonderful reminder that is okay to be different, and it is our differences that make us special. Our uniqueness is what sets us apart and makes us the person we are. In addition, it was lovely knowing that somebody thought of me enough to find the necklace and send it to me. And of course, the person must have been particularly special for extending the kindness to me but also wanting to stay anonymous.
Isn’t that the most wonderful act of kindness?
And now I have joined a wonderful Facebook group to send letters and small gifts to others in a similar situation to myself who are struggling. Paying the little random act of kindness forward to someone else in need.
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 2nd: Key to Happiness
What do you think is the key to happiness? Is it being able to overcome a hard time? Laughter? Maintaining a positive attitude? Tell us what you think and why.
Happiness is simply defined as ‘the state of being happy’.
The definition itself may be universal but the meaning behind the word is different for every individual. Just like we all have different likes and interests, what makes us happy is different for all of us.
However, modern life has taught us that happiness is contingent upon our accomplishments, and not having any troubles to speak of. On this basis, therefore, a person such as me living with a chronic illness which causes a lot of troubles in my day-to-day life, should not be happy. This is cannot be further from the truth as many of the happiest people whom I have known over the years as had to endure some sort of hardship of some kind.
“Happiness is a journey not a destination” is a fantastic example of the depiction of happiness in our modern lives; we are so focused on the end result which we think will bring us happiness, we forget however to appreciate the simple day-to-day pleasures. We are too busy rushing around to see the beauty of the world around us.
One of life’s simple pleasures
Living with a chronic illness, at times can be exceptionally difficult due to wavering severity of symptoms and the rollercoaster of emotions it evokes. However, I also believe that living with a chronic illness can also allows us to stop within our daily lives and appreciate the simplest of pleasures such as the relief of a warm bubblebath or our favourite song playing on the radio. Chronic illness can cause us to enjoy and appreciate the journey rather than focusing on the destination as many do due to the demands of modern living.
Finding simple pleasures to enjoy and allowing them to bring happiness is just important key to happiness, but as often the door to happiness is often locked to us when we are struggling and experiencing difficult times, there is always more than one key to unlock the door and find happiness on the other side.
Choose Hope and Happiness
One other important key is remaining positive and embracing hope. Surrounding myself with positivity and the favourite inspirational quotes that adorn my bedroom helps to keep the light on during my darkest days and gives me hope for a brighter tomorrow. They are not a miracle cure for the down days that I often experience as a result of living with a neurological condition but they are a reminder that these feelings and the severity of the symptoms at that particular moment, are just that a fleeting moment in a much longer series of moments.
But more importantly, happiness cannot be bought or be given by materialistic objects but by those people we are surrounded by, who give us comfort and support when we are in need of it most and also by the little moments of pleasure that makes life worth living (despite living with a chronic illness).
Welcome to the first day of April, which means just one thing – the beginning of the WEGO Health, Health Activist Writer’s Month Challenge 2015! Again I will be participating in this writing challenge for those living with and advocating for those with chronic health conditions based upon given prompts.
Wednesday April 1st: Wordless Wednesday
Since this is the start of HAWMC, post a picture that shows how excited you are for the next 30 days. We always love a good Health Activist selfie!
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:
