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531000_10150773237874254_36556179253_11327993_607059728_n 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.

Sunday April 5th: Breaking News  The top story of today is…YOU.  Share with your readers your proudest accomplishments in the last 5 years.  Don’t be shy, tell us everything!

It often feels that chronic illness robs us of our lives.  As a result of the debilitating symptoms we constantly live with, the majority of our time is very often spent inside the safety and comfort of our homes.  Sometimes much of our time is even spent stuck in bed. It very often feels that chronic illness is controlling us rather than the other way around.  And because of these feelings of inadequacy and grieving over the life we have lost takes place in our conscious thoughts.  I know from personal experience, that very often we feel that because of our time spent living with illness, we have not accomplished anything special, especially when witnessing the many accomplishments and big life events of our friends and family on social media. We forget to celebrate the small victories and accomplishments that we achieve without us ever realising it; sure, they may be inconsequential to an outsider, but fellow spoonies and our close friends and family will know how big these triumphs are, especially as it shows our strength at not letting our chronic illness win and dictate our lives. So, as the prompt asks, I am going to share with you all some of the small victories and accomplishments that I have achieved during the last five years:

  1. Going on a cruise – This is probably the biggest accomplishment that I have achieved.  A lot of people are afraid of the unknown, but as fellow spoonies will relate, this fear can become worse when living with a chronic illness.  So, going on a holiday, and especially a holiday that we  have never been on before can provoke worry. What will it be like?  How am I going to feel during the cruise?  What if I become ill? A lot of questions are raised when going on holiday and a lot needs to be thought of when living with a long-term health condition.  But despite the worry and the severity of my condition at the time, I still went on the fortnight cruise and had a wonderful time

    The magnificent 'Adventure of the Seas'
    The magnificent ‘Adventure of the Seas’
  2. Going to Bath – I am a fan of Jane Austen, so it has been of one my dreams for sometime to go and visit the Bath, a city in which she lived for several years and influenced several of her novels.  And last week, I made it there.  At the time I was disappointed as the trip to the museum was the only visit I accomplished during the time, Mum and I spent there.  The rest of the trip was spent lying on the bed in the hotel as I was too unwell to do anything else.  But looking at it positively however, the trip was still an accomplishment as not only had I visited a new city that I had never been before, but I also visited someplace I wanted to go for sometime.
  3. Going to the Cinema – Due to the dizziness, going to places such as the cinema is very difficult for me, as it’s not only due to the extensive sensory overload which can make the dizziness worse and cause vertigo but due to the neurological condition, I am unable to cope with buildings which have high ceilings.  However, despite this when the film, Les Miserables came out I really wanted to go and see it as it’s one of my favourite musicals.  My carer took me to a smaller cinema, but it was still quite the ordeal and really had to battle against the dizziness and nausea.  Somewhere, despite all of this however, I managed to stay and watch the entire film and so therefore this was quite the accomplishment.BCCY6Z7CcAA0Q7e
  4. Started shopping at Next – Due to the problems with large buildings being able to go and shop in stores located in local retail parks is also extremely difficult, and as a result mostly use online shopping to buy clothes from my favourite store, Next.  However, before my cruise last year, I wanted new clothes to take with me.  So, once again I pushed myself to go in there, it was not easy and often had to leave the store and go back and sit in the car because of the severe trembling in my legs but the determination I had gave me the strength to try and try again.  Now, I regularly visit the store, even if it’s just to look around, and can even push myself to spend more time in there then I previously could.

    It's more satisfying shopping in-store than relying on the internet
    It’s more satisfying shopping in-store than relying on the internet
  5. Visiting new places – A lot of spoonies, I am sure can relate to the difficulty and worry of going somewhere we have never been before.  We spoonies often love the familiar.  Going to towns or cities which we know well is far easier when living with a chronic illness as we know where certain facilities are such as the toilet for example.  For me, suffering with severely weak legs and dizziness I often need to sit down somewhere quiet, and therefore when shopping in familiar surroundings I know where there are suitable places to take a rest.  When going to new places, however, we do not know any of these types of information, so visiting someplace new can cause worry and anxiety but during the past year or so I have managed to push myself to visit new places, which I have throughly enjoyed and although there have been problems such as legs giving way when I have not found any places to recuperate when symptoms flare, I am glad I have given myself the opportunity to experience new places and now have new places I love shopping!

What have been your recent victories and accomplishments?  Celebrate them all – even if they seem small and inconsequential!  Being a spoonie, even getting out of bed and having a shower is an achievement, especially on a bad day!

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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.

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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’.

 

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.

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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.

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“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
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
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).

Hello to readers new and old.

I hope everyone is doing well and have enjoyed the latest posts that I have written on the blog.

As loyal readers of the blog will know, I have developed my writing further by contributing to a new digital magazine for those young people living with chronic illness.  The Pillow Fort Magazine ethos is to provide a positive space for those living with chronic illness, and the magazine is a small part of their mission.

The latest issue is the 4th edition to be published and the theme was Thriving.  As a result therefore there are many submissions from those who also live with chronic illness who have not wallowed in misery due to their circumstances but how they have used their personal experiences of illness to grow and thrive.  Each page will inspire and lift your spirits.  It’s a fantastic read, I promise.

I wrote a piece on the chronic illness community and how that our experiences with illness allows us to grow and thrive as individuals and as a community.  I compare the chronic illness to flowers that grown and bloom after being inspired by a quote from Mulan – “The flower that blooms in adversity is the rarest and most beautiful of all”.

 

 

To find out more and to purchase your own copy of the magazine just click on the picture below. Copy-of-The-Pillow-Fort-3-1-600x600

 

If however you are unsure that you will  enjoy the magazine and so don’t want to spend the £3 for the magazine, The Pillow Fort Magazine is also offering a sample issue FREE which includes highlights from the first four issues of the magazine!  Just head on over to the The Pillow Fort website and scroll down to the Pillow Fort Magazine Sampler enter your name and email address and voila it will be sent to your inbox for you to enjoy and savour.

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In other news I am very excited to announce that I have been nominated for two awards for the upcoming WEGO Health Activist Awards.  Two members of the wonderful chronic illness community has nominated me for:

  • Best in Show: Blog
  • Best in Show: Twitter

I am s overwhelmed and humbled that there are people that have taken the time and thought of me as worthy of such a lovely accolade so I would like to thank those who nominated from the bottom of my heart.  This year, WEGO Health has set up a Nominee Directory where you can find out the other nominees, find out more information about them as well as the awards they have been nominated for.  Also, you can even endorse nominations by pressing a button and entering your name and email address.

Therefore, I am asking everyone who regularly reads my blog and enjoy my posts to take the time to endorse my nominations if you so wish.  You can view my page in the directory by clicking here.

And you can also take the time to thank the health activists and bloggers that have made a difference in your life or community by nominating them for one of the fourteen awards this year by going to the nomination page.

 

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