Living With The Darkness

All of us will have situations or places that we find difficult; situations that push us emotionally, revealing the depths of our strength and ability to cope with high-stress situations. Add living with a chronic illness into the mix, and the number of situations or places that we find demanding increase exponentially.  The reasons for […]

2016: A Year of Hope

Presents have all been ferociously unwrapped, the christmas decorations have been taken down, and 2015 has been erased to make room for a new start that 2016 promises us.

Just like in the sand, 2015 is being erased to make way for 2016
Just like in the sand, 2015 is being erased to make way for 2016

It’s been a time of reflection, in which we acknowledge the people, events, and the changes that helped to define what the year has meant to us, as well as a time to look forward to the future and all the hopes and possibilities that it may bring.

In my notable absence from blogging, I have been experiencing some of the lowest points in my journey of living with a neurological condition.  The pain and trembling in the legs has been so bad that it has almost overpowered everything else; overpowered in a way that concentrating on anything has been increasingly difficult.  There have been so many moments that I wished, like a faulty computer I could simply press CTRL+ALT+DEL to reboot my troublesome limbs.

From Pinterest
From Pinterest

Consequently most of the Christmas period was spent on the sofa, doing my shopping online and enjoying the overly cheesy and sentimental films that the festive season brings. Of course, all of these festive films are all essentially different versions of the same clichéd premise: chaos ensues into the lives of the films protagonist only for it to eventually remind them what is important in life as they emerge from it a better person.

It's A Wonderful Life is the ultimate Christmas film
It’s A Wonderful Life is the ultimate Christmas film

Furthermore, these Christmas films, also emphasises the importance of hope.  The hope for a happily ever after.  The hope of children that the myth of Father Christmas is real, as well as the hope of presents under the tree on Christmas morning!

The concept of hope and acceptance is important in the chronic illness community and one which I have mentioned in previous posts.  The hope that despite chronic illness and its limitations upon our lives we are still able to find purpose and carve out a successful and fulfilled life.  That is not to say that we all hope for a miraculous recovery or cure from our ails, as this very often the case would be extremely remote, but hope for a better tomorrow despite the circumstances of our lives.

This year I choose hope...
This year I choose hope…

It is strange that before the deterioration of my symptoms within the last few weeks of 2015, I had thought I had reached acceptance of my condition and wore hope like a badge.  However, like items such keys or our mobile phones, hope and acceptance can become mislaid and we are once again navigating the ‘stages of grief’.  It is a continuous cycle of ups and downs in which our journey to acceptance starts again and again.

We are now at that time of year when New Year Resolutions are made and trying to be kept!  Often these resolutions are not meaningful, unattainable and are completely out of reach of our expectations.  But what if we focused on how we would like to feel during the year instead of what we would like to achieve?  By focusing on our ‘core desired feelings’ we are much more likely to achieve our goals (if these goals are consistent with how we want to feel).

Many people are doing this by creating  a ‘one word‘ for the year.  A word to focus upon every day for the 366 days of 2016.  One word that perfectly epitomises who we want to be or how we want to live our lives.  The choice of the word is important as for the year, it will become a compass in life, as it directs your decision-making and guides you through each day.

My word for the year is…HOPE.


I had thought that HOPE is something that I live with everyday, as I live with the neurological condition.  However, after reflecting on this last relapse, and its effect on my emotional health, I realise that like many other people experiencing difficult times, hope is something that I feel is out of reach.

However, during 2016 I would once again like to pick up the torch of hope and run with it for the duration of the year and through the finishing line at the end of this year. Yes, hope is often difficult during the trying days with chronic illness.  But I also think, that hope is an important word for those navigating life with chronic illness, as if one has hope then it can lead to many other things, such as acceptance and peace for example.  William Wordsworth once said ‘not without hope we suffer and mourn’, and I for one agree as in the times I have been without hope during my own personal journey with illness, life was much more difficult; mourning for an old life that was no longer mine to live.

This year, I intend to focus on the positives despite living with a long-term condition.  To appreciate and embrace the small achievements made and accept that these small steps has an impact no matter how insignificant; and furthermore to see these small steps as building blocks to bigger achievements.

I am starting this new positive and more hopeful outlook by creating my own ‘happiness jar’ in which I am going to write all the good and positive things that is going to happen during the next year.   These notes will be then placed in the jar and on New Year’s Eve, only then I can open the jar and marvel at all the wonderful events that has shaped the year.

Image: Pinterest
Image: Pinterest

I would also like to see this year as a blank slate.  To not look at the past failures and bad times that 2015 saw, and get caught up with the things that I did not achieve, but rather see the new year as a fresh start, with endless possibilities and opportunities to explore.

And as I experience bad days due to unrelenting symptoms, I will focus on my one word and remember that it is just a bad day, but it does not have to mean that the entire year will consist of days like them.  I will focus on hope and move forward with life; neurological condition and all,

What is going to be your word for 2016?


Experiencing Instead of Wishing of Better Days…

Around two weeks, I made pre-arranged plans with my personal assistant to go to the cinema.

On the morning of the day of the arranged trip, I found that the symptoms that plague my everyday life were dialled up to the maximum volume on my personal symptom-o-metre.  On these days, I would usually cancel such plans and make the decision to go somewhere safe and familiar – surroundings where I feel comfortable no matter how bad I am feeling, and which are just as comforting as my own home.

Symptom-o-meter!! From mild angelic experience to severe, devil-like experience of them!
Symptom-o-meter!! From mild angelic experience to severe, devil-like experience of them!

On this day however, I made the decision to make the journey to the retail park, which our regular cinema is attached, and see how the day was going to pan out.  I made the decision, not to make plans, but instead, if I made it to the cinema, than great, however even if I wasn’t well enough to attend, I still had a lovely day away from home, browsing stores and boutiques and indulging myself with a special lunch.

The cinema, as expected did not happen thanks to the unrelenting symptoms that was severely afflicting me, particularly the trembling in my legs that did not allow me to walk around the entire retail complex.

At first, I was thoroughly disappointed at myself and the condition with which I live for wrecking my plans in the overly critical way that I often am in regards to myself.  Although, at the time I felt that I lost the battle to my neurological condition, I have come to realise however that this is not the case.  I may not have made it to the cinema, but I did still manage to push through the severe and unrelenting symptoms that I was experiencing and go to a place that can often make me feel uncomfortable due to the size of the place which can often worsen the dizziness that is part of my chronic illness package.

Perhaps by winning certain battles in our lives with chronic illness we can find ways around certain problems to win the battle another time
Perhaps by winning certain battles in our lives with chronic illness we can find ways around certain problems to win the battle another time

Chronic illness often wins many battles in our lives; however, it does not win all of the battles.  There are many battles that we win; many times we prize the triumph away from the hands of chronic illness and are victorious over defeat.

Think about the last very bad day you had due to chronic illness…

  • Did you still manage to get out of bed?
  •  Go for a shower?
  • Do small chores around the house?

If yes, then congratulations, you triumphed over your illness.  It’s a small victory, but a victory nonetheless.  We need to celebrate and appreciate these small accomplishments as just that – victories over our illnesses that already take so much from our lives, and accomplishing such feats can often feel that we are taking back some control that chronic illness can steal away.

That is the partly the reason for choosing to go out when it would have been easier to stay in the confines of the four walls where I feel safe when the symptoms are it’s worse.  I did not want my neurological condition to control my life and dictate how I spend my time.  I want to enjoy life, and not feel that I merely surviving through life as a result of living with a neurological condition. I want to enjoy life and be happy instead of being stuck inside the same four walls with only my symptoms for company and hoping for better days ahead.

Furthermore, the triumphant day out also taught me that I am a lot stronger than I think I am; and that the symptoms do not have to have as much control as I often choose to give them.  That I am able to take risks and go to places that I did not think I could, as Ophelia says Shakespeare’s, Hamlet:

we know what we are, but know not what we may be

We know what our lives are with chronic illness and as an extension who we are because of it.  Perhaps we need to step out of the box that chronic illness imprisons us into to find out what our lives can be like, if and when we choose to take back control that illness removes from our lives.  Who we can be when we refuse to let illness have the main spotlight in our lives.

If we did, who knows where we may end up?



The (Positive) Memory Book

During my absence of blogging, I have once again been indulging in my love of books and burying myself in the pages of the books that have been on my to-read list for some time.  Prior to this, reading had been somewhat problematic due to the severe dizziness and visual disturbances, that I have been experiencing, and for a while it seemed that my love of reading was another thing that my illness had taken away from me.

However, although the dizziness is still bad and still experiencing visual disturbances, they have eased enough for me to start reading again.  One book that I have recently read was the excellent and highly emotional read, ‘The Memory Book’ by Rowan Coleman.

The gorgeous cover of a wonderful and moving book
The gorgeous cover of a wonderful and moving book

The book tells the story of Claire, a beautiful, intelligent and vibrant forty-something.  Mother to two wonderful children, Caitlin aged 20 and Esther aged 3, and married to Greg, the man of her dreams.  Claire, however is also living early onset Alzheimer’s Disease, and after watching her own father overcome to the disease, Claire is all too aware that life for her and her family will never be the same.

Greg, her husband then buys her a beautiful notebook, which becomes ‘The Memory Book’ in which Claire, and other members of her immediate family to record their own personal memories of the life that they had together, as well as mementos that have had significant meaning in their lives.  The book is not only for Claire to use as a memory aid, but also for the entire family to cherish and remember the life that they all shared together.

The story made me think of my own life with chronic illness.  Living with a variety of symptoms  such as pain, fatigue, dizziness as well as the problems with my legs, all associated with the neurological condition I live with, I have no need for a book to help me remember my life with my condition.  However, often when we are struggling because of not only the physical effects of illness on our bodies but also the psychological effects on our minds, we are often however in need of positive reminders of life outside our bodies and outside the walls that chronic illness creates.

So, how about creating our own gorgeous notebooks, but instead of filling them with memories of our lives. we create pages of everything that help us to remain positive, mementos of happy times and everything else that makes us happy and fills our lives with joy!

Example of a beautiful memory book on Pinterest
Example of a beautiful memory book on Pinterest

Such items could include favourite uplifting and positive quotes and affirmations that bring comfort during difficult periods of your life.  Postcards, photographs and other mementos from holidays of a lifetime.  Letters and cards from friends and family including words of love and encouragement. Lyrics from your favourite song. Objects and pictures which evoke positivity and happiness or are reminders of achievements that have been gained despite illness; reminders that we are more than our illness.  Anything and everything that will help keep your spirits up during difficult periods in your life, such as during bad flares or relapses due to chronic illness.

Much research has shown the positive effects that writing and keeping a gratitude journal can have on our health, and in my opinion a memory book like the one I have described is a natural extension of that.  A  personal beautiful, hand-crafted positive memory book to look through when life with chronic illness feels like too much to handle, I think will help us bounce back from negative emotions and strengthen our happy memories.

The finished positivity book is not the only benefit, but the ability to become creative to produce something meaningful can also be therapeutic when living with the effects of chronic illness as it allows an outlet for all of our thoughts and feelings regarding life with chronic illness and the new limitations that it has placed in our lives.

I have been wanting to create my very own scrapbook for a while, to fill with all the beautiful quotes and affirmations that I have found during my days out with my carer, as well as the ones sent to me by other spoonies and after reading ‘The Memory Book’ it has inspired me to start my very own (positive) memory book!

Now I just need to buy all the materials I may need…


If you were to create your very own positive memory book, what items and mementos would you include?  Have any ideas I could use for my own book, then shoot me a message as unfortunately I am not very artistic or creative so would like to make it as easy as possible!  And for all you book-worms out there, then I would really recommend ‘The Memory Book’ by Rowan Coleman, it’s a wonderful read…

HAWMC Day 26: Navigating the Ups and Downs of Chronic Illness…


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 26th April: Make it a great day!

Life is full of ups and downs.  Sometimes, the type of day we have is out of our control, but other times, we can influence how our day is going.  Come up with 5 tips for changing your frame of mind when you’re having a bad day!

There is saying that says ‘Life is like a rollercoaster.’  And this saying, perfectly sums up what it is to live with a chronic illness.

Everyday there are many ups and downs as a result of our chronic illnesses.  There are plenty of ‘up’ moments, little moments that make the day worthwhile and gives us a reason to smile.  However, inevitably there are just as many ‘down’ moments, usually as a result of the onset of symptoms, and other effects that are a result of living with a chronic illness.


It is true that we as individuals have control over how we are feeling and therefore influence how our day is going.  However, as those of living with a chronic illness will relate, often our symptoms and our long-term health condition very often dictates the type of day we are going to have.

Take yesterday, for instance, as my Mum has the week off from work, we were planning a trip to a local out-of-town shopping centre, which I was really looking forward to, especially as trips out, particularly those with Mum and Dad are rare.

However, on the morning of the planned trip, I awoke feeling exceptionally weak.  During the night, I experienced excruciating pain in my legs, and in the morning, I found that they were weak and barely strong enough to hold me up, never mind being strong enough to allow me to walk around shops for most of the morning.

Furthermore, the constant dizziness that I experience as a result of the brain stem lesion was exceptionally intense.  As a result therefore, I felt that I was too unwell to go on the planned trip, and instead spent most of the day lying on the sofa beneath my comforting duvet whilst my parents went shopping.  It was disappointing and frustrating not being able to do something that I was so looking forward to, and just one example of not being in control of our how day is going.

So, on these bad days, and the days in which we have no control over our day as a result of illness, how can we help change our frame of mind to make a bad day seem less so?  Here are 5 tips that can help change our day:

  • Practice gratitude: In my experience, using a gratitude journal and practicing gratitude can greatly help change our mindset.  In these gratitude journals it is useful to write at least 3 good things that happened to you during the day no matter how small or insignificant they may seem.  In my experience, in my doing so it helps to change your negative mindset into a positive one, and furthermore it also helps to make you appreciate the little gifts that each day delivers.2010-05-19-gratitudepic
  • Rewarding yourself: After a long day battling with symptoms such as pain, nausea, dizziness is a feat in itself! By planning to reward yourself, for getting through a difficult and stressful day, or for finishing a task despite dealing with debilitating symptoms it can help to give yourself something else to think about besides the symptoms currently being experienced.  Rewarding ourselves gives us something to look forward to despite the stresses of living with chronic illness. The reward does not need to be big or expensive; sometimes it’s finding pleasures in the little things in life.  My favourite reward?  A delicious bar of chocolate to savour at the end of the night!article-2238016-147A49E1000005DC-220_634x358
  • Listen to a favourite song and sing along!: Research has shown that listening to music that you like can actually alter your mood and alleviate feelings of depression.  Therefore, make your own ‘Feel Better’ playlist in your Mp3 player that includes songs that work for you and which lifts your mood.  Choose positive and uplifting songs that you can sing along to, such as the brilliant ‘Happy’ by Pharrell Williams.  It could really help change the outlook for the day! 



  • Honour yourself and your body: On these days, where we feel that we have no control, is the most important time to practice some self-care.  It is important to practice these rituals when we need it the most.  Nuture yourself by taking a warm bath, schedule a massage, cozy up with a book, or relax with a cup of tea and enjoy some quiet time.


  • Smile!: Research has shown that in fact smiling really can turn a frown upside down.  When things seem bad smiling can actually make us feel more positive and happier about the situation, so let’s all try smiling!  And surround yourself with positive people and positive things – the positivity board that I have set up in my bedroom really does help when I am experiencing bad flares as a result of my condition.  It is a reminder that the negative situation is not permanent, it’s only temporary and as everything that is brief, it will soon pass. 

HAWMC Day 2: There is more than one key to unlock happiness….


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
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).

Spread a little magic…

Christmas is most truly Christmas when we celebrate it by giving the light of love to those who need it most
– Ruth Carter Stapleton

Well, the Christmas season is nearly upon us and now is the time to start buying gifts for all your loved ones.  Of course, gifts can be bought and given at Christmas or birthdays – gifts are really lovely gestures for when a loved one or good friend is struggling due to personal circumstances.  One example, of course being when suffering a chronic illness.  When living with a chronic illness, we often experience both good and bad times due to our chronic illnesses, and when experiencing lows, I know due to personal experience that receiving a card or small present can bring a little sunshine to dark days as well as the pleasure in knowing that someone has thought of us, despite the overwhelming feelings of loneliness and isolation that can accompany life with a long-term health condition (especially one which results in the majority of days being spent in the house).

As it is the time of giving and thinking of others, I thought I would share some gifts that I have come across that someone going through a difficult time might appreciate, or is ideal for someone living with a chronic illness like myself!  And perhaps think about those who are experiencing difficult times presently and maybe think about sending them a card and a little something to remind them that they are not alone and that you are thinking of them.  It doesn’t even have to break the bank either – you could even try making a card instead of buying one, and if creative even make a present!

A friend of mine was going through a difficult time recently, and as funds were tight, I made her a little gift instead.  I took an old jar and cleaned it up, and thanks to my computer I printed lots of different positive and inspirational quotes I loved then cut them out and rolled each separate quote up, tied a ribbon around them and placed them in the jar.  I even attached a homemade label and called it a ‘Positivity Jar’ and wrote to take one out of the jar whenever feeling sad and low.  It was such a simple idea but my friend really loved and appreciated the thought, and even has it sitting on her dressing table and uses it whenever her bad days present themselves.  Other homemade presents might also include making a special playlist downloaded to a CD full of uplifting and positive songs to cheer them up during the bad days.  And if you are stuck for ideas there always lots of inspiration on Pinterest.

But here are some other lovely gift ideas for fellow spoonies…

Positive and Uplifting Gift Ideas 

It is common amongst the spoonie community to share through social media, positive and inspiring quotes – little mantras that help us stay positive and happy despite all of the limitations and constraints that our conditions places upon our lives.  It is these little mantras that help us and others who are going through a difficult time so what better present than one which provides positivity and inspiration to serve as encouragement to continue and persevere when the going gets tough.

My favourite online store for such inspiring and positive gifts has to be the Itty Bitty Book Company.  They are a small ethical and super friendly business based in Belfast, Ireland and offer a wide range of inspirational and positive gifts from cute badges to their gorgeous ‘Itty Bitty’ Books. In the books range are 3 different books offering inspiring quotes for Motivation, Positivity or Strength and in my opinion it is these Itty Bitty Book of Positivity and the Itty Bitty Book of Strength are ideal gifts for someone struggling with chronic illness or generally are experiencing a difficult time in their life.  I have all 3 of their gorgeous and handmade books and as they are small they are ideal to carry in your bag, and to read the lovely quotes and mantras when life gets tough wherever you are.

One of their beautiful prints would also be an ideal gift for any spoonie, and there are a number of different quotes on offer and if one of them has a favourite quote of theirs, even better.  They can easily be framed and placed in clear view of a bed or sofa; wherever they spend the majority of their time because of chronic illness, for example.  Or perhaps one of their cute little badges that can brighten dark winter coats or woolly hats, and are ideal gifts for a low-budget.  And they even offer inspiring greeting cards too which are blank so ideal when wanting to write a personal message inside.

To see the full range of products on offer, or to buy something for a friend (or yourself) you can check out their Etsy store here

Useful Gifts

From personal experience, I know that receiving gifts that have a useful purpose (such as a hot water bottle for example because of problems with feeling cold) can mean so much as it shows that someone as it not only shows that someone has thought of you, but also that they really care and therefore want to give you something that will make you feel better.  This can include a little comfort box filled with goodies such as a favourite type of tea, thick socks, body products and some sweets or chocolate.  For ready-made boxes that you can send with a variety of products that you can personalise for the person you are buying for, then I can recommend the ethical company Healing Boxes that make and send Healing Boxes especially for those experiencing chronic illness, or just experiencing difficulties in their life.  Lovely gifts on offer and a great way to show someone that you care.


I can also recommend The Pillow Fort shop for fun and useful gifts for someone living with a chronic illness.  Examples of products on offer include cosy socks (for those with poor circulation and as a result suffer from cold feet perhaps), pill boxes (useful item that is a must for any spoonie as it helps to remember if you have taken medication or not!), cosy and cuddly soft toys that can be heated in the microwave (fun alternative to a hot water bottle as it is more comforting and just fun!).  And there are plenty more ideas and inspiration for useful gifts for the spoonie in your life!

Special Gifts 

Sometimes if we are able to  or the person is very close to us we like to give them a very special gift, which is especially true at Christmas for example.  One special gift for example is jewellery and I have come across some lovely pieces online.  Examples include some jewellery even inspired by the positive and uplifting quotes that we love,  I even own a pair of earrings, which are in the shape of rain drops and  a matching necklace in the design of a cloud with a rain drop attached and with these pieces of jewellery came a card with my favourite quote “Life isn’t about waiting for the storm to pass but learning to dance in the rain.”  I even have this card in my purse to remind myself that if I am experiencing debilitating symptoms when I am out that things will get better.  There are plenty of other pieces inspired by uplifting quotes on offer here.

Whenever we put a piece of jewellery on or look down and see it on display it can be a lovely reminder to remain hopeful during difficult times.  The online store Not on the High Street has a beautiful swallow necklace (bracelet and earrings are also available) for example which symbolises freedom and hope for example.  Another online retailer Lily Charmed even offers various items of jewellery than can even be personalised with a message of your choice on the card inside of the box.   I particularly love their spoon necklace which every spoonie will be able to relate to and love.  The snowflake may also be a nice charm to give as a reminder that the receiver is beautiful, special and unique as chronic illness can be difficult to live with, as well as often making you feel extremely different from your peers.

Other Gifts 

Other ideas for gifts which could be useful for someone living with a chronic illness might include:

  • Stationary – great idea for those who love writing and even if they don’t it might encourage them to start doing so as it can be very cathartic
  • Pyjamas – a must-have for any spoonie as we often crave comfort when we are feeling bad and pyjamas are the best type of clothing to offer this (that and perhaps onesies!)
  • Adult Colouring-in books – apparently these are very therapeutic for those experiencing depression and can perhaps offer similar benefits for those with chronic pain, as it could be a form of distraction
  • Gift card for iTunes or Google Play – these are especially great for those who love TV programmes or films as they can buy something to film to purchase to keep them company when stuck at home for example
  • Book – ideal for book lovers like myself!  Perhaps give them a book that they wouldn’t normally read
  • LED string lights – I love these as it gives any room a magical look and will help cheer a person who may be stuck in bed due to illness

So those are some of my top tips for lovely gifts for someone experiencing difficulties as a result of a chronic illness for example.

So perhaps think of those experiencing a difficult time this Christmas that will put a smile on their face and yours and let us all sprinkle a little magic this Christmas (and throughout the year!).

I have recently started a board on my Pinterest page called ‘Spoonie Gift Ideas‘  which has more ideas on special and thoughtful gifts for anyone going through difficult times because of a chronic illness.  Of course, if you have any other suggestions on what to pin then please feel free to get in touch on the blog or my pages on social media.

Let me know of any good deeds that you have done recently or throughout this holiday season and if you have bought something special for any other spoonies this Christmas.

Reasons For loving Winter

When you think of Winter which words and image are conjured up in your mind?  For many, if asked they would answer with images such as the nights drawing in during the early evening, heavy rain lashing against the windows and the sound of the howling wind outside, and those 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.  Whereas Winter is seen as a time to dread, Summer is a time where everything feels alive and happy; a time of endless possibilities.  Winter is indeed the cruelest 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.  For those suffering from chronic pain like me, Winter can also be a difficult time as the freezing temperatures can exponentially increase the amount of pain experienced.  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 stiffness and weakness that I experience, thereby increasing my pain levels.  During previous years these 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
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 personal chronic pain.  Hot water bottles, warm blankets, and snuggly pyjamas are also fantastic at helping us keep warm when in the safety of our own homes.  Although these steps can help us with the physical pain associated with our long-term conditions, they, however, do not lessen the emotional impact that the winter has on our psychological well-being.

Many people experience some form of SAD (Seasonal Affective Disorder) a kind of depression associated with the reduced exposure to sunlight.  Light therapy which involves sitting in front or beneath a lightbox, as well as more conventional treatments for depression including cognitive behavioural therapy and sometimes antidepressants.

Winter can be a miserable time for many...and not a good time for those with chronic illness
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 in terms of helping cope with living with a long-term health condition.  One example of an exercise that is recommended 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 grateful and happy on that particular day.   Research suggests that by doing this, it can change the brain’s thought processes and can even result in more favourable thinking patterns.  Therefore, to be more positive and happier during the winter months, despite the miserable weather perhaps we need to remind ourselves of the positive aspects of winter, and also to think of the reasons we should love winter.

So what are some of the reasons we should love winter?

The cold and wet weather during the winter months provide the ideal opportunity to stay indoors – this is the same for most people regardless of whether they live with a chronic illness or not.  I know for me personally when I tell others that I want nothing more than to stay indoors and lay down is met with surprise and disbelief during the summer.   Instead of respecting my wishes, I am barraged with well-meaning encouragement to venture outside for fresh air, which is made to sound like a miracle cure for all my ills.  In the winter, on the other hand, friends and family are not surprised or even comment on my love of staying indoors beneath a warm blanket and enjoying a box-set binge, as let’s face it everybody wants nothing more than do the same when the bad weather hits.  As well as being not judged for spending so much time indoors, I also feel that during the winter I am more likely not 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 in the warm and dry watching the new series of television programmes that tend to start when the weather begins to deteriorate.  Recently some of my favourite television programmes have returned to the new 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)
Nothing more enjoyable than wrapping up warm during the cold winter weather or sit in front of a fireplace (if able) – Pinterest

Winter provides us with the perfect excuse to stay indoors and curl up with a thick blanket and a mug of delicious hot chocolate with marshmallows.  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 fast pace and cramming as much fun in as possible, winter is far more relaxed and allows us to savour each moment.

A mug of hot chocolate is so comforting during winter - always make time when out shopping!
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 wonderful aspect of enjoying during 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 as they are so comfortable and also keep my feet incredibly warm and are one piece that is among my favourite items in my wardrobe and boots that I am often complimented on when out which makes me feel good about myself.

My ever so warm and snuggly ugg boots!!
My ever so warm and snuggly ugg boots!!

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 are just begging to be served warm with cream or custard.  Winter vegetables can be roasted or used as ingredients for bowls of steaming and comforting 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 alternatively sprinkles of cocoa powder.  And if the weather is keeping you indoors, there is plenty of time to put everything you have learnt from The Great British Bake Off  (or other such cookery programmes!) into practice by baking cakes.  Assembling a gingerbread house or experimenting with the abundance of seasonal recipes that you have always wanted to try out but never found the time.

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, as well as the opportunity to come together with family and friends whom we may not have seen for some time.  It is hard to dislike Bonfire Night for example, as throughout the country beautiful, colourful and vibrant lights are seen decorating the dark night skies.  Even if we are out of spoons or too unwell to attend a local fireworks display, it does not mean that we have to miss out on everything, as we can still enjoy 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?
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 are illuminated with colourful lights and vibrant decorations which looks beautiful and cheery against the dark and dreary winter nights.  Furthermore, with Christmas also brings a collection of wonderful 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 with Christmas also brings a lot of activities that can deplete the number of limited spoons but in my opinion, it is worth it for the happiness and the formation of happy memories that Christmas brings.

What are your personal reasons for loving winter?  You can contact me via Twitter using @serenebutterfly or sending me an email at  Or comment below…

Enjoy the small, simple silver linings

I was inspired to write this new blog post after reading a particular article from ‘The Huffington Post

The article was regarding recent research by the biscuit brand go ahead! to find out what really makes people in Britain happy.

Surprisingly, what topped the list was not extravagant things  The list was compiled however by simple pleasures walking in the sunshine which topped the list as well as other feel-good pleasures such as getting into fresh bed sheets, having a cuddle from someone and listening to your favourite song as examples.

Reading the article, made me think of life with chronic illness.  Often when living with a chronic illness, such as lupus, multiple sclerosis and fibromyalgia for example, we are constantly looking for the next big successful outcome or achievement to make us feel-good or give us a sense of peace.  I know when symptoms are very bad, I know that I feel miserable, and only imagine myself only being happy again if I were to be miraculously cured or the severity of the symptoms subsided.  Day-to-day we are often too focused on our symptoms and the negative effect that they are having on us  not only physically but also psychologically and emotionally.

We therefore forget to focus on the small pleasures that make us happy and take us out of ourselves; the forget the negative situation that we find ourselves in and to find happiness in what is around us.

So, I have decided that I would write my own personal list of my own feel-good pleasures that makes me happy:

  1. Reading my favourite book
  2. Receiving a handwritten letter
  3. Looking at colourful butterflies


  4. Receiving flowers
  5. Getting into fresh bed sheets
  6. Watching my favourite film
  7. Receiving a lovely comment on a blog post I have written
  8. Finding a lovely present for someone
  9. Receiving a hug from someone
  10. Seeing a rainbow
  11. Being wrapped in a warm blanket especially on cold dark evenings
  12. Receiving an unexpected phone call from a friend
  13. Being pampered, e.g. a massage or a trip to the hairdresser’s
  14. Applying colourful nail polish on my nails

  15. The smell of popcorn
  16. The taste of chocolate
  17. Being kissed by my dog Honey
  18. Spending Sundays with Mum
  19. The feel of soft and clean towels
  20. Going out and enjoying the sunshine
  21. My gorgeous cushions which brighten my bed and helps keep me comfortable when I rest in bed
  22. Waking up after a restless sleep
  23. Browsing in a book shop
  24. Making decopauge cards
  25. Completing a level of a game that I had been stuck on for ages
  26. Publishing a blog post that I had been working hard on
  27. People smiling and saying hello to me on the street
  28. Enjoying my favourite drink and relaxing in my favourite coffee shop
  29. Laughing
  30. The sound of the rain

Those are some of the things that would be on my persona top favourite feel-good moment list.  What would be on yours?  Comment below and let me know!!

To see the full list of what British people voted as their top favourite feel-good pleasures, visit the Huffington Post article here.





Sometimes we need to throw out the rule book…

These past couple of days, I have been experiencing the severe trembling sensations in my legs.  Well, I have these sensations all of the time, of course, however the trembling has been somewhat more severe recently.  It is not just these sensations which I have found to be particularly troublesome of late; the fatigue, and the pain associated with the spastic paraparesis have also been bothersome.  At times, living with all these symptoms as well as the constant dizziness has been increasingly difficult and miserable.  Everyone reading this who also experiences chronic illness, will know that when experiencing a relapse, or a bad flare regarding our symptoms, you need to balance the amount of physical activity whether it be exercising, going out or doing chores around the house, with resting your body and taking a break from activity that may exacerbate symptoms.

And I have been doing this; I have listened to my body and took a break from attending the gym, as the trembling in the legs on the day I usually visit was particularly bad.  I even had to cut short my day out with my carer as I felt too unwell and tired to go anywhere else, on that particular day.  However, I have also found that whilst I was balancing the amount of physical activity I was doing and resting; the symptoms were still not improving.  So, when Thursday arrived, and as I hadn’t been out for a few days, and felt miserable as a result, I decided to thrown the rule book out of the window and enjoy the day without worrying about symptoms or maintaining that balance of physical activity with resting.  Of course, on the day I needed to take my wheelchair because of the severity of the trembling in the legs, but was determined that despite all this I was going to enjoy the glorious weather and spend the day away from my bed and the same four walls that I had been cooped up in for several days.

I am so glad that I went out despite not feeling my best and whilst battling severe symptoms.

I had a really enjoyable day out; the weather was gloriously warm and it felt so lovely to be out of the house and feeling the warm sunshine on my skin.  The symptoms, and especially the trembling in my legs were still so bothersome that I was unable to go to the gym, so we decided that instead we would spend the day visiting a little town near to where I live called Cowbridge. I had previously only been there once, and not for very long so thought it would make a change to visit somewhere relatively new and going into little shops and boutiques that I had never experienced before.  I even managed to treat myself to a gorgeous ring that I had seen online by one of my favourite jewellery designers Annie Haak, but had been unsure of purchasing as I was worried that it would not fit my very small fingers!  However, whilst browsing the shop windows in Cowbridge, we came across a little jewellery store that stocked these very same rings!  And after trying on the ring and found that it did fit my fingers, I bought it.  I am so pleased with my purchase and is a lovely reminder of our day out and triumphing over my symptoms.

The gorgeous Annie Haak adjustable ring that I bought for myself
The gorgeous Annie Haak adjustable ring that I bought for myself

“When we are experiencing more bad days then good, we need to make the most of those good days” (Click to Tweet)

The day was not just spent shopping; part of the day was spent relaxing in this pretty and scenic gardens that my carer came across on a previous visit to Cowbridge.  It was so nice just to sit and relax amongst the beautiful and colourful flowers.  It also created the perfect time to take some photographs to commemorate this splendid day out that I enjoyed so much.  In my experience of living with chronic illness, is that when we are experiencing more bad days than good, we therefore need to really make the most of those good days.  Living with a chronic illness, it is so wonderful to make lovely memories that we can look back on during the bad days and reflect upon.

The past couple of days after this day out has been very bad; the trembling in the legs were once again very severe, more so than before, and left unable to fully function.  Do I regret the day out now?  No, absolutely not.  As I said before, living a life with illness, where you experience more bad days than good, we therefore have to take full advantage of the days which are good.  Although it was not a particularly good day health-wise on this day, I felt that I could physically do more than previous days and so took full advantage.  I may be suffering after, however but I still have those lovely, positive memories to look back on and a gorgeous ring to admire.

So, although rest is vital and important when living a life with chronic illness, sometimes however it is just as important to sometimes throw the rule book out of the window and go and make memories to cherish and look back on when illness prevents us from doing anything else.  Let’s go out and live our lives, and take full advantage of the rare good days and make glorious memories in the process…