The Invisible Fight of Illness…

Imagine walking down a busy street.  Look at the faces of the people passing by.  Every one of those people will currently, or at some point in their past, face a battle.  Some of these battles may be visible, detectable to others, eliciting empathy and compassion.  Other battles, however are invisible; concealed from everyone else, like a deep hidden secret.  A battle that is only known by the person carrying the burden of the fight.

Be kind, for everyone you meet is fighting a hard battle...
Be kind, for everyone you meet is fighting a hard battle…

I am one of these people whom are battling an unseen, invisible fight.  If you were to sit next to me on a bus, or train for example, you would never know that I was living with a neurological condition (although you might if I were staggering with my crutch, or on the days where my weak legs confine me to the use of my wheelchair but even then I am met with confused stares silently asking why I am in need of such aids).

The personal fight I face as a result of my neurological condition although may not be visible to others, for me however is very real.  For me it is not invisible; it is my life.  Every step is a struggle, with legs trembling so much that it feels as if they will be buckle, although no one can see.  For others, the world is still, unmoving.  For me, however, the world seems off-balance, as if everything is slightly tilted, and at other times it seems as if there is constant motion.  Everyday I fight against fatigue to do everything that everyone often takes for granted such as being able to go shopping, take a shower or cook a meal for the family.

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“Living with an illness is often a balancing act between surrendering to our symptoms and fighting against them.”

Everyday is a battleground between myself and my body, however, like with any battles in history, there are times I am forced to surrender – such as those days when my legs are so weak, or the dizziness is so severe that I am unable to get out of bed, let alone stand or walk. ¬†Those days I am forced to surrender to my condition and stay confined to my bed. ¬†That’s the thing about living with a chronic illness, it is often a balancing act between surrendering to our symptoms and fighting against them.

It is not just the symptoms that we have to fight.  We also have to fight against the judgements of other people regarding our long-term health conditions.  At the start of our chronic illness journey, we are often met with understanding and compassion, friends and family make allowances for our limitations.  As time passes however, the understanding and compassion dissipates and is replaced with frustration.  Frustration at us still not being well enough to go out and take part in activities we used to before illness took over our lives.  Frustration at the chores still left untouched as illness still will not allow us to attend to them.  My parents, although often extremely supportive and understanding of my condition will sometimes feel embittered at finding certain chores left untouched after coming home from work, not realising that the day has been waived for a day on the sofa as a result of debilitating and unrelenting symptoms.  And they are unaware of this as to look at me, you only see a healthy woman.

It may seem that the neurological condition takes a large amount of space in my life, it however does not own nor control me.  Yes, it may borrow my life at times, restraining me to the four walls of this house I live in, but the condition does nor ever will take my entire life.  There are certain things that I am unable to do because of this condition; certain baggage that it has created, but there are still plenty of other things that I can and have done that I can still do.

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A profound quote from Tangled!

This invisible condition may fight for control for every facet in my personal life.  Now however I have chosen to fight back, and although I have not won control for every area of my life I have chosen to control aspects of my life that I do have control over.  I have chosen to live side by side with my condition instead of merely enduring life with it.

I choose to live rather than simply survive.

Song that is on my self-care playlist
Song that is on my self-care playlist

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…

The Longest Ride…of life with Chronic Illness

Living with chronic dizziness is hell.  The unpleasant sensation of having your whole world constantly moving even when still takes everything away from you.  Your friends, social life, independence, career plans to name but a few are lost when chronic illness strikes.  Long-term illness pecks away at your identity; taking pieces of things that make you you: the friends you meet, the places you like to socialise and your hobbies and interests.

For me, living with this neurological condition has taken a lot, and one example of something that it has taken for me is being able to go to the cinema and watch a film.  High ceilings, flashing strobe lights, fluorescent lights are just a few delights that can worsen the severity of the dizziness that I endure constantly.  Furthermore, they can also be triggers for other symptoms associated with the brain stem lesion such as vertigo and visual disturbances.  As someone who loves films this is an incredible loss; I mean sure, I can still watch them at home but there is nothing  like going to the cinema and watching films on the big screen, is there?

A couple of weeks ago, however saw the release of the new Nicholas Sparks film ‘The Longest Ride‘ and as a fan of his books and the adaptations that have been inspired by his works, I just had to try and push myself to go and see the movie.

My ticket for a showing of 'The Longest Ride'
My ticket for a showing of ‘The Longest Ride’

As a result, my carer and I attempted for the first time in several years to visit the cinema.  And I am happy to say that I managed it; successfully staying in the theatre to watch the entire film.  I would love to say it was easy, but like everything with living with a chronic condition  it was not.  The dizziness at times was so severe and my vision kept becoming blurry.  All my instincts was telling me to leave and go somewhere my symptoms although would still exist, would be less severe.  But the love of the film, and the beautiful story that unfolded during the two hours (and was also helped by the gorgeous Scott Eastwood).  The film was a beautiful love story about love itself but also the sacrifices that are made for it.

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This achievement may seem like a very small feat given the fact that going to the cinema is an activity that many people partake in everyday.  Healthy people often take being able to go to places such as the cinema for granted as for me living with a neurological condition, it was a big a challenge as someone attempting to scale an enormous mountain.  So, for me personally this was not a small feat, it was a huge win for me in the conflict that chronic illness has created inside my body.  During the course of watching the film it was not only dizziness, vertigo and the visual disturbances I had to contend with but also severe neuropathic pain in my legs (not helped by the lack of leg room) and the trembling in the legs made it difficult even being able to physically walk to the cinema itself.

I was thinking of the film long after it ended, and kept thinking of its title ‘The Longest Ride’. ¬†For me the title was defined by the enduring love between the two characters, Ruth and Ira. ¬†But it also got me thinking of its meaning in my life. ¬†Living with chronic illness in itself is a long ride. ¬†The term itself is clear¬†of this as the definition of the word can be used to refer to an illness which persists for a long-time or is constantly recurring.

From the onset of symptoms, living with a chronic illness is a long ride, consisting of endless doctor’s and hospital appointments, persistent and recurring symptoms (and often the onset of new ones) as well as the ceaseless days of feeling frail and sick. ¬† Imagine an extremely long and persistent road, well, living with a long-term condition is often like making the long ride down this road, and which often feels like there is no end. ¬†The journey towards diagnosis is even a long ride itself, with repetitive appointments with consultants leading to disappoint as medical tests fail to answer the one question we want answered – what is wrong with me?

Living with chronic illness can often feel like travelling on a long road with no end in sight...
Living with chronic illness can often feel like travelling on a long road with no end in sight…

And even after the diagnosis has been confirmed, chronic illness allows the long ride towards not only acceptance of the diagnosis but also to learn how to live with and manage the symptoms of said chronic illness.

Thinking back to the film, and the gargantuan achievement of going to the cinema despite experiencing such unpleasant symptoms that for one makes it extremely difficult to sit and watch a film but also has previously stopped me from enjoying such perks as trips to the cinema, has made me realise that we should not allow our conditions to take full control over our lives.  Yes, chronic illness is bound to take pieces of our old lives and identity and change them, however we should not allow our illness to stop us from doing things that we love.  Yes, the cinema trip was demanding on me physically, affecting me even days afterwards, experiencing a flare in severe symptoms, but it was still worth the trip.  Not only did I manage to watch a film that I desperately wanted to see, but I also defeated my condition reminding me that I am stronger my condition.

Now, I just need a little reminder of the film and the cinema trip to pin to my positivity board to serve as a reminder of the defeat over the dizziness and my neurological condition/ ¬†I was thinking of a postcard of the film poster or something so if anyone has any ideas or anything please get in touch! ¬†And if any of you, love romantic films then I would thoroughly recommend ‘The Longest Ride’.

Riding the waves of chronic illness…

Well this is my first post for well over a month.  I apologise for my long absence and lack of writing, but unfortunately once again I have been battling rough seas as a result of the symptoms associated with my neurological condition.

Take my legs for example, the trembling in my legs at times have felt so violent that everyday activities such as standing and walking has been particularly difficult.  Crippling fatigue has left me unable to function, and constantly finding myself falling asleep throughout the days but still finding myself with no energy no matter how much sleep that I had gotten!

Whilst experiencing these bad days however made me realise the importance of pacing. ¬†Those of us living with chronic illness often report experiencing an increase in the severity of symptoms such as pain, fatigue, dizziness and cognitive difficulties after physical activity, and in particular when these activities have resulted in over exertion. ¬†Doctors have named this phenomenon ‘post-exertional malaise’ and although is often reported in relation to myalgic encephalomyelitis (ME, or CFS) many spoonies living with a variety of different chronic conditions also report experiencing post-exertional malaise.

Preventing post-exertional malaise therefore largely depends on limiting activity to a level that will not exacerbate symptoms.  Pacing oneself is not always easy our limits do not have clear, unchanging boundaries, in other words we may find we are able to tolerate certain activities on some days but not on others.  Despite this however pacing is often regarded as the most appropriate self-management strategy that help us remain as active as possible whilst avoiding overexertion.  On bad days, therefore we need to limit our energy expenditure to the energy we have available.

Sounds easy right?  But in reality it is far from easy, as is often difficult to know the amount of energy we actually have to spare, and especially difficult when living with a condition in which the severity of symptoms fluctuate, like mine.  Despite this however, the importance of pacing and not overexerting oneself to avoid a relapse of symptoms is a lesson that I have been learning the hard way.

Although pacing is important when living with chronic illness, sometimes it is just nice to get out and do something that would be completely normal if it weren't for our chronic conditions
Although pacing is important when living with chronic illness, sometimes it is just nice to get out and do something that would be completely normal if it weren’t for our chronic conditions

Take for instance, a trip to a retail park that I took with my carer.  A retail park with a plethora of shops to peruse at length.  This particular retail park is quite large and due to the severity of the dizziness of late, it was a difficult trip to undertake but I was determined to push through the uncomfortable feelings and enjoy a day away from the prison that my house had become due to my condition.  Regular readers of my blog will know that when the dizziness is particularly bad as it has been of late, being in my wheelchair is extremely difficult for me and can often make it worse.  As a result, I abandoned the wheelchair and used my two very wobbly legs to make my way around the shops.  The trip was actually a huge success, as after a difficult start due to unrelenting symptoms but despite this and due to my  sheer stubbornness and determination I managed to walk around the entire complex.

Retail Park just like the one I managed to visit - take that brain stem lesion!
Retail Park just like the one I managed to visit – take that brain stem lesion!

For me it was a huge achievement, and although I was proud and enjoyed the day immensely, the days that followed were extremely difficult due to the severe symptoms that arrived days after the shopping trip. ¬†Intense pain, severe trembling in the legs, dizziness and unrelenting fatigue arrived in full force just hours after arriving back at home. ¬†And why? ¬†I had exceeded my energy limit and overexerted my body’s limit. ¬†I had failed to listen to my body and did not use the wheelchair when I probably should have. ¬†And this is not the only example of times when I have failed to listen to my body which resulted in the increase of my symptoms.

Living with chronic illness is often like surfing.  When living with chronic illness, we often find that  severe and unrelenting symptoms including pain, dizziness and fatigue can knock us from being able to successfully live life, much in the same way large and violent waves swipe surfers from their surfboards into the deep waters below.  To live a successful life despite chronic illness therefore we must learn to ride the waves of life, learning to use self-management strategies to balance our lives against our conditions, and not let ourselves be overwhelmed by the waves that are our symptoms.

A new bracelet to remind myself to ride the waves of chronic illness and to not let it stop me from living my life
A new bracelet to remind myself to ride the waves of chronic illness and to not let it stop me from living my life

So let us all learn to ride the waves of chronic illness and live our lives despite the barriers that it can create.  To not be overwhelmed by our difficult circumstances and create a life that although may be different from the one we envisioned, be meaningful and joyful.  To not be defined by our condition but rather be defined by the successes that we achieve despite it.

HAWMC Day 14: Trying to take on the world…

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Welcome to the Health Activist Writer‚Äôs Month Challenge brought together by WEGO Health ‚Äď a social network for all health activists. ¬†Again, I am participating in the annual Writer‚Äôs Month Challenge in which I will be writing about my health activism and health condition based upon¬†given prompts.

Tuesday 14th April: “I feel best when…”¬†

Write about moments when you feel like you can take on the world.  Where, when and how often does this happen?

Again this is an extremely difficult prompt for me to answer.  For some time now, too long to remember when it started, but the symptoms have become much more severe and debilitating.  As well as the deterioration in the severity of the symptoms, the symptoms themselves over the years has become constant.

It seems now, therefore I never get a respite from the symptoms such as the dizziness, trembling in the legs and pain.  Not all the symptoms, however, are constant, for instance, visual disturbances are provoked by certain triggers, and although these symptoms are not constant, they still occur more than they used to.

Therefore, as I never get a break from living with the symptoms as a result, everyday can often feel like a struggle, and can feel that I am never feel my best and able¬†to take on the world. ¬†This is especially the case, when going out after a restless night’s sleep due to pain, which has been the case for a few months. ¬†Furthermore, as the trembling and dizziness is so bad, it is a struggle to be able to get out of the house, never mind finding the stamina to take on the world.

Living with symptoms which are constant can make it difficult to be able to take on the world
Living with symptoms which are constant can make it difficult to be able to take on the world

Although, I do find that when I am feeling at my worst due to the pain and trembling in my legs as well as the dizziness and I somehow find enough strength and determination to achieve something that I have struggled to do, such as going to a place that is difficult for me (e.g. retail stores which have high ceilings or a lot of fluorescent lights).

When I do, I suppose it is the closest I can feel to being able to take on the world; I experience a surge of confidence when I have been able to battle through the debilitating symptoms to achieve a goal.  I cannot remember, when the last time it happened, but I can remember feeling so happy and proud of myself after managing to stay in a local Next store despite struggling to cope with severely trembling legs and horrendous dizziness.

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The symptoms were so severe that during the entire trip, I felt like I needed to get out of the store, and go home.  However, despite how bad I felt, I fought through the symptoms and managed to stay in there, even long enough to queue and buy an item of clothing.  For me, at this time it was an immense achievement as there were many times when I was unable to go in the store due to my symptoms.  I also notice that when I am able to push through the symptoms, and able to accomplish a goal, I am also able to do more and go to other places too.

Perhaps it is the little achievements that we as spoonies manage to carry out despite living with debilitating and continuous symptoms that can make us feel like we are able to take on the world.

 

HAWMC Day 12: When in Need of Self-Care…

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Welcome to the Health Activist Writer‚Äôs Month Challenge brought together by WEGO Health ‚Äď a social network for all health activists. ¬†Again, I am participating in the annual Writer‚Äôs Month Challenge in which I will be writing about my health activism and health condition based upon¬†given prompts.

Sunday 12th April: Day of Rest

Kick your feet up! ¬†What is your ideal day in? ¬†When you’re having a bad day, or a long week – how do you relax, recharge, and reset yourself?

Self-care can be defined as the process of maintaining health and managing chronic illness through health promoting practices and self-management.  It could also be defined as coping strategies during relapses or flares of symptoms.  Self-management are behaviours that are performed in response to signs and symptoms of illness.

When living with a chronic illness, therefore it is important to embed¬†self-care and self-management¬†practices into one’s routine. ¬†Perhaps one important aspect of self-care is having a day of rest on days in which symptoms are particularly bad, or even days following a relapse to allow the body rest and recuperation, and a chance to regain depleted energy levels.

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Recently, the symptoms associated with my neurological condition such as pain, dizziness and the trembling and weakness in the legs have been debilitating; often finding they become worse days after trips out with my carer.  As a result, I have been in need of days of rest myself, so this post should come easy!

These are some of my top tips for activities to put into place on those bad days, or just for when you need to relax, recharge or recuperate from life with chronic illness:

  • Date with Netflix (other streaming service are available!) or DVD: When I am having a bad day, or in need of a quiet or relaxing day, then watching a film is one of my favourite ways to spend my time, especially for someone who is somewhat of a film buff. ¬†In particularly I love romantic dramas or even a good romantic ¬†comedy. ¬†Nicholas Sparks adaptations, such as Safe Haven, The Best of Me and The Notebook¬†are amongst my favourite films to watch when having a bad day. ¬†Or, the¬†need of a quiet and relaxing day is a perfect opportunity to discover new films to enjoy20150411_183711
  • Art Therapy: The pain that I experience in my legs has been really bad of late. ¬†So bad that it is hard to concentrate or think about¬†anything else. ¬†A while back, however I remembered an article that I read that discussed the new craze and resurgence of colouring books for adults. ¬†In the article it suggested that the art of colouring-in is very beneficial for relaxing and beating stress and anxiety. ¬†Colouring allows a person to concentrate and escape from their thoughts and daily life in a similar way that mindfulness does. ¬†At the same time, I seen advertising for a new magazine called Art Therapy, which has pages of different patterns and designs for users to colour-in, also including pages dedicated to insights ¬†regarding to mindfulness and relaxation. ¬†Basically the magazine allows for quality time with yourself. ¬†I subscribed almost straight away and after receiving the first issue, I have been colouring during my days of rest and has found it has been a great technique to distract myself from the pain. ¬†It’s also really fun!20150404_182614
  • Pampering!: Nothing like a bit of pampering to relax and give yourself some self-love. ¬†If I am feeling down or had a bad week, then I love nothing better than to use one of my luxurious nail kits and paint my nails. ¬†Whilst Mum and I were in Bath, and my pain was bad, she went¬†into the local Lush store and bought me a Massage Bar which includes an oil which has been shown to increase serotonin levels in the brain. ¬†A great way to give yourself a little pampering and lift your mood at the same time!20140920_165005
  • Create a happy and relaxing playlist: Music has been shown to have a positive effect on mood and well-being. ¬†And I love music and have songs on my iPod that triggers a special memory or instantly makes me smile. ¬†So, why not create a playlist of happy and uplifting songs to put on your MP3 player for when you need a pick me-up, or relaxing and chilled music for the times you need to unwind and recharge.
  • Create a Comfort Box: I have written about the concept of a comfort box in previous posts. ¬†But simply, a comfort box is a box that you can fill with things that brings you comfort, joy and relaxation. ¬†Ideas to put in a comfort box include craft kits, pictures of happy times, favourite books, films or television boxsets. ¬†Other examples include scented candles, favourite snacks or even a journal. ¬†The comfort box can even be placed under or near your bed so that it can even be of use when stuck in bed due to chronic illness.

    Inside view of Comfort Box
    Example of a Comfort Box
  • Spend time stroking your pet: Take time stroking a pet (if you have one) as research has found that doing so can lower your blood pressure, helps the body release a relaxation hormone, and even helps cut down levels of a stress hormone. ¬†And it has beneficial effects for the animal too!

A Bad Day Does Not Mean The End of the Day…

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...
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...
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:

Today is not over yet.