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 win 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 its 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 does 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 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.

“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.

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.


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’.

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 22: Finding Sanctuary Amidst the Chaos 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.

Wednesday 22nd April: Hobbies 

Running and 3PM dance parties are some of our favourite hobbies at WEGO Health.  Tell us, what are YOUR hobbies?  Love to crochet?  Can’t stop collecting rocks?  Take photographs of everything?  Share your favourite past times.

Sitting here preparing the post for today, I feeling particularly bad due to the symptoms I experience as a result of the brain stem lesion.  The dizziness and vertigo are making it difficult to do anything due to the severity, and the trembling in the legs is so bad that it has already lead to several falls, and it’s only early afternoon.

Today’s prompt above asks us to write a post about our favourite past times that makes us happy and provides us with a respite from life with chronic illness.  This is a post that I have already written during a previous #HAWMC and which you can read here.

Instead, I have decided to write a post about the little practices and routines that help me during a particularly bad flare.  By doing so, I not only hope to help others who may find comfort in these during their own relapse, but also by reminding myself of the little things that give me comfort and pleasure even during the bad days, I can also help myself in the process.

An important aspect of living with chronic illness, is in my opinion, having your own personal sanctuary; for me, this is my bedroom.  My little haven where I can go to escape from the stresses of everyday life, and where I can receive comfort when chronic illness is beating me.  It is also an homage to me, filled with everything I love.

I love butterflies, as they are a symbol of hope and change, and as a result there are a lot of decorative touches with butterflies throughout my room.  The space therefore, for me is not only comforting but is also a space where I would love to spend a lot of time, which for someone living with chronic illness is vital.  Little touches such as soft and luxurious cushions also gives comfort for the times when there is a need to stay in bed for long periods.  I have also added things like inspiring quotes and affirmations throughout my room, cards pinned to my positivity board, prints hanging on my wall, or on little trinkets to keep in my comfort box.  Including these affirmations and positive quotes in my personal space, is a reminder that despite the struggles faced as a result of chronic illness, things however will get better.

Furthermore, living with chronic illness and as a result spending most of the time at home can lead to feelings of isolation and loneliness.  Making new friends and maintaining existing friendships can be difficult.  As a result, I have used the internet and social media to meet other people also living with chronic illness, and have even made several pen pals.  Writing is something that I love, and so using this hobby, I write letters and cards to others who are also struggling in the hopes to help lift their mood.  By helping someone else, it also helps to lift my spirits also, and is reciprocated by lovely and thoughtful cards dropping on to my doorstep.

When it seems that chronic illness is controlling my entire life, and due to the severity of my symptoms as mentioned above, a lot of time is inevitably spent in the bedroom, lying down and trying to find any relief.  During these time, I find that entertainment is a vital tool, not only keeping myself occupied but also to distract myself from symptoms such as pain, dizziness and trembling in the legs.  I often find solace in various films and TV shows on streaming services such as Netflix and Amazon Prime.

Recently, I have loved watching episodes of ‘Once Upon A Time’, often watching several episodes concurrently.  During times of painsomnia (insomnia as a result of pain), I also find watching films or TV series on my tablet to occupy my nights without disturbing anyone else!  Books are also fantastic distraction tools, as they often pull you into the story, that you lose yourself in the plot, forgetting about everything else.  Audiobooks are a great alternative when symptoms makes it difficult to physically be able to read.

Addictive viewing amidst a bad flare in symptoms
Addictive viewing amidst a bad flare in symptoms

As mentioned in earlier posts this month, colouring books are the new craze and one which I have bought into.  They are incredibly relaxing as it helps the mind focus on the present and not on any stresses that may be troubling an individual.  I have found it particularly effective in helping to distract my mind from the pain in my legs.  I love the intricate patterns and detail that appear in the adult colouring books, which are coming popular and provides you with some artwork to decorate your living space! I also enjoy other craft projects such as making cards, and sometimes even a go at jewellery making.  Also, a great way of being productive amidst being physically incapacitated by symptoms.

Painting my nails is just another hobby and activity that I like to do during the bad times as a result of chronic illness.  Living with a variety of symptoms affecting the body, and even sometimes noticing physical changes as a result can be difficult and lead to issues surrounding body image.  For me, living with constant trembling in the legs, and very often in the hands can be miserable and very uncomfortable, noticing small tremors in my hands serves as a physical reminder that there is something very wrong with my body, so to make me feel better, I like to paint my toe and fingernails some bright and bold colours puts a smile on my face and makes me feel better and more confident about my appearance despite these troublesome symptoms.


HAWMC Day 16: A Focus on the Present…


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 16th April: Life Goal

What’s one thing that your 10-year-old self thought you would do?  Can you still do it?  How would you approach it to make it happen?

Me at ten years old really seems like a lifetime ago; more than the nineteen years that have passed since.

In all honesty, I cannot remember anything that I thought I would do as an adult.  By that age, the dizziness that now is constant in my life, had started.  At ten, the dizziness was not constant, but was experiencing episodes of severe dizziness and vertigo.  These episodes were becoming very frequent, and as a result, it felt like most of my time was spent waiting for the next attack.

As at the age of 10, I was not really aware of what was happening in regards to my health and the reasons for the dizziness; but experiencing frightening symptoms at a young age can be anxiety provoking.  It makes you aware of the present, constantly on edge for the next attack. As a result of waiting and worrying for the next attack of the dizziness, I was therefore not thinking or making plans for the future.  I was too preoccupied on the present and the symptoms that were afflicting my life.

Life often has a way of making us to look at the past, present and future
Life often has a way of making us to look at the past, present and future

Although, as a child who has always been studious, I suppose that I have always had the wish to further my education and attend university.  At that age, like many children at that age, my career aspirations were constantly changing; from wanting to become a teacher at one point to wanting to become a nurse during another.  Even if I do not make any more of my past aspirations a reality, at least I have made that university plan a reality, gaining a degree in Psychology.   Attending university and getting that degree whilst living with a neurological condition, and battling against the dizziness, fatigue and pain was not easy and had to have a lot of help (such as a buddy to take me to lectures) from family as well as the university staff to make it happen.

Fast forward to me at twenty-nine and I suppose I still tend to focus on the present (and occasionally on the past) and not on the future.  It can be scary and worrisome to make plans for the future when living with a chronic illness, as we have no control or even an idea as to what our health will be like in months or years to come.  Experience from having to cancel plans with friends as a result of chronic illness, warns us of the perils of making short-term plans, so making more long-term plans is even more difficult.



Over the past several years, the symptoms caused by my neurological condition, have become increasingly worse, so looking ahead to the future is a frightening prospect at the thought that in the years to come, my condition will be even worse than it is, therefore, perhaps when living with a chronic illness it is best to live in the present and appreciate all the little happy moments that happens in the here and now.

Today's a gift.         That's why it's