The ‘Spoonie’ Spirit of Christmas…



Christmas – it’s often known as the ‘most wonderful time of the year’. It is also however, a stressful time of year, with all the preparations that need to be made – the presents, food, decorating the home and so on.  Add living with a chronic illness to the mix and the stress is exponentially increased.  The fatigue that often accompanies many different chronic conditions makes it very difficult to plan for Christmas, or even to feel the joyfulness of this time of year.

Whilst everyone is making lists of all the material goods that they wish to be under the tree come Christmas Day; we spoonies are wishing to be free of the debilitating symptoms that affect our whole life.  Simply, we wish for a cure; a cure that will end the chronic illness in which we live, so we can live a normal life.

Give back to those who help us throughout the year...
Give back to those who help us throughout the year…

This year, however, whilst shopping with my carer for presents for my loved ones – parents, friends that have been there for me throughout the year, and of course my dog, made me very happy.  It was then that I remembered the old adage ‘it is better to give than receive.’  And this is true, especially when living with a long-term chronic illness – Christmas allows us the opportunity to give back to those who are there for us everyday of the rest of the year.  The presents we give, of course, do not have to be expensive, but they are simple small token of thanks for everything that they do for us.

Speaking to my close loved ones, they often speak of the helplessness they feel; they are not able to take away the hurt, upset and anguish that accompanies chronic illness, and as much as they wish they could cure me they obviously are not able to do so.  However, instead they do what they can; they offer to help in the ways that make my life easier such as taking me to places that I need to go, be there for hospital appointments, do the little chores that I cannot do, as well as doing the little things that lifts my mood such as buying me chocolate or putting on my favourite film, and during holidays such as Christmas buying me little gifts to cheer me up as well giving me things that are practical.

Therefore, being able to give presents at this time of year, makes me very happy that I am able to do something, even if it is a small token of gratitude, and give back to those who give so much to help me throughout the entire year.

After all, isn’t giving to others encompasses the spirit of Christmas?


This post is for the December edition of the Patients for a Moment Blog Carnival which this month is being curated by Abigail from Hidden Courage.


A Time to Give Thanks!!…


Welcome to the twenty-eighth day of the National Health Blog Post Month Challenge hosted by WEGO Health.  Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

A Time to Give Thanks: What’s the one thing you’re most thankful for?  Write a list of three things that you’re thankful for, excited about, or inspired by.

Although it’s extremely difficult living with a chronic illness, it still is however important to remain grateful and give thanks for everything that is good in our lives.  We must do this in order to remain positive and upbeat despite our journey through illness so we remain resilient.  So what are the things that I am most grateful for despite living with a neurological condition?


I am thankful for my friends and family.  Having material items such as tablets, and other computer devices to stave off boredom and to keep me occupied whilst stuck in bed, however, it is the people in your life that are constantly there for you and make travelling the road of chronic illness so much easier.   For example, I blessed to have amazing and supportive parents.  Parents who are always there for me; taking me to places where I need to go, or do little jobs that I am unable to do.  For example, whenever I am stuck in bed, my Mum or dad regularly comes to my room and asks whether there is anything I need, such as a drink or something to eat, and they will bring them up to me, without any complaints.   In addition, a couple of weeks ago, when I was going through a particularly tough time with my illness, and as a result was constantly in tears, my Mum was there for me, whenever I needed her – she would phone me from work to see how I was, or would give me a cuddle, and wipe my tears for me.  My parents make it easier to live with my condition everyday, and no amount of words can adequately express my thanks and gratitude to them or how much I love them.

Then there is my dog Honey, and although she can be incredibly cheeky, and naughty at times, she is at other times the most sweetest, caring and loyal dog.  For example, whenever I am having a bad day, or feeling depressed, she is giving me cuddles and kisses.  Or, if my legs are particularly bad and I am falling over constantly; she is there by my side instantly to make sure that I am OK and not hurt.  And then she will follow me around; never wanting to leave me out of her sight until I am safely lying on a sofa or on my bed.  Last week, when my parents were out of the house doing shopping and other chores, and I was unable to get out of bed, Honey would regularly run up the stairs and peer into my room to check on me and satisfied that I was fine, she would return downstairs to lie on the sofa.   Once I fell whilst on my own, and was unable to get up afterwards, and she lay down beside me the whole time, until Mum came home approximately 20 minutes later, soon as she came through the door Honey rushed to her to alert her that I needed help.  She is a super dog!!

And I am finally thankful for my best friend, and surrogate sister Aisha.  Aisha has been my rock, and her friendship and support has meant to much to me.  Every day she sends me a message on an instant messaging service or via Twitter to see how I’m doing and if I am having a rough time, or need someone to talk to, she is always there.  And even during tough times, she always makes me smile with her words, and take comfort in her encouraging speeches. Once, there was a time, where friends were walking out of my life and cutting all contact with me, so I am blessed and grateful that I have found such a wonderful, caring and supportive friend.

Looking back at this prompt, I have learned that it isn’t the little material items that we should be grateful for but instead be thankful for the people (and pets!) that are in our lives and make life with illness easier and more tolerable.

What things are you grateful/thankful for?  As ever would love to hear your thoughts so please comment below…

HAWMC 2013 Day 14: Sharing the love! I would like to thank…




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 prompts given.

Today’s prompt reads as follows:

Thank a few of your fellow Health Activists for what they have done.  Call them out by name or twitter handle.  Share your love!

Ever since I began this blog back last January I have been blessed to have met some wonderful people through the blog and twitter.  This gives me the most wonderful opportunity to thank some of them who have made the most impact; whom have been inspirational; and those who have not only given me support, but have also supported so many others.

The first person I have to thank is Marissa (@marissaabledis) who was the first person who inspired me to start the blog; as well as given me the confidence, and for always supporting me in everything that I do.  As well as this, I would also like to mention her outstanding work last year for her fantastic ’12-12-12 Project: 12 Months; 12 Journeys; 12 Lessons’ series, in which I was honoured to be a part of.  In this project, Marissa highlighted various chronic conditions, educating herself on all them as well as through a podcast learn about the person’s journey with the condition.

As well as all this, Marissa is a fantastic advocate for those living with chronic dizziness; and is a great supporter of everyone living with dizziness.  Soon she will be embarking on a series of podcasts with a friend of hers about living with dizziness.  The series will be called ‘The Spin Sisters Podcast’.  The details can be found on their Facebook Page .

Another health activist who I really admire is Pamela (@dystoniamuse) and I truly love her blog ‘Chronicles of a Dystonia Muse’; it’s a light-hearted blog which chronicles Pam’s experiences with a neurological condition called Dystonia.  Pam is a true advocate for patients with Dystonia; and does a lot of work to bring awareness of the condition as well as supporting those already diagnosed.  Not only is her blog fantastically well-written; but Pam has also become a great friend and supporter.  Pam also makes the effort to comment on many posts that I have written, all of which complimentary.  I really appreciate the support and care Pam has shown me, and this is a brilliant opportunity to thank her, for her support and let others know of her great work as a health advocate.

Another health advocate that I would like to acknowledge is that of another good friend; who also helped set the ‘Spoonie Book Club’ that I am a part of, is Anya from the brilliant blog ‘The Patient Patient‘.   Anya successfully advocates for herself and others living with long-term health conditions.  Anya mentors others living with long-term chronic illnesses as part of the Expert Patient Programme as well as talking to medical students on the patient perspective of the biopsychosocial model of disease, which can only benefit all patients as newly qualified doctors reach a better understanding of what it is like for us all living with chronic illnesses, leading to better understanding and treatment from the medical profession.

And lastly I have to thank all those involved with the upcoming magazine – ‘Unseen Magazine‘ – a magazine for all those living with chronic illness; attempting to improve the lives of everyone battling long-term health conditions.  They really deserve so much recognition for their work, and for giving us all living with chronic illness a voice, and providing us with something that we can relate to.  And a special mention to the magazine’s editor Aisha who have not been another great supporter of mine but has truly become a special friend too.

Other blog and health advocates who are worth a mention:

Kim – ‘Hope Whispers‘ – a great blog chronicling life with a rare liver disease, Budd-Chiari Syndrome

Sarah Levis – ‘Girl With The Cane‘ – another great advocate for those with disabilities.  Sarah uses her experiences with acquiring and living with the effects of physical disability as well as her work with those with intellectual disabilities, to approach and write regarding disability advocacy, education and associated issues in her fantastic blog.


Who are some of your favourite health activists or bloggers?  Share the love and comment below!….


On the 12th Day of Christmas…



Welcome to the 12th (and final day!) of the ’12 Days of Being Chronically Thankful’ a series of posts in which I divulge and explore all that for which i am thankful for whilst also living with a chronic illness.

And finally, on the ’12th Day of Christmas’ I was thankful for…a TV show!

The one TV show that I would say that I am thankful for is ‘Grey’s Anatomy’ – one of the TV shows that I will watch when I am unwell, and especially on the days when I am so weak and dizzy that I am stuck in bed.  The show is incredibly dramatic for it to be gripping, but also has an incredible amount of humour thrown in for it to make me laugh and cheer me up when I am feeling down.

And for that I am ‘chronically’ thankful!

On the 11th Day of Christmas…



Welcome again to the ’12 Days of Being Chronically Thankful’ in which I share all those things which I am thankful for whilst living with a chronic condition.

On the ’11th Day of Christmas’ I was thankful for…a photograph!  And this is the photograph that I have chosen to be thankful for:

My family and I at graduation
My family and I at graduation


I am grateful for this photograph as it is a reminder of my greatest achievement – that despite living with a chronic illness, although at that point it was still undiagnosed, I still managed to leave university with a degree!  A reminder that although I, and many people like me, are chronically ill, and although we may have more bad days than most other people, that does not mean that our lives has to be meaningless and empty, and that we are still capable of achieving our goals.

It’s also a reminder of a great day – graduating after 3 years of hard work and sharing that moment with the most important people in my life – my family.

And for that I am ‘chronically’ thankful!

On the 9th Day of Christmas…



Welcome again readers, to another post for the ’12 Days of Christmas’ in which I divulge all the things that I am ‘chronically’ thankful for despite living with a chronic illness.

On the ‘9 Day of Christmas’ I was thankful for…a painting!  Again, I am not a huge fan of art, and do not really have a favourite painting, but funnily enough I did fall in love with a painting which I saw whilst out on an outing with my personal assistant, and is by a local artist Sylvia Hughes Williams.




I just love the incorporation of the inspiring quote with the gorgeous picture of the butterfly.  The quote reads:

“Just when the caterpillar thought the world was over…it became a butterfly”


I read this quote a while ago, and caught my eye, as not only because I love butterflies, but also I love the positivity of this quote.  In relation to living with a chronic illness, it reminds us that just because we have limitations due to whatever illness we may be living with does not mean our lives our over but instead something positive can come out with such illnesses…these positives may only be small but they still make life worth living.

So, as soon as I saw this picture, I really found myself resonating with the quote and the print itself, and at some point during the year I hope to even buy the print and place it in my bedroom, and can look at it on those bad days, and remind myself of the positives in life…because there are so many.

And for that I am ‘chronically’ thankful!

On the 8th Day of Christmas…



Welcome everyone to another instalment of the ’12 Days of Being Chronically Thankful’ in which I share some of the things that I am thankful for (based on given categories – see above) despite living with a chronic illness.

Today, on the 8th Day of Christmas, I was thankful for…a poem!  Now I am not really a huge fan of poetry, and there are only a few that I am familiar with.  But if I were to choose one which inspires me then I would choose ‘If You Think You Are Beaten’ by the writer Walter D. Wintle:

If   an inspirational poem

I love the poem as it is a reminder that we must all believe in ourselves and how we see our selves is the most important – rather than believing in what other people think of us.  It is so easy when living with a chronic illness is to think and act like a victim, but as the poem suggests we should rather act like a victor and challenge aspects of ourselves and our conditions to be winners in whatever we do; to do things that we may never thought were possible due to certain limitations.  It’s all about attitude and our view of self as well as overcoming challenges that will inevitably face everyone.

And for that I am thankful!

On the 7th Day of Christmas…


Again, I so sorry to have missed another day for the ’12 Days of Christmas’ – again, yesterday was a bad day so I was unable to get the opportunity to write a post.

The 7th ‘Day of Christmas’ asks us to write about a physical activity or sport that we are thankful for whilst living with a chronic illness.  I suppose for me, I am thankful for the ‘AeroPilates’ machine that I together with my Mum.  Conventional exercise such as aerobics, or even sports such as hockey, netball or football is no good for me due to the weakness in my legs, I am unable to stand or even walk for very long, so any forms of exercise is very difficult for me.



This is why I am so grateful for the ‘AeroPilates’ machine as I am able to do exercise without worrying about my legs giving way, as all the exercises I am able to do whilst lying down.  The machine also comes with a rebounder, which is like a mini trampoline which fits at the bottom of the machine – with this, you are able to get a cardiovascular workout, and can even get your heart rate faster than jogging on a treadmill.

So, with the ‘AeroPilates’ machine I am able to get a full body workout with one machine without the worry of my legs giving way potentially causing a serious accident! This is especially important for a condition like mine, as without exercise, the muscles that are already weak can go into atrophy – making them even more weak, and leaving me with the inability to use these muscles.  As my doctor says ‘use it or lose it’!  Thanks to the ‘AeroPilates machine’ I can!!  I have seen no real improvement in terms of my legs becoming stronger, and have been getting worse, but hopefully with exercising regularly on the machine the weakness won’t progress even further.

And for that I am ‘chronically’ thankful’!


On the 6th Day of Christmas….



Welcome to another post for the ’12 Days of being Chronically Thankful’, a revised version of the famous ’12 Days of Christmas’ for those living with chronic illness, like me.

On the ‘6th Day of Christmas’ I was chronically thankful for…a theatre production!

Now, living with a chronic condition like mine, I am unable to attend a theatre production in person – most theatres are very big with high ceilings, as most of you are aware, high ceilings, and flashing fluorescent lights are a trigger for the episodes of severe vertigo that I often experience, and hence going to see a theatre production would make me extremely unwell.

However, a few weeks back, during one of my first trips out with my P.A, we visited my local library, and lo and behold I found a copy of a DVD of a production of ‘Les Misèrables’ that was filmed at the O2 for the show’s 25 year Anniversary.  I was so excited as  it is a show that I haven’t wanted to see for years, but because of my condition I have been unable to go and see it in London.



As a result, I instantly decided that I would rent it from the library, and on a day in which I felt really bad, leaving me unable to get out of bed, I managed to watch it on my computer.  And I instantly fell in love with the musical – the story, the songs just everything about it!  And for a couple of hours, I forgot about how bad I felt, I was still aware of the dizziness and vertigo as they are hard to ignore!  However, I was so engrossed with the production of this amazing musical that I was able to ignore it, and just really enjoy the DVD!

And now I am equally excited for the film version of Les Misérables, starring Hugh Jackman, Russell Crowe and Anne Hathaway among others – and perhaps even planning a trip to the cinema with my Personal Assistant, it will be difficult for me being in the building but I am determined to achieve this feat!

And for that I am ‘chronically’ thankful!

On the 5th Day of Christmas….



Welcome again to the ’12 Days Of Christmas – a celebration of everything that I am thankful for whilst living with a chronic illness.  On the 5th Day of Christmas…I was thankful for an object!

The object that I am thankful for?  Well definitely lately it has been my crutch.  An object that comes with me wherever I go, and as in my opinion, symptoms have become worse lately, I find that I am needing it more and more whilst in the house.  I rely on this crutch, especially when out, as it often prevents me from experiencing falls ( sometimes falls are very bad, that even the crutch will not prevent them – but for the most part, it saves me!).  It basically just helps me to keep my balance and to help me walk everyday.

And not only is it extremely useful in helping me live my life with the condition, but the crutch is not one of those boring crutches that are provided by the NHS.  Oh no, my crutch is bright pink, is lighter and much quieter than the grey standard crutches (great for when Dad is on nights and is in bed during the day!!) – the crutch feels funky and chronically awesome.  Even when living with a chronic illness, it doesn’t have to stop you from being fashionable!


A picture of what my ‘cool’ crutch looks like!

And for that I am ‘chronically’ thankful!


To find out more about the crutch that I own and others in the range, then visit their website at: