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Now the Christmas and New Year celebrations are upon us; it also allows us the opportunity to reflect on the year that is nearly at an end, and to also look forward to the year ahead.

This time of year, allows us to not only reflect on the difficulties and struggles that have occurred due to chronic illness, but we can also reflect on what the year has brought us and express gratitude for the positive moments or for the people who have supported us and made life with chronic illness a little easier.

Every person; whatever their situation and whatever struggles they live with, every year brings many ups and downs.  And living with chronic illness brings more downs than ups, but still we are able to find gratitude in all the positives that happen during the year.  An example, of such a positive thing that has happened to me during 2013 is finding such a strong support network, especially on social networks such as Twitter.  This year has seen me find many special and caring friends that make living with my neurological condition a little easier – they pick me up when I am down or struggling, and send me messages of congratulations on the successes.  This year, through all the bad times, I am grateful for friends such as Anya and Aisha for all of their friendship and support, and of course all of the other wonderful spoonies who have messaged me support throughout the year, for which there are many – thank you!

Again, this year has also seen me gain another nomination for a WEGO Health  Award; so for the bottom of my heart I would like to thank the person who nominated me for the award – I am truly honoured.

I also have to be so thankful for everyone who has taken the time to read, liked, shared and commented on my many blog posts throughout the year.  I have shared much of my life and experiences of living with a neurological condition, and so I am grateful for everyone who takes the time to read, and perhaps even take something out of it, such as a little more compassion or understanding of those living with chronic conditions.  During the coming year, however I would like to connect with even more people living with and experiencing chronic illness, so please feel free to get in touch whether it be by email, Facebook or Twitter and share your story and experiences.

There were however, many downs also.  The symptoms that I experience such as the dizziness, trembling in the legs and the pain have all increased and worsened exponentially compared to when they first started.  In addition, the days where I am unable to get out of bed because of the weakness, pain or dizziness (sometimes all of the above!) have also increased.  This year has also seen the increased use of my wheelchair; last year, I only used the wheelchair on very rare occasions.  However, as the symptoms have become worse, with the trembling and weakness in the legs becoming such a problem, that the wheelchair is used at least once a week if out for long periods such as the days out with my carer, going to the social group that I attend and hospital appointments, and so on.  In addition, with all the dips that have occurred, depression, have also reared its ugly head at times making the journey through chronic illness even harder.

Me in my wheelchair that is now a regular part of my life this year
Me in my wheelchair that is now a regular part of my life this year

But now, as the year is drawing to a close, it is time to start looking forward and to the possibilities that the mew year has to offer.  The beginning of the year for me involves three hospital appointments for an introduction to a Neurophysiotherapist as well as tests to help narrow down the cause of the dizziness – so here’s hoping for more answers and an effective treatment plan! And next year I also have a cruise around the Mediterranean to look forward to in May.  And perhaps I will discover new and beautiful places to discover with my carer, although for me nothing could top ‘The Potting Shed‘ in Llantrisant.

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I am very excited for the first #spooniebookclub which is to be held tomorrow night at 8 P.M. (GMT) over on Twitter.  The first book that was chosen was one which we will all would relate to – a book which examines what it is like to live with a chronic illness – and as we were all under the age of 30 – this book seemed to be the perfect fit for us all.

Interestingly, after a discussion with a fellow book group member; we both felt that the writing style of the author felt rushed and forced as if she was merely writing down her thoughts as they came to her.  However, what if we were to look at it differently – as patients, we often have to wait a long time for answers; to get a diagnosis, wait for appointments.  So, isn’t it refreshing for a book about chronic illness to get straight to the point; to be concise and compact.  Each chapter is short, making it very easy to read little chunks when the reader feels up to it.  Fantastic for those like me who tire very easily but still like to read before going to bed.

The book I found was very relatable and encompasses the chronic illness experience beautifully – the author cleverly also uses several other patients and their personal experiences of living with chronic illness; each with a variety of different conditions.  In my opinion, this was a very smart move, as the range of conditions which can be considered as ‘chronic’ is large, and by including a variety of different conditions, the books feel even more relatable – if you are not able to relate to one person for a reason, then there will be another person included that you may relate your experience to.

The book encompasses everything that a person living with a chronic illness in their twenties and thirties are likely to experience in their life – leaving college or university and starting the path to their chosen career; making and maintaining friendships; starting romantic relationships and sustaining them, as well as the experience of chronic illness – hospitalisations, the patient experience both in hospital and in the ‘real world’.  Much of the book, I found reflected on life in the hospital – and as a someone with a chronic illness that does not require frequent hospitalisations, I felt that it somehow didn’t apply to my experience of illness.  However, the author does describe how ‘one of the only predictable things about chronic illness is its unpredictability‘; which I feel captures my experience of chronic illness beautifully – I never know how I am going to feel hour by hour, or day by day; and furthermore find planning activities and social gatherings very difficult as I never know if I will be able to attend, and if I do, often need to cancel such plans as I feel to unwell to go anywhere.

The only problem that I found with the book, is the obvious differences between the healthcare system between the UK and US.  Some of the book talks about the major financial implications that chronic illness causes; something which thankfully, we living in the United Kingdom have to worry about.  However, in contrast to this, the author also describes the relationships and contact with her medical team – often with patients being able to email or have easier contact when needed – which unfortunately does not encapsulate the experience with doctors or nurses here in the UK – instead my experiences have been one of long waiting times to see a medical practitioner, and having the hardest time to speak to a doctor even on the phone when things have become bad.

Overall, the book is very well written, and with the concise and compact chapters, makes it very easy to read in small chunks.  Reading it, I found some of my own experiences being fed back to me, as if ‘finally, someone understands exactly what I go through’.  The book was very easy to read, and managed to read the entire book in only a couple of days and really delves into the experiences of chronic illness that matter most in your twenties and thirties.

 

Has anyone else read the book?  What were your thoughts of the book?  You can share them here or on the ‘Spoonie Book Club’ Page which you can access on the top of the page.  Or you can even join us on Twitter at 8 P.M. (GMT) to discuss the book using the hashtag #spooniebookclub.

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