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#spooniebookclub Review: ‘Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties’ by Laurie Edwards

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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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In Chronic Illness

Being Patient and Being a Patient!

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I was reading an excellent article the other day, over at the wonderful blog ‘The Patient Patient‘.  In one post, Anya (who I have recently become good friends on Twitter) writes about what it means to be patient and being a patient,.  For example looking at the origins of the word patient.  It really is well worth reading; and all of you battling chronic illness will surely relate.

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Over the past couple of days, this article has particularly resonated with me.  The word ‘patient‘ can be defined as ‘someone bearing provocation, annoyance, misfortune, delay, hardship , pain, etc, with fortitude and calm and without complaint, anger, or the like’.  As a noun, however, the definition changes as ‘someone who is under medical care or treatment’.   Therefore, the word itself ‘patient‘ can also be used as a form of our identity – as many of us, especially when considering chronic illness, we are often under the care of medical professionals and are often receiving medical care or treatment.   Even more interestingly, Anya also delves into the archaic meaning of the word ‘patient‘ – according to the dictionaries the origin of the word can be traced back to Middle French and latin with the word describing as ‘one who is suffering’ or ‘one who suffers’.

It is ironic, however, that the word ‘patient’ has these two different meanings – as many of us can testify too – patients (those undergoing medical treatment) do need a lot of patience!  Take my case, I was referred due to the deterioration of many of my symptoms back to the Neurology back in early February.  It has taken several weeks, however, to even receive a letter confirming that I am on the waiting list to see a neurological consultant.

On the letter, I noticed that some of the details about myself, were wrong so following instructions set out in the letter, I phoned the relevant department to inform them of the correct details.  This little job itself, meant that I was on hold for approximately 15 minutes before speaking to a real-life person.  This obviously required a lot of patience in itself!  Then after taking all of the correct information, the secretary informed me that the average waiting time to even see a consultant was around 26 weeks.  That is almost 6 and a half months! This is typical, especially with a specialty like Neurology – at my local hospital there are no neurologists on staff; which means that I have to travel further afield to be seen, or wait until they have a Neurology Outpatient Clinic at the local hospital (which is are in itself).   Even waiting for an appointment to see a doctor at my local GP Surgery can mean a wait of up to 2 weeks.

 

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So, these anecdotes just goes to show that being a chronically ill patient needs a lot of patience – and to wait our turn to be seen by a consultant should be done without complaint – after all, making a fuss isn’t going to get us seen any faster, is it?  And as all of the media reports suggest the NHS is overstretched with all the demands of treating a vast range of unpredictable chronic illnesses.  However, I often myself go back and forward from being inpatient and wanting to see a consultant  as soon as possible, especially when symptoms are bad, to understanding how difficult the demands that are placed on the NHS are, and how I am sure many of the doctors and nurses, wish that they can see everyone as swiftly as possible.

So, instead of complaining, it looks like I will have to learn patience and wait until it is my turn to be seen…

 

Read Anya’s Post: ‘The Patient Patient: What’s in a name?‘

Follow Anya on Twitter: @anyadei

 

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Chronic Illness and Identity

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I was reading an interesting book regarding chronic illness, and through this some questions about chronic illness and identity occurred to me.

Obviously, living with a chronic illness does not define any of us – the illness is merely one piece of the puzzle that makes up our lives.  As well as being a patient with chronic illness, I have many other identities that make up my life – daughter, granddaughter, niece, cousin, friend, avid reader, blogger and so on.

However, can living with a chronic illness (and especially when living with a condition from childhood) influence a person’s identity?

 

My Identities!
My Identities!

For example, if I didn’t live with the spastic paraparesis which causes the stiffness, weakness and pains in my legs, would I still have an avid interest and love for reading and books, as well as a keen television and film watcher.  According to my parents, I was a book lover since I was a very young child, and perhaps the pain in my legs was a reason why I became such a lover of reading instead of taking an interest in sports.

For people, however, who develop a chronic illness later in life, it can threaten one’s identity, disrupting every aspect of their life, including hobbies and interests.  Sufferers of chronic illness may have to stop their beloved interests, for example, playing a favourite sport because of pain or fatigue.  As a result, it is said that the person may have to ‘reconstruct’ their self-image; for example, finding a new interest which the person can still gain great pleasure from, but not as a consequence to their health.

Lately, I have been struggling with the condition in which I live; I have been feeling even more tired than usual, the dizziness and vertigo have become even more intense and even the weakness, stiffness and pain in my legs have also worsened.  Because of this, my emotions have also been up and down – crying and feeling sad being a constant feature in my present.

Thankfully, I have found another interest, thanks to the new social group that I have been attending, I now added to my arts and crafts love – creating and making cards.  I have now made a couple – generally takes me longer to complete because my problems with manual dexterity.  However, I have grown to love making cards – its relaxing and allows a distraction from the pain and dizziness that I live with constantly.  I have even added a photograph of a card that I have made for my Mum for ‘Mother’s Day’ on March 10th!

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So, for everyone reading this also battling chronic illness – do you think that the illness has moulded your identity – influencing your choice of hobbies and activities that you enjoy?  Has chronic illness made you change particular hobbies and activities because you are  no longer able to participate in them?  Would love to hear your thoughts….

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Living with illness…is like using a revolving door…

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Hello to all readers new and old

Sorry that I have not been able to write a post sooner but life has been pretty hectic!  Lately, fatigue has been a constant feature in my life, so much so, that the hours that I have with my personal assistant has been extended over two days instead of using all the designated hours in the one day.  Added to that, is a new group that I have recently joined as well possibly being involved with setting up a brand new group for young people with disabilities in my local area.

And then of course, has been my health.  As most of you reading this, also living with chronic illness, will know, that life can be like a revolving door – symptoms can be stable and manageable and then out of the blue, there is a deterioration of said symptoms and then find yourself navigating said revolving doors through to yet more doctors visits, hospital visits, more tests and so on.  New symptoms appear, an example being the recent introduction of vision loss can be worrisome and can also question whether doctors have given the correct diagnosis, or whether it is possible that your condition is deteriorating.  New symptoms are like being handed pieces of an uncompleted jigsaw puzzle and then having to cipher where these pieces fit in the bigger picture of your condition.

And after the initial consultation with your G.P can often, particularly if the new symptoms are unusual or worrisome, result in (again!) being referred to the specialty that is connected with the particular health condition.  For me, not only have I referred back to Neurology, but am also awaiting for an appointment to seen an ophthalmologist.  Waiting for hospital appointments, not only can be long and tiresome, but also leaves you on tenterhooks; especially when the mail arrives each day, wondering whether today is the day in which that all important appointment letter will arrive!

 

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That only then leaves the preparation for the actual appointment!  If I can offer any advice to any ‘spoonies’ out there, it would be this:

  • Make sure that you prepare for the appointment beforehand – if like, me you often find yourself remembering various information that you wished to discuss with your doctor AFTER the actual appointment, then it can be a really good idea to write a list of questions and points that you wish to discuss before your appointment.
  • You might wish to write down all the symptoms that you have experienced, I know from personal experience that I often forget to mention some of the symptoms that I have been experiencing
  • It can be quite unnerving attending hospitals; the often produce anxiety and fear, and often will forget some of the information that the doctor has given you, so it may be a good idea to ask a friend or family member to attend the appointment
  • Take a book, or something else to distract yourself from the anxiety, or even just to occupy the long wait in the waiting room

Any other tips that anyone has regarding attending hospital appointments?  Comment below and share them!!

 

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I’ve Been Given a Liebster Award!

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I have been given a great honour by being awarded for a ‘Liebster Award’ by another fantastic blogger by the name of Sarah Levis, who herself hosts an amazing blog, which can be found at  ‘Girl with the Cane‘ (if you haven’t already been over the blog then it is a must read!).  Thank you so much Sarah for giving my blog its fist award.

This award is giving to up and coming bloggers who have less than 200 followers.  And ‘Liebster’ is a Germanic word which can mean sweetest, kindest, nicest, dearest, beloved, lovely, kind, pleasant, valued, cute, endearing and welcome.  Wow!!  A lot of meaning for one little word!

The award, also comes with the following rules:

  1. You must thank the person who  gave you the award
  2. You must display the Liebster heart on your blog
  3. Each person must post 11 things about themselves 
  4. Answer the questions that the person who has awarded you has set, plus create 11 questions for the people you have nominated
  5. You should nominate 3-5 up-and-coming blogs with less than 200 followers
  6. Notify your nominees and provide a link back to your post
  7. You’re not supposed to do “ping-backs”

OK, so ready, set, here are 11 facts that you may or may not know about me:

  1. I was born in a British Military Hospital in Germany
  2. I am an only child
  3. I have a 2:1 BSc degree in Psychology
  4. My favourite ever book is Little Women
  5. My favourite thing is to watch films in my pyjamas wrapped up with a blanket
  6. I love hot chocolate with cream and marshmallows
  7. I have read every Jodi Picoult novel
  8. I have a huge phobia of heights
  9. I love forensic crime shows, particularly CSI and Bones
  10. My parents call me an ‘Oracle’ as I know a lot of useful facts
  11. I have a huge crush on Simon Baker (but then who doesn’t?)

And I have now narrowed down the list, and have decided to give the following blogs a ‘Liebster’ Award!  Congratulations!!  You are all amazing:

Please visit all of these fantastic blogs! I have learned so much and continue to be inspired by them.

And now to answer the questions that Sarah has left for me!:

  1. Why did you decide to start blogging?  I wanted an outlet for my frustration that the symptoms caused by my condition affects me, but more than that I also wanted to educate and raise awareness of neurological conditions as well as invisible illnesses in general
  2. Are you a morning person or a night owl?  I am definitely a morning person – because of my condition, I become very tired in the evening, often causing me to be in my pyjamas by 7 pm!
  3. If you could only eat one food for the rest of your life, what would it be?  I would definitely choose to eat lasagna – I not only love eating it, but also love preparing it!!  In fact, I love all Italian food
  4. What’s you all-time favourite movie?  Now, that I have finally watched it, I would definitely say ‘Les Miserables’ – an amazing movie!
  5. What was your first concert?  I believe my first concert was when I was around the age of 12 and went to see a UK boyband by the name of Boyzone
  6. Have you spent all day in your pyjamas (as an adult)?  As a sufferer of chronic illness – and being unwell a lot, the answer is most definitely YES!
  7. What was your first pet’s name?  Where did that name come from?  My first pet was a hamster who we called ‘Peanuts’ and choose the name based on its colouring
  8. What’s your favourite board game?  Trivial Pursuit – as I usually win!!
  9. Do you know how to ballroom dance?  Absolutely not – I have no rhythm or coordination and would fall down a lot!!
  10. Can you play an instrument?  If so, which one?  No, I cannot play any instruments but would love to learn to play the guitar
  11. What’s your dream job?  It used to be my dream to be a clinical psychologist, and like to think that’s what I would be doing if it weren’t for my illness

And now everyone here are the questions for those who I have nominated:

  1. When did you first start your blog?  What were the reasons for doing so? 
  2. If you were an animal, what animal would you be?
  3. If you were stuck on a desert island, which 3 books would you choose to take with you?
  4. If you were stuck in a lift (elevator), which 3 people would you most like to be stuck with?
  5. Where is your dream destination?
  6. Favourite ice-cream flavour?
  7. What is your favourite room in your home?
  8. Would you prefer to spend the night in your favourite ‘going-out’ gear or in your pyjamas?
  9. If there was one object that could represent you; which object would you choose?
  10. What is your favourite movie?
  11. What would be the one thing that would be at the top of your ‘bucket list’?
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