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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

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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In Chronic Illness

Where there’s a will; there’s a way….

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In my last post, I wrote about my disappointment at not being able to stay at the local multiplex cinema to see Les Misèrables – a film that has been on my ‘must-see’ list since I heard about the film.

However, I have now actually seen it!!  Although it meant that my Personal Assistant and I had to travel further afield to a cinema that is not as big and imposing as the cinema that is nearby.

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And it has made me realise that although our lives is plagued with problems as a result with chronic illness – and often we feel that it leaves us unable to do things that we once enjoyed.  However, maybe the last statement is not true – maybe the way we used to do something is something we are unable to do; but there may be another way that we can still participate in the particular activity.  We just need to find a different path to be able to enjoy our chosen activity.

Not that the cinema was without problems for me – all of the stimuli from objects flying towards the screen, the loud audio and high ceilings left me feeling very dizzy, and often had experiences of vertigo and vision lost throughout the film; but even so I thoroughly enjoyed the film and found a real sense of accomplishment that I managed to overcome all the unpleasant symptoms and stay to watch the entire film.  I could not recommend the film enough – the beautiful songs and the incredible performances of all the cast (and in my opinion, even include Russell Crowe in this) carries the audience through a number of emotions throughout the film – and yes, I cried several times through the film.

That old adage is indeed correct – “where there’s a will; there’s a way!”

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In Chronic Illness

Learning to Live with Disappointment with Chronic Illness

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Disappointment is often something that you live with when living with any chronic illness – due to fluctuating symptoms and flare ups we often have to miss special occasions or cancel plans with friends or family.  And followed by cancelling of plans, comes the inevitable pangs of disappointment of missing out on such occasions.  This disappointment is even more amplified when friends talk about how wonderful the night was; making you feel even more miserable that you missed out (again!).

I felt this pang of disappointment recently – one of my goals for the beginning of the year was to visit the cinema as I really want to see the film version of Les Misèrables.  However, when I attempted the trip to our local multiplex cinema, I was so overcome with the dizziness and vertigo that I was just unable to stay in the building.  Of course, I felt extremely disappointed – in myself and my broken brain; stopping me from enjoying something as ‘normal’ as visiting the cinema.  I all honestly, the experience made me feel like a failure – failure as I failed to achieve a goal that I so desperately wanted to accomplish.  Hopefully, this is a setback and one day I will be able to go into that cinema, and even be able to stay long enough to watch the film.

So how should we ‘spoonies’ cope with these inevitable disappointments when we are unable to attend events or accomplish goals we wanted to achieve?

Well,we fist need to acknowledge the disappointment and anger that we may feel towards the illness that often feels as having robbed our lives. Then after acknowledging the anger we then have to deal with it.  This could be going to counselling or attending a support group associated with your particular condition.

Educate yourself, of your condition – there is no such thing as an overeducated patient.  Read as much literature as you can; and learn how the disease or illness can affect the body.  This can make it easier to perhaps plan for such times when we are invited out somewhere or planning trips somewhere, and perhaps being able to come up with a ‘plan of attack’ – a plan for dealing with such problems that can arise as a result of the particular health condition.

Perhaps, the biggest lesson that I have learnt is that we are all more than our condition.  We, of course, need to acknowledge the existence of said disease or illness, however it does not need to be self-defining.  Although there may be certain activities or have certain limitations, there are still however, plenty of things that we ARE still able to do.

It is often important when dealing with disappointment after not achieving goals, it still to keep a positive attitude as research has shown that being positive despite illness makes it much more easier to cope with.  Be grateful for everything that you do have rather than focusing on everything we haven’t or focusing on pain or our negative situations.  Perhaps keep a gratitude journal and list all the things that we have been grateful for on that day.

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How do you deal with disappointment?  And more importantly how do you cope with the disappointment?

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In Chronic Illness

Winter and Ice has arrived!…My Nemesis…

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Ice crystals Hey Everyone I hope that everyone is well and so far is experiencing a great 2013!  For those living in the UK, as I am you may be aware that the country has been affected by snow and icy conditions; schools have closed here in Wales because of widespread icy conditions therefore making driving hazardous. I know for many, snow brings joy and happiness – the picturesque scenes that it creates as well enjoying snowball fights and so on.  However, for many people; those in similar circumstances such as myself, it can create anxiety, even leaving some housebound during these weather conditions.  For example, this morning I had an appointment at the dentist; however, I was unable to attend because where I live was extremely icy because of the ice that developed overnight.  Myself, as well as my parents were concerned due to my impaired mobility and balance problems that I was at a high risk of a fall…I am very fortunate that despite the numerous and often severe falls that I have experienced, I have not broken any bones, so we did not want to risk anything that may potentially break this record!! The Winter can be a difficult time for anyone with a neurological condition like mine; especially as the very cold weather can make the spasticity in my legs worse than usual.  As well, as heightening the nerve pain. So, what are some of the ways in which those like me with neurological conditions can cope with the icy and winter conditions?  Here are some tips that I have found from magazines and the internet:

  • Keep warm!  Extra layers such as thermal underwear can keep the heat in, and stop symptoms such as nerve pain from getting worse because of the very cold weather.  And don’t forget to keep hands and feet warm with thick socks and gloves as well as a warm winter coat, hat and a scarf when out and about. 
  • If the nerve pain is confined to a particular region in your body, then make sure that region is well protected from the cold as the cold can heighten the amount of pain experienced
  • Hot water bottles and heat pads can be extremely useful for extra warmth – or perhaps, use an extra thick blanket, or invest in a ‘slanket’ which is a blanket with sleeves and even some has a pocket for your feet!  Great for keeping warm when watching TV on those very cold nights!
  • Keep your home warm – the ideal temperature for your home during the winter month is between 18ºC and 21ºC.  And the bedroom at night should be kept above 18ºC
  • Stay active as it increases the circulation and generate heat
  • If nerve pain is much worse during the winter months than perhaps it would be a good idea to speak to your doctor for extra medication to help during these months
  • If it isn’t necessary than it may be an idea to stay indoors especially if you experience problems with balance in order to prevent falls
  • If you do have to go out for any reason than make sure you wear appropriate footwear; for example flat footwear with rubber soles provides better traction on the snow and ice than leather soled footwear or high-heeled shoes
  • Where possible make sure that you use handrails
  • Take small steps in order to keep your centre of balance and walk slowly
  • Avoid carrying heavy shopping bags, especially on steps

For more information:

How do you cope during the Winter months; and particularly when there is snow and icy conditions?  Are there any other advice you can give to cope during these hazardous weather conditions?

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