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Hospitals, results and losing hope…

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Hello to all my readers

Sorry that I have been quiet recently and a distinct lack of posts from me.  Recently, I have been struggling with fatigue, and as well as this have had several hospital appointments which follow the appointment with a consultant specialising in audiovestibular medicine.  For those who do not follow my blog, or who do not know what audiovestibular medicine is, it is a branch of medicine which specialises in the diagnoses, medical treatment and rehabilitation with disorders of hearing and balance.  Doctors who specialise in this area, concentrate on patients with a variety of different problems including dizziness, hearing loss, tinnitus, speech disorders and abnormalities in eye movements.

My first appointment with the registrar back in November, revealed a problem mentioned above.  He noticed that whilst following his pen with my eye, there was a slight delay with my movements which indicated a neurological problem.  The doctor referred me to have some balance tests conducted to determine whether the dizziness is due to a vestibular dysfunction (inner ear disease) or not.  Here is a video which outlines the VNG test:

The test, which happened a fortnight ago was not pleasant and afterwards the dizziness was worse.  Last week, I returned to the hospital for the results…

During the consultation last week, I was asked to perform a test was I was not able to perform the previous week during the VNG test.  This test is known as the Diz-Hallpike test and involves the patient lying on a table with the head hanging over the end of the table. The doctor will then turn your head 30° to 45°.  The doctor during the test will watch your eyes for involuntary eye movements known as nystagmus.   The timing and appearance of the vertigo and nystagmus determines whether the vertigo is caused by an inner ear disorder or the brain.

After completing this particular test, my parents and I were taken back to the consultant’s room and were unfortunately informed that an inner ear disorder have been completely ruled out, and that there were some abnormalities during some of the tests which indicated a  problem with the central nervous system, i.e. the brain.  We were also informed that there is little that can be done, and although they are sending me to a rehabilitation therapist to learn some exercises to try and ease the severity of the dizziness, the consultant was not confident that they would help.

This was obviously not the outcome that we were hoping for.  It is not the first time that I have been told my a medical profession that the dizziness is very likely caused by a neurological condition; and it is not the first time that it is not anything that they can do to treat the dizziness – however, every time that I hear these words, it is like hearing them for the first time, even after accepting them after a previous appointment.  In addition, after repeatedly hearing that the dizziness is a life-long symptom that I will have to deal with, a little part of me still gets extremely upset and despondent.  I have always realised that the dizziness is very likely a neurological problem, and very unlikely to go away but after having it confirmed after various hospital appointments is still feels as if the small glimmer of hope that is inside of me becomes extinguished after hearing those words again and again.

Living with the dizziness, is like living with a permanent shadow following and lurking behind me wherever I go.  Always present and ready to strike at anytime. The dizziness at present is constant, as well as being severe and at times debilitating and coming to the realisation that it is life-long is a hard concept to get my head around and even harder to accept.  There are a number of people that has told me to hold onto hope that there is someone out there who could help me and that there is something that can be done – however the question is; is it wise for someone with a chronic illness after being told that it is a life-long condition to hold onto hope that a cure is out there?  Is holding onto such hope, only going to lead to more heartache and upset? Is it best however, to accept the reality as it is, and move forward with your life as the best you can despite the limitations that the chronic illness places upon the life of the sufferer?  As Joseph Campbell said “We must be willing to let go of the life we have planned, so as to have the life that is waiting for us”.  So, does keeping hold onto hope of some kind of cure, stops us from living the life that we may have not planned, but our new reality?

Do I go in hunt for a cure for the dizziness, which may not even be out there? Or do I simply learn to live and accept the dizziness as a constant part of my life.  It is very hard to accept that this dizziness may never go, and honestly it has really knocked my confidence on going out, but more importantly on going on our cruise in May.  If the dizziness is this severe then, how will I ever be able to enjoy myself?  Will I be able to cope with the dizziness whilst on holiday?  These are the questions that are currently running through my mind.

Simply losing hope but attempting acceptance…

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Need something to make chronic illness suck less? Then check out The Pillow Fort Magazine!

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I love writing, and am always looking for new opportunities to share my writing, other than my blog.  Therefore, I was excited when I heard about a new digital magazine which is aimed for young people suffering with chronic illness to make living with such conditions, not only suck less but help to maintain a positive attitude through the battle of illness.  So, when I read that the editor and creator of the magazine, Lizzy was looking for submissions, I dug out one of my many notebooks and began writing and editing a piece that I could submit to the magazine.  And now, I am happy to announce that the magazine has been published and is ready for you all to read.  I have had an in-depth look at the magazine and I can tell you that it is a fantastic one for anyone battling chronic illness to read.  It is not only beautifully designed, but is filled with amazing photography and inspiring stories from other young women.  To show your support, and help living with chronic illness suck less than you can buy the magazine here

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P.S: If you have read the magazine and my article, would love to hear your thoughts and comments about it!

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My second year blogiversary and looking to the past…

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Yesterday, thanks to the wonders of WordPress, I discovered that it was my second anniversary of my very first blog post entitled ‘An introduction…‘.  After discovering that it was the second anniversary of the start of this blog I contemplated the changes that have happened since the publication of the first post of the blog.  Two years have passed and have now published approximately 225 blog posts since then as well as becoming active on social media, and also becoming involved in projects relating to chronic illness and neurological conditions.  However, on the discovery on my blogiversary it made me consider the past and the changes have occurred since the beginning of writing this blog.

Some of the changes have been good; such as the introduction of a couple of social groups that I now regularly attend; the discovery of a passion for card-making as well as the addition of a personal assistant in my life, which has greatly benefited myself as well as becoming less reliant on my parents.

However, there are also a number of changes that are not so good.  In looking over past blog posts, it made me realise how bad my condition has become.  I suppose, living with illness over a long period, you are not so aware of the changes until you contemplate the past and the reality of your condition as it was then; this could be in the form of looking at past photographs, or re-reading old blog posts or journal entries.  It is no secret, that I have been battling with dizziness since a young child, and although the dizziness was severe two years ago, it really has become so much worse since the start of the blog.

The problems with my legs has also worsened significantly worse since the beginning of ‘My Brain Lesion and Me‘.  At the start of this blogging journey, I had little problems with my legs; although they have always been stiff and had experience discomfort when walking, my mobility was not really affected.  Fast forward two years on, however, and my mobility has significantly worsened, progressing from needing to use a walking stick, to a crutch and now needing to use a wheelchair. And these two years has also seen the introduction of severe trembling in the legs, constant pain and now I have even been experiencing episodes of loss of sensation in them.

However, I am unable to change the past or the present of living with my condition, and it looks like I may have little control on the future.  I am hoping for more information at the end of the month after several more hospital appointments, although I trying not to raise my hopes too high, in case of disappointment.  For now, I will just have to live in the present and attempt to keep positive; to keep writing about my experiences of living with a neurological condition and to live the best life that I possibly can…

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Who knows what the next two years will bring?…

 

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A Year in Review: Living with a neurological condition…

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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 would just like to wish all the reader of my blog – both new and old a very Merry Christmas and hope it brings everything you wish for and much more.  I would also like to wish everyone the most wonderful New Year and hoping 2014 is an amazing year for everyone.

But most of all I hope everyone has a happy and healthy Christmas and New Year celebrations.

Take care

Rhiann xx

 

 

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