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Falling Down A Vortex…

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Remember, Alice in Wonderland when she fell down the rabbit hole and found herself in a different world?  Well, recently that has felt like my life.  Except, that instead of finding myself in a world filled with the Cheshire Cat, the White Rabbit and the Mad Hatter; I have instead found myself stuck in world of pain, dizziness, depression, falls and loss of feeling in legs.

No, recently it has not been a happy time, and one of the reasons why I haven’t updated the blog for a while.  Writing in the midst of pain and depression has proved too difficult.  I think, i have also not wanted to wrote about the tough times, as I often worry about sounding too negative and self-absorbed.  However, a good friend recently reminded me that a blog about living with chronic illness should document the bad days as well as the more positive posts.  To keep a blog is to be truthful and to be reflective of life; and life for everyone has its ups and downs, especially when you factor a chronic illness into the equation of life.

The depression crept up on me out of the blue.  I suppose, it wasn’t a surprise that the depression has reappeared; it is only natural, when living with severe and debilitating symptoms for so long,  And the symptoms that have been severe lately has not just been the older symptoms such as the dizziness and weakness in the legs, but the newer symptoms have also been problematic.  Before now, I had only experienced short periods where I have lost all sensation in my legs.  Recently, however the periods with no sensation in my legs, have become much longer; lasting all day even.  For me, it feels so strange and unnerving to feel no sensation, and means that walking is much more difficult as you really need to concentrate and look to where my legs are – and walking become a lot slower than normal!

It was due to the loss of sensation which led to a very bad fall down the stairs, the other evening.  Typical, that I has alone for the night when it happened, having no one around to help me.  Luckily, the fall didn’t result in any broken bones or other significant injuries – just a lot of bruises and a cut on my leg.  The only casualty from the fall, was my Kindle, which now is broken and in need of replacing.  This really upset me, probably more than it would have, if not for the depression.  As many of you know, I have a love of reading, and my Kindle was a lifeline for me on the days where I am unable to get out of bed as it allowed me access to books when I am unable to go to my book shelves.

The casualty from my tumble down the stairs...
The casualty from my fall down the stairs…

However, as the loss of feeling in my legs ended; the feeling coming back, it only resulted in pain, and after the fall, pain like I have never experienced before.

The constant battles with the dizziness and depression; and the battle between pain and loss of sensation in my legs have really thrown me down the vortex and transforming the world that I thought I knew.  But, life with chronic illness can be like that; symptoms disappear and replaced with new ones.  It’s a world that keeps changing.  But hopefully, perhaps one day I can fall down a vortex that leads to my very own Wonderland…

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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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Taking the high road…

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Welcome to 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:

Taking the High Road: Write about a time you had to be the bigger person and take the high road.

A while ago, I was having a conversation with somebody online, and they enquired about my life with my health condition.  As I explained the symptoms that I experience, the person responded “Surely, dizziness isn’t that bad to live with.  I’ve experienced it a few times, and it wasn’t that bad…”  At first, I was astounded, and really wasn’t sure how to respond.  Then, I got really angry, and wanted to shout (or in this case type!) “It’s not that bad!  You try living with this constantly and then try telling me it isn’t that bad!”

As much as I wanted to, however, I didn’t and took the high road, and instead responded “Well, I am glad your experience with dizziness wasn’t bad”.  That was the end of the conversation, and instead opted for safer conversations such as books that we both like, and films and so on.  Looking back on the conversation, and after having conversations with other people suffering with chronic illnesses, I realised, that although the person’s comments were not said to be malicious or hurtful, although I found them to be just that; it is very difficult however extremely difficult to imagine  the severity of any symptom that a person suffers with, unless you have experienced it yourself.

Never a judge a person or indeed their illness if you haven't experienced it yourself...
Never a judge a person or indeed their illness if you haven’t experienced it yourself…

Perhaps, when people, whose words we perceive to be hurtful, in relation to our illness, we need to take a step back and instead of shouting and hitting back at their words, we can take instead it take as an opportunity for educating others’ about our particular health conditions, and becoming an advocate for everyone who lives with the condition.  It provides an excellent opportunity to really discuss with others’ what it is like to live with the illness, and to dispel popular myths that exist in the media and wider community.

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Talking Mental Health…

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Welcome to the twentieth-first 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 post reads:

Mental Health Meld: Mental health issues can affect many other conditions.  Write about mental health, emotions, and challenges as they relate to your condition. How does your mental health affect your overall well-being?

Let's talk Mental Health...
Let’s talk Mental Health…

Regarding yesterday’s post about the start of the dizziness in my life, entitled “I still remember..“; it also triggered an anxiety disorder.  Due to the intense dizzy spells that I experienced as a young child and becoming worse as a teenager, it resulted in me worrying about everything; worried about the when the next time the dizziness will occur.  And then when it occurred in places such as a supermarket, or in a particular shop, I would worry that it would happen again and so would avoid that places, in the hopes that I would avoid an attack of the dizziness.  However, this obviously did not stop the dizziness from the occurring; but only resulted in my world from becoming smaller and smaller as I avoided more and more places.  In addition, as a result the dizziness that I kept mentioning to the doctor was put down to the anxiety disorder that I was diagnosed with.  This is the problem with being diagnosed with a mental illness; it is widely acknowledged that mental health patients face difficulty in getting diagnosed and treated for physical illnesses as doctors will often blame their psychiatric diagnosis or the medications that they are taking on the symptoms that patients are experiencing.

A diagnosis of a mental illness can be a roadblock to getting diagnosed with a physical health condition...
A diagnosis of a mental illness can be a roadblock to getting diagnosed with a physical health condition…

In the end, I got help and treatment from the anxiety disorder, and thanks to therapy and graded exercises my world once again started to become larger as I started to visit the places, I once avoided.  The relaxation techniques that I were taught, helped with the anxiety I was experiencing; although the dizziness was still very much there and still as intense.  Now, I still find that anxiety is still an issue; an issue that can affect my mental and physical health,for example when  the dizziness becomes so intense when out, my first instinct is still to panic and become anxious, although the anxiety I find is something that I am able to control, unlike the symptoms relating to my neurological condition, such as the dizziness, and the weakness and trembling in my legs, etc.

It is not only the anxiety, however that can be a problem for my mental and physical health however; depression is also another mental health issue that I have experience of, and can which still be a problem, years even after it first started.  The depression, can still rear its ugly head, when I am experiencing bad flares in my condition.  I often experience the depression, when my symptoms have been really severe for a long period of time; for example recently the dizziness has been so bad for several weeks now, and that has been making me feel down a lot of the time because of it; and because of the depression, the fatigue that I already experience becomes even worse, and that has a knock-on effect on the rest of my symptoms.

Depression can appear during flares in my condition...
Depression can appear during flares in my condition…

That is the thing with mental health conditions when already living with a physical health condition – it is a vicious circle and one of the health conditions become worse, it automatically affects the other.  So, to survive living with a physical health condition, we also need to look after our mental health…

Do you find that the best way to live well with your chronic illness is to also look after your mental health?  I would love to hear your thoughts and comments regarding this issue.  Please comment below…

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“I Still Remember…”

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Welcome to the twentieth 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:

I Still Remember…Free write a post that starts with this line and describe an unforgettable moment in your health journey (for example; a cancer free diagnosis, etc)

I still remember the first dizzy spell that I experienced when I was eight years old.  Although my Mum suspects I may have experienced dizzy spells when I was really young, however the one that I experienced when I was eight, is the one that I really remember experiencing, and started my long journey living with dizziness.

It was December, and my parents and I were browsing a local DIY store in search of new wallpaper for the living room.  I remember the bright, twinkling lights from the Christmas decorations that were in-store, excited for the upcoming holidays.  We were browsing the aisles when out of nowhere, the dizziness came on out of the blue.  It felt as if I were moving in a room that was still and silent, even though I was actually standing still.  I remember being so afraid of falling, that I suddenly grabbed my Mum’s hand and squeezed so tightly as if it were the only thing that was going to stop me from floating away from my parents.  The increased  sensations of the weakness and trembling in my legs; worried that they were going to collapse.   I was so frightened; unaware of what was happening to me and unable to adequately describe the sensations or the experience of what was happening to me. I felt sick and very warm, and just felt an urge to escape the store and go back to the comfort and security of home.

I can still remember going back to the car, sitting down, but still feeling incredibly dizzy, which continued for some time after leaving the large store.  I thought how scary the whole experience was and that i wished so desperately for it to never happen again.  But as we all know, sadly it was not to be the last dizzy spell that I would experience; instead it would be the first of so many.  Dizzy spells that would not only increase in the frequency, but also increase in the severity, until I would live with it constantly as I am now.  Yes, I still remember….

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