A Diagnosis Matters…

Being undiagnosed and having no answers for the peculiar going on inside our bodies is very much like being stuck in a darkened room with no light.

Living without a diagnosis is very much like life in the dark

After every uneventful doctors’ appointments, and every negative test results only moves the light switch further from our grasp, and we remain, still in the dark.  You begin to fear every upcoming appointment for the worry that this meeting will end with the platitudes that you’ve heard many times before, such as “We know there is something wrong, but we just don’t know what.”  Then there is the usual carousel of different doctors from different specialities, some you may have seen before but which only yielded more questions.

In our world of living with chronic illness, the light offers answers to our predicament, in the hope of appropriate treatment and a better future.

Remaining in the dark, however, leaves us still with many unanswered questions, and living with a future of unknowns.

Having a diagnosis means living with many unanswered questions

I read an interesting article that was written after the author was eventually diagnosed with an autoimmune condition.  In the article, she wrote that although she was thankful for finally being diagnosed, she felt however that nothing really changed with regards to her life with chronic illness.

And this is true, of course.

Getting a diagnosis; an answer to the big question that has been hanging over your head for a long time doesn’t really change anything.  The symptoms, the limitations placed upon your life and the other effects that chronic illness has on your body and your life hasn’t really changed.  Life is really the same regardless of whether or not we have a diagnosis.

But often a diagnosis matters.  Some may just say it’s only a label, but when you have been in the dark for so long, it’s more than just a label.  They provide answers.  Validation.  Proof that the doctors that were cynical in their treatment of you, those doctors that told you “it’s all in your head” were wrong, and you in your insistence that something was wrong with your own body was right.

A clinical diagnosis almost acts like a light sabre against those forces that doubted the existence of the symptoms ruling your body and life.

We need to know exactly what we are dealing with.  To have some idea of what the future holds for us instead of living with unknowns and what ifs.  A diagnosis matters.

It can be lonely not having a confirmed diagnosis with many people questioning if you are actually ill.  Getting a diagnosis can lift a weight off your shoulders

A diagnosis can lead to answers.  It is far easier to find information when searching on Google when you have specific keywords to search, such as a diagnosis of MS for example than if searching for the many symptoms you are experiencing in the hopes of coming across the answer for yourself.

It’s also far easier to find others like you, those also battling the same disease as you; to build an online support system with those who understand, swapping tips and stories of your own experiences of living with the condition.  A diagnosis matters.

A diagnosis can lead to treatment options where there were none before.  And it’s these treatment options that can provide hope and a chance at a better quality of life.  A diagnosis as well, of course, can also help with practical matters such as helping to qualify for disability and other types of assistance.  A diagnosis matters.

Having a clinical diagnosis can help with practical considerations such as applying for disability benefits that you might be entitled to

For me, I have been waiting for more than most for a definitive clinical diagnosis for symptoms since young childhood, some possibly since birth.  For years, I have seen so many different specialists, sometimes more than once.  Received the cliched response that the symptoms are due to depression and anxiety and sent on my way with a prescription for medications to treat such ailments but still with no improvement.  Years with no name or explanation for what I was experiencing.  Years of disappointment and hopelessness after test after test came back normal.

Last year I was referred to see a specialist neurological consultant in London and which I attended last month.  I admit I went to the appointment with not much expectation, after many years of disappointment I have learnt the hard way not to get your hopes up as they will inevitably be dashed with a lack of answers, leaving with no diagnosis and an uncertain future.

However, although I came away from this particular appointment with no formal clinical diagnosis, I feel that I have found a small flicker of light in the darkness of suffering.  After the consultant’s senior registrar took a thorough clinical history, gave a detailed neurological examination and poured through my hospital notes, the mystery that is my life and has so far eluded many doctors, he left the room to consult with the top neurologist at the hospital to discuss my case.

Getting some answers means that I can finally see a glimmer of light within the dark tunnel that I have been living in

He concluded that the problems I have experienced, and are still are experiencing are due to a neurological problem of some kind but unsure of the exact cause or even a name for what I was experiencing.  Due to the problems I had shortly after birth, he concluded that it was highly likely the cause of many of my symptoms was from birth and may either be due to damage to the brain during the delivery or even a genetic condition of some description.  Could it be that whatever condition I am suffering was determined before I was even born?  That the development of the symptoms was inevitable like me having blue eyes?

Apart from the unknown neurological condition, the consultant also felt that other problems were going on, diagnosing me with a Functional Neurological Condition, which I have previously written about after a local specialist diagnosed me with FND.  Apparently, it is common for patients exhibiting functional symptoms in conjunction with other illnesses.

Alongside these, I was also diagnosed previously with a vestibular condition; a weakness of the vestibular nerves (those nerves that run from the ear to the brainstem) resulting in dizziness and vertigo.  It is not uncommon for those living with chronic illness to experience more than one condition.  Like jugglers who juggle many balls at once, our bodies often juggle many symptoms from different ailments at once.  Each symptom vying to be the centre of attention.

Having one or more diagnoses means juggling many symptoms, all of which compete for attention

In the meantime, the consultant is going to speak to other specialists from other departments to narrow down the possible suspects that could be the cause of the as yet undiagnosed condition before doing investigations such as genetic testing.

So, although I left this most recent appointment with no definitive answers or a definite diagnosis, however, I did leave with hope.  Hope that we are one step closer to an explanation for symptoms that have been with since a baby.  Validation that although we are not sure of exactly what is wrong with my brain, I have been reassured that there is something wrong, and it’s not ‘all in my head’ (well technically it is, but you know what I mean).

Like a light at a window, I can finally begin to see the light but am just not able to touch it yet.

I’m not at the end of the diagnosis journey, however, but I can finally begin to see the light although unable to touch it just yet.

2016: A Year of Hope

Presents have all been ferociously unwrapped, the christmas decorations have been taken down, and 2015 has been erased to make room for a new start that 2016 promises us.

Just like in the sand, 2015 is being erased to make way for 2016
Just like in the sand, 2015 is being erased to make way for 2016

It’s been a time of reflection, in which we acknowledge the people, events, and the changes that helped to define what the year has meant to us, as well as a time to look forward to the future and all the hopes and possibilities that it may bring.

In my notable absence from blogging, I have been experiencing some of the lowest points in my journey of living with a neurological condition.  The pain and trembling in the legs has been so bad that it has almost overpowered everything else; overpowered in a way that concentrating on anything has been increasingly difficult.  There have been so many moments that I wished, like a faulty computer I could simply press CTRL+ALT+DEL to reboot my troublesome limbs.

From Pinterest
From Pinterest

Consequently most of the Christmas period was spent on the sofa, doing my shopping online and enjoying the overly cheesy and sentimental films that the festive season brings. Of course, all of these festive films are all essentially different versions of the same clichéd premise: chaos ensues into the lives of the films protagonist only for it to eventually remind them what is important in life as they emerge from it a better person.

It's A Wonderful Life is the ultimate Christmas film
It’s A Wonderful Life is the ultimate Christmas film

Furthermore, these Christmas films, also emphasises the importance of hope.  The hope for a happily ever after.  The hope of children that the myth of Father Christmas is real, as well as the hope of presents under the tree on Christmas morning!

The concept of hope and acceptance is important in the chronic illness community and one which I have mentioned in previous posts.  The hope that despite chronic illness and its limitations upon our lives we are still able to find purpose and carve out a successful and fulfilled life.  That is not to say that we all hope for a miraculous recovery or cure from our ails, as this very often the case would be extremely remote, but hope for a better tomorrow despite the circumstances of our lives.

This year I choose hope...
This year I choose hope…

It is strange that before the deterioration of my symptoms within the last few weeks of 2015, I had thought I had reached acceptance of my condition and wore hope like a badge.  However, like items such keys or our mobile phones, hope and acceptance can become mislaid and we are once again navigating the ‘stages of grief’.  It is a continuous cycle of ups and downs in which our journey to acceptance starts again and again.

We are now at that time of year when New Year Resolutions are made and trying to be kept!  Often these resolutions are not meaningful, unattainable and are completely out of reach of our expectations.  But what if we focused on how we would like to feel during the year instead of what we would like to achieve?  By focusing on our ‘core desired feelings’ we are much more likely to achieve our goals (if these goals are consistent with how we want to feel).

Many people are doing this by creating  a ‘one word‘ for the year.  A word to focus upon every day for the 366 days of 2016.  One word that perfectly epitomises who we want to be or how we want to live our lives.  The choice of the word is important as for the year, it will become a compass in life, as it directs your decision-making and guides you through each day.

My word for the year is…HOPE.


I had thought that HOPE is something that I live with everyday, as I live with the neurological condition.  However, after reflecting on this last relapse, and its effect on my emotional health, I realise that like many other people experiencing difficult times, hope is something that I feel is out of reach.

However, during 2016 I would once again like to pick up the torch of hope and run with it for the duration of the year and through the finishing line at the end of this year. Yes, hope is often difficult during the trying days with chronic illness.  But I also think, that hope is an important word for those navigating life with chronic illness, as if one has hope then it can lead to many other things, such as acceptance and peace for example.  William Wordsworth once said ‘not without hope we suffer and mourn’, and I for one agree as in the times I have been without hope during my own personal journey with illness, life was much more difficult; mourning for an old life that was no longer mine to live.

This year, I intend to focus on the positives despite living with a long-term condition.  To appreciate and embrace the small achievements made and accept that these small steps has an impact no matter how insignificant; and furthermore to see these small steps as building blocks to bigger achievements.

I am starting this new positive and more hopeful outlook by creating my own ‘happiness jar’ in which I am going to write all the good and positive things that is going to happen during the next year.   These notes will be then placed in the jar and on New Year’s Eve, only then I can open the jar and marvel at all the wonderful events that has shaped the year.

Image: Pinterest
Image: Pinterest

I would also like to see this year as a blank slate.  To not look at the past failures and bad times that 2015 saw, and get caught up with the things that I did not achieve, but rather see the new year as a fresh start, with endless possibilities and opportunities to explore.

And as I experience bad days due to unrelenting symptoms, I will focus on my one word and remember that it is just a bad day, but it does not have to mean that the entire year will consist of days like them.  I will focus on hope and move forward with life; neurological condition and all,

What is going to be your word for 2016?


Struggling with Storms but hoping for a Rainbow…

Well, today marks the start of a brand new start month.  The start of something new – whether it be a new day, month or year.  It is like a fresh, white piece of paper, in which the past and everything that has come before is forgotten and instead we are allowed to start afresh.  To start our story anew.  It opens up new possibilities and opportunities and allows us the hope for a better today and tomorrow (and beyond).


And this is most important when living with a long-term health condition.  To live with illness everyday is most difficult; and perhaps one of the most difficult aspects of living with a chronic illness, is the unpredictability of it and the unknown of what each new day will bring.  Even with every little sign of illness such as a headache, for example brings the fear of the start of new symptoms or even the possibility of a deterioration in our illness narrative.  Therefore, hope is a vital thread for us to hold onto as it allows the possibility of a life without chronic illness and our lives dictated to by our symptoms.

During the recent weeks since by last blog post, I have been trying to remember these points.

As much as I have been trying to remain positive and to hold onto the invisible thread of ‘hope’, I however have been living with the storm clouds above my head.  Just before the beginning of 2015, I had the hope that this will be a really good year.  Don’t get me wrong, I do not have the irrational belief that I would miraculously be cured during the coming year, but as I had a few good weeks before Christmas, I did have the hope however that it would be the year that my symptoms would not deteriorate and I would experience a decline in the severity of my symptoms.


It would seem that this particular thread of hope has unravelled.

In fact these past few weeks has been the hardest weeks that I have experienced in relation to my chronic illness for a long time.  It often feels that my body is taken a severe battering from all of my symptoms.  The dizziness has been so severe, that even doing the simplest things extremely difficult.  The trembling and weakness in the legs has also been very severe, that as my legs are feeling extremely jelly-like, that recently I have lost all confidence in being able to visit our local town centre and walking around the shops.  Using my wheelchair is obviously one option, however due to the severe dizziness and the constant perceived motion that I am experiencing, it would make me feel even worse.

Everyday of late has felt like an uphill battle from the moment I get up out of bed until I go to bed later that day.  Because of the severity of the dizziness, nausea, weakness as well as the increased levels in fatigue, has meant that I often just want to go to bed and burrow myself under my covers and stay there for the forseeable future.  However, I have not given into my longings and have been pushing myself to still going out, although am finding my trips out have been considerably shorter than previous months.

During my last post, I discussed the feelings of loneliness and isolation that can often accompany chronic illness, and during this recent battle these feelings have unfortunately only increased.  Perhaps one of the main reasons is not letting anyone in my close circle of friends and family know just how bad things have gotten.  Of those who are in my close circle of confidants, I have tried reaching out, not getting an immediate response when I actually in need of someone.  This has often only increased the feelings of depression.  Often thoughts of whether I am liked within my circle friends often follow, stupid I know but perhaps illustrates how difficult things have gotten recently.

I am trying to think of some ways to widen my social life, and perhaps make way for new friends, perhaps even considering the social network Meet Up and setting up a group for those like me who are living with a chronic illness or disability and who are also socially isolated because of it, just a thought in progress at this stage but would love to hear your thoughts and whether anyone has had any success with the site.

At the moment I am dealing with dark storm clouds still have hope of the appearance of a bright and beautiful rainbow in the hopefully not so distant future…



The one important component to survive a life with an invisible illness…

Imagine you are a marathon runner, struggling during the half-way mark.  You are fatigued, suffering from muscle cramps and out of breath.  However, you are determined to complete the marathon and cross the finish line.

So, what spurs you onto the finish the marathon despite the pain and fatigue?  I can imagine that one thought would help is the knowledge that the end is in sight and awareness that the pain and fatigue will eventually end.

Unlike marathon runners, for those living with chronic illness, there is no end in sight of the pain and fatigue that we endure

Life with an invisible chronic condition, however, is in no way alike to the marathon analogy above.  There is no knowledge that pain, fatigue or other symptoms will end when living with a chronic illness.  There is no finish line when living with an invisible chronic illness.  The question, therefore is if we do not know when the pain, fatigue or other symptoms that torments us will end then what help us get through our lives with a chronic illness?

There is no knowledge that pain or fatigue will end when living with a chronic illness (Click to Tweet)

In my opinion, one crucial component for surviving a life with a chronic illness is hope.


One important component for surviving a life with a chronic illness is hope (Click to Tweet)

Hope that despite living with debilitating and life-altering symptoms, that we can still lead a ‘normal’ and happy life.

Hope that the symptoms will eventually ease.  Hope that one day there may be even a cure.

For those living with an invisible chronic illness, the hope that they will be believed and taking seriously as many as of you will have experienced, many are disbelieving of any disabilities or conditions because there are no outward signs of there being anything wrong.

The hope that everything will be OK.

Hope is essential for every person, but perhaps it is more necessary for those battling chronic illnesses as it is vital for pulling us out of the deep trenches of pain, hurt and depression that living with an illness can cause.

Hope motivates us to push forward and to keep thriving through even the difficult times.  In my experience, when my symptoms are particularly severe and perhaps am stuck in bed because I am unable to get out due to weakness, it can help therefore to believe that tomorrow will be a better day.  Maintaining hope during hardships can make it slightly less difficult to bear.

Hope is what motivates us to push forward and keep living through the difficult times (Click to Tweet)

Before the diagnosis of a chronic illness, we have hope for the future and the plans we create because the possibilities that are ahead of us are endless.  However, after a diagnosis of a chronic illness, there is suddenly a huge question mark over our futures and the possibilities we envisioned for ourselves.

The future is uncertain.  Due to the uncertainty of the future, faith is therefore decreased.  How do we maintain hope when the life we had known has suddenly changed?  How do we continue to hope when we experience more bad days than good?

Due to the uncertainty of the future, faith is therefore decreased.  How do we maintain hope when the life we had known has suddenly changed?  How do we continue to hope when we experience more bad days than good?


The truth is that each moment we are in chronic pain or affected by the symptoms associated with our chronic illness, we choose our attitude towards it.  Ergo, we can choose to be negative and resentful towards our situation.  Or we can choose hope and positivity.

For example, I often used to focus on all the ways that my neurological condition limited my life.  Instead of focusing on everything that I am still able to do, I instead focused on the things that I was now unable to do.  This type of cognitive thinking not only can lead to depression and anxiety but can also make you feel inferior to your peers.  Now, I try and focus on everything that I am still able to do, and especially those that give me joy and happiness.  It instils me with hope as well as the reminder that despite the limitations placed upon my life, that I still have things to offer the world.

Everyone reading this who is is living with a chronic illness still has something to offer and has lots that they are still able to do despite there being things that they can no longer to do.

Illness is hard, there is no doubt about it.  From my experience, I know that trying to maintain hope can be extremely difficult as sometimes it can feel that there is nothing to be hopeful for.  But there are things out there that can be healing; things that can make you feel hope still exists even through the darkest of times.


Simple pleasures every day can help alleviate suffering from pain, nausea or fatigue. These little delights do not have to be expensive or grandiose but can be found in the simplest of things, such as watching a favourite comedy, enjoying a cup of your favourite tea, hugging a pet or listening to a favourite album.  Whatever works for you.

Try writing your favourite things down in a notebook; often when living with illness we can forget, and reminding ourselves of the fun activities we enjoy can help bring joy and hope.

To conclude, hope is just one of the components to be able to survive a life with chronic illness.  Hope is the line between living a happy life despite chronic illness or being consumed by the negativity that illness can create.

Allowing illness to consume our lives, such as focusing on the limitations that it places upon us can, therefore, lead us to lose our identity to our conditions. As the spiritual teacher Eckhart Tolle said: “As long as you make an identity for yourself out of pain, you cannot be free of it.”

By choosing hope, however, we can lead a productive life filled with the pleasures that heal us and brings us joy and free from pain.

By choosing hope we can be productive and enjoy the pleasures that heal us and free us from pain (Click to Tweet)

Wordless Wednesday: Hope exists even in darkness…


Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Wordless Wednesday…We all know a picture is worth a 1,000 words.  Post/share a picture that relays a message or story to the viewer


Dear Rhiann (at age 16)…


Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Dear 16-year-old-me….Write a letter to yourself at age 16.  What would you tell yourself?  What would you make your younger self aware of?


This particular post is one which is both extremely personal and difficult to write.  Life for me was extremely difficult for me when I was 16 – I didn’t really have any friends, I was experiencing depression and anxiety as well as living with symptoms of the neurological condition even though it was undiagnosed at that time.   As you can imagine was not a very happy time for me at all.  Now, I look back at that time in my life,  I realise how much I have learnt about myself and life in general since then and furthermore how far I have come since that difficult and dark period in my life.  And, so there are so many lessons that I would share to my 16 year-old self, given the chance.  Here is a letter that I have written to my younger self.

Dear Rhiann,

You may not believe this but this letter is from you but a you from the future. Yes, that is right, as I am writing this I am actually 28 years of age and the year is 2014.  I am actually writing this letter just less than two weeks before going on a cruise around the Mediterranean – yes, that’s right – I (and the future you!) will finally get to experience the beauty and history of Italy; a place which I remember you have always wanted to visit.  So, that is one lesson that I would like to share with you – that although you may not realise it now, and despite how life is difficult for you right now, there are still many good things that are and will happen during our lifetime.  That even what may seem completely impossible right now, because of the way you are feeling and the severity of the dizziness that I know you are experiencing, the impossible is still within your grasp.  The trip may not be easy, and will at times be extremely difficult but I promise it will be so worth it.


I know you are going through a very painful and difficult time in your life, having formally been diagnosed with depression, and having to start taking antidepressants a couple of days before your sweet sixteen.  Writing this, I remember how sick they made me feel for the first couple of weeks, only being able to eat very little before I felt full.  I also remember the incredible loneliness I felt back then, especially during school, having no friends and walking around in a daze, trying to pass the time until lessons started back after lunch.  But I want to reassure you and let you know that things will get better and there is so much more in life for you to enjoy and experience.

I also wanted to share a secret with you – the dizziness that you are experiencing?  It’s not in your head, and you are certainly not imagining it as some doctors have led you to believe.  Because of the rules of letting me write this letter to you, I am not allowed to tell you what is wrong, but there is an explanation for it.  So, please don’t listen when the doctor’s keep telling you that the dizziness is psychological and a result of an anxiety disorder.  Advocate and fight for yourself and your health instead of being timid and compliant like we are, as well as putting doctors on some sort of pedestal because they have had professional training and  “they know what they are talking about”.   One thing that I have learnt through years of navigating the medical field is that doctors are not always right; they are not infallible and they make mistakes.  Listen to that voice inside your head that knows that something is wrong and don’t give up on finding answers to the reason behind the dizziness.  Please keep fighting for answers.   And don’t give up and lose hope that the answers will never come, because they do – it might take some years in the future but they do come.  Trust me.


I cannot say it isn’t going to be easy, or that it’s going to get better and you are going to live a full and normal life, but I believe that you are stronger than you think you are…and you can handle a lot more than you think you can…

And the loneliness you feel – it will go away, you are going to find people who will accept you for who you are, friends that are going to support you in times of need.  I remember at sixteen being teased and ridiculed for who you  are– just remember that no-one has a right to make you feel that you need to apologise for who you are.  Don’t be ashamed to be yourself… You will find people who love you for exactly who you are and make you feel important and valued.  It won’t happen overnight but those people are there waiting to find a wonderful friend like you are.

Before I forget  – the heaviness and stiffness that you feel in your legs?  The feelings that have been with you, since you can remember?  Well, those feelings, they aren’t normal and isn’t something that everyone experiences…Maybe mention this at your next doctor’s appointment.

And good luck for your GCSE exams in a couple of months – not that you need it, you are going to do just great.  You probably won’t believe it, but you will.  Stop doubting yourself.  Next stop will be your A-Levels, and then who know maybe even to University 😉

Take care of yourself and cherish this letter – keep it as a reminder for hope and the knowledge that life will get better and that everything is going to be OK.


Rhiann (aged 28)

Holding on and letting go…

Living with a neurological can be difficult – at times, it can be bearable, with symptoms although always present, they are however manageable.

At other times, however, symptoms are out of control; life feels as if you are on a battlefield –  your condition and its symptoms are at war with your brain and the rest of your body.

During recent times, my experience living with a neurological condition has definitely been the latter – with symptoms becoming out of control, and everything being a struggle.

I think that what has been particularly tricky recently is because all the symptoms that I experience are out of control all at once.  The dizziness has yet again been very severe, which has left me feeling incredibly nauseous a lot of the time.  And not forgetting the severe trembling and pain in the legs, oh and not forgetting the terrible fatigue; hampered by episodes of insomnia.  Of course, it is not pleasant when even one symptom is out of control but is at least a lot more manageable dealing with one such symptom than several symptoms at once.

So, how do we cope when our conditions are out of control?   How do we cope when you feel at war with your own body?

I have learned that often we just need to hold on.  Hold on until it passes.  As I would like to believe all bad times, whether it be because of a neurological condition, another chronic illness, bereavement or even a break-up, passes with time; just as clouds pass over to reveal bright, beautiful sunshine.  I choose to hold on to hope – the hope that it will pass.

Choose Hope! My lovely badge from the wonderful Itty Bitty Book Company

But just as much as we need to hold on – hold on to the hope that it will get better; those symptoms will improve given time, we also need to let go.  To let go everything that we cannot change.  As much as I realise that we should let go of the worry and sadness of things we cannot control; I understand that it is often easier said than done.  I admit that I find it difficult at times, and find myself getting upset of what I cannot do or find challenging as a result of the neurological condition.  However, I try my best to keep the negative thoughts to a minimum and attempt to find the silver lining in the particular situation (e.g., not being able to get out of bed).  I mean, who doesn’t love an excuse to have a PJ day and watch films all day?!) and accept that this is my reality.

There are certain aspects of my condition that I cannot control, such as the symptoms and the effects that these symptoms have on my life.  I do have control, however, on how I choose to deal with the condition.  It is not easy, however, especially when the symptoms are very severe. The way that I choose to deal with this illness is through my writing and sharing my experiences with others, volunteering for great causes, reading books, laughing and talking with friends, and watching my favourite films and television programmes.  Those are some of the activities that I do to make me happy and help me forget that I am a person living with a neurological condition as well as distracting myself from the symptoms that haunt my life every day if even it is for a short time.

So, to help me cope with living with a neurological condition, I both hold on and let go!  I hold onto the positives and let go of everything which I cannot control.  How do you cope with the bad times and dealing with a life-long illness? How do you hold on or let go when life is difficult?




Hospitals, results and losing hope…

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…