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Diagnosis is not the end of the story…

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Recently, after another hospital letter landed on the doormat, it was time yet again for a visit to the consultant neurologist, whose care I am under in the attempt to shed some light on the medical mystery that feels has become my life.   The beginning of the appointment was the benign initial chat on how I have been feeling since the last appointment (a really short time to cover a year in just a few minutes!) and the regular neurological examination, including testing of my reflexes, a not so favourite as it always produces the most violent of spasms, increasing the trembling in the legs ten-fold and increases the weakness in them.

After the standard neurological examination was completed and the consultant thoroughly reviewed my extensive notes, which almost resembled the length of a novel and eventually came up with a diagnosis – Functional Neurological Disorder.

For those, who may not have heard of this condition before, a functional neurological disorder is a condition in which a patient such as myself experiences neurological symptoms such as weakness, movement disorders, sensory symptoms or blackouts.  Patients exhibiting signs of a functional neurological disorder, however, shows no signs of structural abnormalities but is rather a problem with how the brain functions.

It is a problem with how the brain is sending or receiving messages.

If we imagine the brain to be a computer, then conditions such as MS or Parkinson’s Disease would be a problem with the hardware, whereas functional neurological condition is a problem with the software.  Just as a computer crashes or becomes extremely slow due to a software bug, neurological symptoms arise when there is an interruption in the messages being sent or received by the brain.

There is much debate on what exactly causes the dysfunction of the nervous system.  Some suggest that there is a psychological component which manifests itself in a physical manner, but is merely a theory to why these symptoms occur.  I suppose that this is one of the most frustrating aspects of being diagnosed with this condition; yes, it’s a label that explains the experience in terms of my physical health, however, there are so many questions that cannot be answered.  Reading the literature on this condition there are words such as possible and probable and no definite answers or explanations for the development of this condition.

As I read more and am left with no real answers to my questions, I often wonder if the acronym of FND should really stand for ‘For No Diagnosis’.   And with no such answers, how can we as patients be confident of the diagnosis?  Is it a merely a label that doctors grasp at when they cannot find a definitive explanation of our symptoms?  In my experience, the consultant almost pulled this diagnosis out of thin air.

Interestingly most of the anecdotes from others diagnosed with Functional Neurological Disorder describe how their symptoms often started out of the blue, like being struck by a bolt of lightning after which realising life will never quite be the same again.  However, this was not the case for me, as what started off as minor symptoms slowly became more and more severe, as well as the introduction of new symptoms which was progressive in the same way as the original symptoms.

And there is the big puzzling picture of the early days of my life when the doctors thought there was something wrong with me after I was born, leading to a brain scan at two days old.  Growing up, I always complained about my pains in my legs which was worrisome to me but this was brushed away with reassurances they were merely growing pains.  Surely, these must be important pieces of the puzzle that surrounds my symptoms?

Sometimes a diagnosis can lead to more questions than answers
Sometimes a diagnosis can lead to more questions than answers

So what now?  Well, once again I have been referred to specialists for vestibular therapy to help with the dizziness and vertigo.  A therapy that I am no stranger to having been through it several times before.  I am not sure how I feel about this, initially, I was reminded of the famous quote by Albert Einstein, “Insanity is doing the same thing over and over again and expecting different results.”    Do the doctors think that now I have a label, therapy will magically work when in the past it had no effect on my symptoms?  But, although I am initially skeptical I will always try my hardest and will try anything for even the smallest of improvement to the debilitating effects of dizziness and vertigo.

I have also been referred to a specialist neurological hospital in London for a second opinion and to see if the consultants there can come up with any answers and more importantly ideas on how to treat or even manage the symptoms that more often than not run the show of my life!

Through my experiences, however, I have learned that even after getting a label, diagnosis is not the end of the story…

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A New Chapter Begins…

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It’s been so long since my last post.  In the time during my absence, a notable change has occurred – the end of one decade of my life and the beginning of another one, yes, since my last post two months ago I have turned 30 years of age!  Of course, the occasion was somewhat low-key, opting for a spa break consisting of being pampered instead of a large party with family and friends which could only exacerbate new feelings of fatigue, and which flashing lights and loud music would be intolerant for the dizziness and vertigo that are already problematic.
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It’s funny that when on the precipice of such a milestone is the reflection, not just on the past thirty years of one’s life but a reflection on future plans and the possibilities that lie ahead for the next thirty years.  Then there is the barrage of questions that people pose on such occasions, such as “How do you feel?” or “What are your plans now?” It’s as if people view these birthday milestones, such as turning 30, 40, 50 as a beginning of a whole new chapter of our lives.  The past finished within the pages of previous chapters and we are reborn as whole new characters in the story of our lives with endless opportunities that await us in the big wide world.
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When living with a neurological condition, or other chronic illnesses, however, the view is very much different…for us, these milestones are not the precipice for change and unfortunately are not reborn with a new future and endless possibilities awaiting us.  Our bodies are still very much broken and the symptoms that tormented us during the previous chapters that are the story of our lives still very much exist.

Pain, fatigue, dizziness amidst the other symptoms that I live with was unaware and didn’t care that it was my thirtieth birthday and they still made their presence felt on a day that was mine.  And even since, my thirtieth birthday the promise of a new beginning and chapter has proved to be unfruitful, and the symptoms have been unrelenting as ever.

This has especially been true regarding the pain and trembling in both of my legs.  Recently, I read a book that described the pain as a universal human experience.  Whether the pain is a physical sensation or through emotional turmoil, pain is something that we will all experience during our lives.

And I totally agree, but although we are all united in the shared experience of pain, isn’t it funny that when we are in the midst of experiencing pain, it feels like an entirely lonely place? This was the case during our recent spa break, when I found myself, in the early hours of my birthday, in excruciating pain while sharing a twin room with my Mum who was sound asleep.

Preparing to start writing a new chapter
Preparing to start writing a new chapter

Trapped in a body where the pain is ravaging my legs, in unfamiliar surroundings and during the early hours of the morning where everything was still and silent,  felt completely alone as if I were the only person alive experiencing pain.  Of course, I am not and visiting social media sites such as Twitter and reading the posts from others emphasises the realisation that I am not alone in the fight against chronic pain and that there is an unwavering amount of support from those who understand and live with pain themselves.

It was not just the pain however that has made me feel lonely and isolated as of late, but also the severe trembling of the legs that has often rendered me unable to venture far from wherever I am at the time.  More time being spent lying on my bed reading or watching TV programmes or films on my iPad.  Even going out, more time is spent sitting in coffee shops enjoying the warm, luxurious taste of hot chocolate while talking with whomever I’m with or spending some time reading.  Anything but traipsing around shops as legs often feel like they are too weak to support my weight.  This has been particularly emphasised by the number of times my legs have collapsed from under me leading to some rather embarrassing falls in public.

The pain and trembling it seems has made my world smaller once again.  Perhaps that is why I have found myself reading more books in recent times, as the stories that I am reading is able to take my mind to new places when my body is limiting to the places that I can physically visit.

In our lives we find that a lot of chapters close and new ones begin, waiting to be written but certain elements within our personal journeys remain, such as living with a neurological condition, chronic illness or disability as an example.  However, that is not to say that they have to dictate our narrative, or that the narrative cannot change. It just means that we need to take over the reins of the journey and find ways to take back our control and new ways to cope with the obstacles that are in our way.  As the esteemed writer, Nora Ephron famously said: “Be the heroine of your life, not the victim.”
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And as I wave goodbye to my twenties and enter a new decade of my life, I hope to become the heroine of my own story, to look forward to the future and the new possibilities and opportunities that lie ahead…

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Reasons For loving Winter

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Winter can be hard for those living with chronic illness and chronic pain. But even despite this, however, there are still many reasons for loving winter.

What Immediately Comes to Mind When You Think of Winter?

When imagining winter, which words or images are conjured up in your mind?

For many, they would answer with images such as the nights drawing in during the early evening. Heavy rain lashing against the windows. The sounds of the howling wind outside and fighting against the constant outbreaks of colds and flu.

This myriad of some of the images synonymous with winter paints a pretty miserable picture. Especially when juxtaposed with images of summer such as the bright, warm sunshine, colourful and vibrant flowers and so on.

"Images synonymous with winters such as heavy rain lashing against windows and the sounds of the howling wind outside paints a pretty miserable picture. Winter is indeed the cruellest and relentless of the seasons." Click To Tweet

Winter is a time to dread. Summer a time where everything feels alive and happy and time of endless possibilities.  Winter is indeed the cruellest and relentless of the seasons.

It is only the start of the autumn and winter seasons, and already, I have heard many people complaining and griping because of the cold, wet weather.

The Unrelenting Horror of Winter When Living With Chronic Pain

For those suffering from chronic pain, winter can be a challenging time. The freezing temperatures can exponentially increase the amount of pain experienced, for example.

"For those suffering from chronic pain, winter can be a challenging time. The freezing temperatures can exponentially increase the amount of pain experienced, for example." Click To Tweet

In my experience of living with spastic paraparesis (causing stiffness and weakness in the legs) the bitter cold weather and the constant downpour of rain increase the level of rigidity and instability that I experience, thereby increasing my pain levels.

During previous years increased levels of pain, stiffness, and weakness has left me reliant on my wheelchair for the majority of the time when out of the house.

Winter weather can often exacerbate symptoms especially pain
Winter weather can often exacerbate symptoms especially pain

There are steps that I, and others living with a chronic illness and chronic pain during the winter months.  These can include wearing thermals underneath warm clothing to lessen the effects of the cold temperatures on our chronic pain.  Hot water bottles, warm blankets, and snuggly pyjamas are also fantastic at helping us keep warm.  These steps can help us with the physical pain associated with our long-term conditions. However, they do not lessen the emotional impact that winter has on our psychological well-being.

"Steps can be undertaken to help with the physical pain associated with our long-term conditions. However, they do not lessen the emotional impact that winter has on our psychological well-being." Click To Tweet

The Emotional Impact of Winter on Emotional Well-Being

Many people experience some form of SAD (Seasonal Affective Disorder) a kind of depression associated with reduced exposure to sunlight.  Light therapy involves sitting in front or beneath a lightbox. As well as more conventional treatments for depression, including cognitive behavioural therapy and sometimes antidepressants can help ease the symptoms of SAD.

Winter can be a miserable time for many...and not a good time for those with chronic illness
Winter can be a miserable time for many and not a good time for those with chronic illness – Pinterest

I have talked about positive psychology before regarding helping cope with living with a long-term health condition.

One example of an exercise within the field of positive psychology is keeping a gratitude journal.

A gratitude journal encourages individuals to write down at least three things that have made them happy on that day.

Research suggests that by doing this, it can change the brain’s thought processes. It can even result in more favourable thinking patterns.  Therefore, to be more positive and happier during the winter months, perhaps we need to remind ourselves of the reasons to love winter.

"To be more positive and happier during the winter months, perhaps we need to remind ourselves of the reasons to love winter." Click To Tweet

Why Should We Start Loving Winter, Then?

So what are some of the reasons we should love winter?

Reasons For Loving Winter: The Opportunity to Stay Indoors Without Judgement or Provocation

The cold and wet weather during the winter months provides the ideal opportunity to stay indoors. One that is the same for most people regardless of whether they live with a chronic illness or not.  When I tell others I want to stay indoors; there is disbelief on their faces during the summer months.

I am barraged with well-meaning encouragement to venture outside, supposedly an apparent cure for all my ills.  In the winter, on the other hand, others do not comment on my love of staying indoors. Let’s face it everybody wants nothing more than to snuggle beneath a blanket and enjoy a box-set binge when the bad weather hits.

"In the winter, others do not comment on my love of staying indoors. Let's face it everybody wants nothing more than to snuggle beneath a blanket and enjoy a box-set binge when the bad weather hits." Click To Tweet

As well as being not judged for spending so much time indoors, I also feel that I am not going to feel envious or that I have missed out on anything fun.  Friends and family are also spending the majority of the time at home, choosing to stay in and binge the new series of TV programmes that tend to start when the weather begins to deteriorate.  Recently some of my favourite television programmes have returned to the Autumn schedule, such as Grey’s Anatomy and Criminal Minds.

Nothing more enjoyable than wrapping up warm during the cold winter weather or sit in front of a fireplace (if able)
Nothing more enjoyable than wrapping up warm during the cold winter weather or sit in front of a fireplace (if able) – Pinterest

Reasons For Loving Winter: Comfort, Blankets and Netflix!

Winter provides us with the perfect excuse to stay indoors and curl up with a blanket and a mug of hot chocolate.  It furthermore provides us with the ideal opportunity to enjoy an exciting book; or watch a film that you might never have otherwise watched via Netflix.  In other words, winter can provide us with the unique opportunity to bask in the enjoyment of being able to appreciate the little things that give us comfort and joy while also protecting ourselves from the atrocious weather.  Whereas summer is all about the fast pace and cramming as much fun in as possible, winter allows us to savour each moment.

A mug of hot chocolate is so comforting during winter - always make time when out shopping!
A mug of hot chocolate is so comforting during winter – always make time when out shopping!
"Winter can provide us with the unique opportunity to bask in the enjoyment of being able to appreciate the little things that give us comfort and joy while also protecting ourselves from the atrocious weather."   Click To Tweet

I also love going to bed during the winter months and getting beneath my delectably thick winter duvet.  For me, this duvet is comforting, especially when feeling the effects of chronic illness.  Our winter wardrobes are also another enjoyable aspect of enjoying the cold and dreary months. To feel snuggly and safe beneath layers of warm layers of clothing such as big thick jumpers, woolly scarves and hats and thick socks when venturing outdoors.

I own a pair of Ugg boots which I continuously wear through the autumn and winter. They are so comfortable and also keep my feet incredibly warm. These boots are among my favourites and which people often comment on when out, which makes me feel good about myself.

My ever so warm and snuggly ugg boots!!
My ever so warm and snuggly ugg boots!!

Reasons For Loving Winter: The Delicious and Comforting Food and Drinks on Offer

A further reason to love winter is the food! Winter food provides comfort during the cold months. Mince pies, apple pies, pumpkin pies and other seasonal treats that appear in the supermarkets. Winter vegetables can be roasted or used as ingredients for bowls of steaming soups or even baked into delectable pies.

"Winter food provides comfort during the cold months. Winter vegetables can be roasted or used as ingredients for bowls of steaming soups or even baked into delectable pies." Click To Tweet

Chilly evenings also provides the perfect pretext to enjoy a steaming mug of hot chocolate topped with whipped cream and marshmallows or sprinkles of cocoa powder. And if the weather is keeping you indoors, there is plenty of time to put everything you have learned from The Great British Bake Off into practice. Assembling a gingerbread house or experimenting with the abundance of seasonal recipes that you have always wanted to try but never found the time.

Reasons For Loving Winter: Halloween, Bonfire Night and Christmas!

Lastly, the most important reason to love the winter season is all the exciting events that occur during this time. Halloween, Bonfire Night and everyone’s favourite Christmas! These events provide excitement and wonder and the opportunity to come together with those whom we may not have seen for some time. It is hard to dislike Bonfire Night, as beautiful, colourful and vibrant lights are seen decorating the night skies.

"Halloween, Bonfire Night and Christmas provides excitement and wonder and the opportunity to come together with those whom we may not have seen for some time." Click To Tweet

Even if we are too unwell to attend a local fireworks display, it does not mean that we have to miss out. We can still enjoy the firework from the comfort of our own homes, which I often do.

Doesn't everything look pretty and magical with fairy lights during the winter months?
Doesn’t everything look pretty and magical with fairy lights during the winter months? – Pinterest

Throughout November and December hangs the air of excitement and wonder as Christmas approaches.  Houses, shops, and town centres illuminated with colourful lights and vibrant decorations which are beautiful and cheery against the dark and dreary winter nights. 

"December hang the air of excitement as Christmas approaches.  Houses, shops, and town centres illuminated with colourful lights and vibrant decorations which are beautiful and cheery against the dark and dreary winter nights."  Click To Tweet

Furthermore, with Christmas also brings a collection of beautiful food, heart-warming and cheerful family films. Television specials, festive events and activities, happy festive music as well as time spent with loved ones exchanging presents.

It is true that Christmas also brings a lot of activities that can deplete the number of limited spoons. Still, in my opinion, it is worth it for the happiness and the formation of happy memories that Christmas brings.

What are your reasons for loving winter?  You can contact me via Twitter using @serenebutterfly or sending me an email at brainlesionandme@gmail.com.  

Or comment below.

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Acceptance: It’s not about giving up but living life despite chronic illness

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In 1969, the Swiss American psychiatrist Elizabeth Kübler-Ross published her groundbreaking book called ‘On Death and Dying’.  In the book, she introduced the now famous ‘Five Stages of Grief’.  Her theory suggested that there are five stages of adjustment after a loss, which are:

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

The theory described the five stages of grief concerning the mourning of a loved one.  However, these five stages have also been used to describe many areas that involve a loss.

These five stages of grief can also apply to a diagnosis of a chronic illness or the onset of a progressive disability.  Mourning the loss of good health, the loss of a future that we may not have as a result of the diagnosis. And for the activities that we once enjoyed but which may be prevented by the symptoms of the chronic illness or disability.

[Tweet “The 5 Stages of Grief can be applicable when diagnosed with a chronic illness…”]

The 5 Stages of Grief
The 5 Stages of Grief

An example of these stages in action can be as follows:

Denial 

We immediately are in denial of the new situation and cannot accept that it is true.  Regarding chronic illness, we may question the doctor and ask whether he is confident that the diagnosis is correct.  A request may be made for further investigations as we cannot accept the diagnosis as fact.  We may also not be open to new medications or treatments suggested as that would mean the condition is real.

Anger

Like many others, anger is a normal feeling when living with chronic illness.  We are angry at the illness itself due to the severe symptoms that it causes; angry at the limitations it places upon our lives; doctors who made the diagnosis as well as those who didn’t believe you. We are often angry at people around us who are still able to do all the things that we are no longer able to do.  Anger is one of the five stages that those living with chronic illness reverts to, especially when symptoms are particularly severe.

[Tweet “Anger is a stage those living with chronic illness reverts to, especially when symptoms are severe.”]

Bargaining 

Although anger stays for a while, we eventually progress to the third stage which is bargaining.  Often, when living with a chronic illness, we become lost in a world of “What if” and “If Only” statements.  We want to return to the life we had before illness, so we attempt to bargain with our bodies.

We promise that we will take all our medications correctly, and keep to a healthy diet in exchange for the condition to disappear.  A promise is made to do anything in exchange for a cure and to be able to return to a normal life.

[Tweet “When living with a chronic illness we become lost in a world of “What If” and “If Only” statements.”]

Depression 

As times passes; we slowly realise that bargaining isn’t working.  As there is no sign of a cure or a return to our old life we begin to lose hope.  Often, we slide into a depression.  The depression isn’t a sign of a mental illness however but a response to the loss of our previous life.  We turn inward and withdraw from life, and get stuck in a fog of sadness, despair and hopelessness.

[Tweet “As there is no sign of a cure or a return to our old life we can slide into depression.”]

Acceptance 

The move into acceptance is a slow and gradual process.  To reiterate it is not a state of being perfectly fine with being chronically ill but is perhaps a state in which we have more good days than bad ones.

However, this is not a single process.  These five stages of grief are linear and one in which we often regress to previous steps.  The need to work through them all over again, especially at times when the condition gets worse.  As we worsen we return to the first stage of denial and we need to work through all the stages just like we did after the initial diagnosis.  As our health deteriorates, we are essentially mourning the loss of another piece of ourselves.

[Tweet “Acceptance is about finally recognising and acknowledging the permanence of chronic illness.”]

The importance of acceptance can be brilliantly summed up by a famous quote by Joseph Campbell:

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This post is about acceptance – to acknowledge the changes in our situation and declining health.  It is not about being completely fine or deliriously happy about the illness or disability.  Acceptance is about finally recognising and acknowledging the permanence and reality of life after diagnosis.

To learn to readjust to our new reality we need to embrace the life we have now.   Acceptance is not about giving up.

[Tweet “Acceptance is not about giving up but to learn to readjust to our new reality.”]

I thought about the ‘Five Stages of Grief’ recently after a day out with my carer.  As my regular readers may be aware, I have had to start using my wheelchair on a much more regular basis, especially when out for hours due to the worsening weakness in my legs.

Last week, my carer commented on how much more confident I seemed since I started using the wheelchair and how I seemed to enjoy days out much more.  A reason for this is because I am in the wheelchair, I am not always on edge that my legs will give way, or on the days when the weakness is severe, I am not waiting for my legs to collapse.

However, as I also live with constant dizziness and regular bouts of vertigo and as a result of the continual movement while in the wheelchair, it was challenging for me to use it.  So why do I seem so much more confident using the wheelchair than sitting down, and enjoying being out much more when it causes such symptoms?

accepting the need of a wheelchair when living with a chronic illness
Accepting the need for the wheelchair has made going out so much easier and more enjoyable

One possibility is that as suggested by the theory discussed, I have finally accepted that I need the wheelchair.  Perhaps, I have finally moved through these five stages and now accepted my new reality.  Before, I became worried not only about the wheelchair’s effect on my vestibular system but also with the judgements of other people.  That however no longer is a concern of mine and happy to be in the wheelchair.

Perhaps, it is much easier to live with a new situation when we have reached acceptance.  We need to embrace the new reality to live life to the fullest despite any limitations that chronic illness has placed upon our lives.

[Tweet “It is easier to live life despite the limitations of living with a chronic illness when we have reached acceptance.”]

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