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Back in the driving seat…

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As I have been enervated by symptoms, almost leading to the feeling of being trapped in a prison surrounded by invisible tormentors.

However, I was not only trapped inside my own body; a metaphorical prison whilst enduring persistent and unrelenting symptoms but these were also keeping me inside my home due to their severity as well as the fear of the possibility suffering another fall in public.  It was as if the symptoms were acting as prison guards, keeping me imprisoned in my home and the same four walls in which I already spent the majority of my time, to begin with.  I longed for adventure, to experience activity and excitement, like the characters in the books that had become my constant companion as I convalesced in my bedroom.

Adventure. Spontaneity.  Two words that are not synonymous with life with a neurological condition.  Going on an adventure when living with any chronic illness requires planning with almost military precision, and is reliant on a number of factors such as how you are feeling on the day that has been set out for the planned adventure.

Personally, for me, big adventures are also dependent on whether or not my legs are being cooperative on the day, and if they are somewhat weak and the wheelchair is needed then it needs to be a mild dizzy day so the motion sickness does not present itself!  Spontaneity is near possible when living with a chronic illness!

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During a short reprieve from my condition and its accompanying symptoms, I made the decision to make a trip to Hay-on-Wye with my carer on a sunny afternoon in late May.  I say that it was a reprieve, but the symptoms were very much there but the severity of them was not as bad as it had been, so it did feel somewhat of a reprieve but at this point it felt that my condition and its symptoms had been very much in the driving seat dictating everything, from how I was feeling to what I could and could not do and I, was tired.   I was ready to finally take back control and be the one in the driving seat instead of being the passenger on my own ride.

Hay-On-Wye is a small market town located in Powys, West Wales is a place that I had been before, but have desperately wanting to return to since.  It’s most famous as being the town of books with an impressive number of bookshops adorning the streets of the quaint little town.  As a massive bookworm myself, this beautiful place is like a little piece of heaven for me, and I was really excited to make a return to this mecca of literature.

The many wonderful bookshops of Hay-on-Wye
The many wonderful bookshops of Hay-on-Wye

The day itself was beautiful with majestic blue skies with a warm gentle breeze.  It was a beautiful start, the only problem being my extremely trembling legs, as unfortunately the place being somewhat unsuitable for a wheelchair, meant that I had to rely on what felt like incredibly unreliable legs.  But even that wasn’t going to stop me as somehow despite how tough things have been, I finally found my sparkle again.  And despite wobbly legs, several near falls and major fatigue I had a great time in this wonderful little town.  I  was able to browse the many quaint and unique bookshops, treated myself to lunch and just sat down and soaked in the sights and a little vitamin D.  It was a great day; probably the best I’ve experienced for a long while.

Above all, I learned just how much control I allowed my condition to have on my life, yes, some of this was because I had no physical control over this such as the severe weakness and trembling in my legs.  However, I let myself believe that because of the severe symptoms I was not able to do anything at all.  I thought this was my reality, when in fact it was only my perception of the situation.  On the day I discovered determination and strength I never knew I possessed. It felt like pain had my legs trapped in its vice-like grip, but determined to seek out lots of books, I carried on.

Yes, my legs were weak and uncooperative, ready to give way in a blink of an eye, but there are plenty of ways to still an enjoy a day out.  The use of a wheelchair, for example, or by taking regular breaks as we did in Hay (and the perfect excuse to enjoy a hot chocolate!). We may not be able to enjoy a long day out, or a day out like we used to but with appropriate accommodations, we can still enjoy a day out somewhere special.  Are there any perceptions regarding your condition that you think to be a reality?

Admittedly, I perhaps overdone things that day given the fatigue and amount of pain I experienced days after but even that cannot tarnish the memories and the experience of the day.  And above all, it felt brilliant to be back in the car, even if I’m not always in control…

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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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A New Normal…

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For a couple of days this week, imagine my surprise that I awoke to no trembling or even pain in my lower limbs.  None of the severe shakiness that makes me feel that I am balancing on jelly.  No sign of the often debilitating pain that feels as if my legs are being squeezed in a vice, and which makes me wish that I could tear my legs off and discard them as many young children do with their dolls.

For these couple of days, my immediate thoughts after waking and realising that neither of these disabling symptoms had returned were “So that’s what normal feels like!”  I had forgotten how it felt not to experience disabling pain and trembling in the legs.  They had become such a part of my life, that without it, it felt almost strange (although was welcome if it was only for a couple of days!

However that it is not to say I have always experienced these particular troublesome symptoms or to this degree as I haven’t, although I had struggled with them for so long now I am unable to recall when they first started.  That’s the thing with living with a chronic illness; the unusual and disabling symptoms soon become the norm and part of our daily lives.  Life with chronic illness slowly become our new normal.

[Tweet “That’s the thing with chronic illness; the abnormal slowly becomes our new normal.”]

A lot of people have experienced some moment in their lives when it feels that their lives have been divided into a before and after, whether it be through a bereavement, injury, illness or some other life event. A moment in their lives where they have to adapt to a new normal, the lives which they once knew becomes a chapter in someone else’s story.

Image: Google
Image: Google

Perhaps what is most difficult when living with a chronic illness is that we intermittently experience a glimpse into our lives before illness struck and its onset of debilitating symptoms.  Times when our symptoms are mild, or even nonexistent and reminding us of our old normal.

[Tweet “The times when our symptoms are mild, we are briefly reminded what our normal looked like.”]

However, this preview of our ‘before illness’ soon ends and again we’re back to our new reality of pain, fatigue and the other symptoms that make up our conditions.  It’s we have a brief glimpse into an old, familiar room before a door being slammed shut before we had a chance to step inside and familiarise ourselves with our past surroundings. A preview of an old life that although can be seen it is out of our grasp.

When given a chance to experience aspects of our past life, however, what is most surprising is that it no longer feels normal, it feels odd as if that life no longer belongs to us.  When living with chronic illness, the abnormal soon becomes the norm and without us even realising, we forget about our old normal.  When experiencing our old normal, therefore, it feels unnatural and strange, as if that life no longer fits.

The new normal just becomes normal; erasing our past life and who we once were paving the way for life with a long-term condition and who we are now.

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2016: A Year of Hope

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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 film’s 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 on 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.
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I had thought that HOPE is something that I live with every day, 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 a 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 have 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 are 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 have 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?

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