mondays

Being a Prisoner to Chronic Illness

Having experienced symptoms associated with the neurological condition I live with, I have always felt like I’ve never fitted in anywhere. Like Belle, from ‘Beauty and the Beast’ I have always felt that others’ looked down on me, thinking of me as odd and different, just like the villagers in the classic Disney film.  Both Belle and the Beast are outsiders in the movie, both harbouring feelings of loneliness and it this that I have resonated with over the years and perhaps one of the reasons it remains my all-time favourite film.

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Often, I feel that I don’t fit in with my own family; a jigsaw piece that doesn’t fit in with the puzzle that it was meant for.  Of course, I have had made friends during my thirty years, but just like the seasons, they have come and gone.  I have been bullied by so called friends, or otherwise ostracised by my peers; unable to understand my unusual ‘quirks.

Rejection is something that I have dealt with over the years and the reason why I find it so difficult to trust people.  I am extremely protective of my heart, preferring to keep people at a distance before they hurt me.

It’s difficult living with a neurological condition that affects your perception of the world. For example, some places like those with high ceilings or fluorescent lighting can be difficult for me to cope with, including cinemas and large shopping malls.  Because of this, over the years I have had to decline invitations to such places because they leave me feeling very unwell if I am exposed to such triggers.

It seems that if you decline invitations on several occasions, you become a social pariah and invitations are no longer offered. And that hurts because it’s not that we don’t want to go to trips to the cinema or go shopping with friends, but we are unfortunately limited by symptoms of our health condition.  We desperately want to be included within the goings of our social groups and invited to events even if we aren’t always able to attend.

pexels-photo-226634I am limited so much by my condition; the dizziness that can be so disabling that it leaves me disorientated and confused, and the trembling in the legs so severe that I have no idea when they are going to give away that I am unable to go out without somebody else with me.  And as I usually only go out with either my parents or my carer, it can make meeting new people extremely challenging. As such, the majority of my time is spent at home; confined by the same four walls every day, often by myself or surrounded by the same faces.  Spontaneity is near impossible and so impromptu trips to somewhere that takes my fancy is inconceivable as a captor to chronic illness.

pexels-photo-102159Living with a chronic illness can often feel like being trapped in prison, from which there is no escape.  Trapped inside of our own bodies.  Trapped within our surroundings, held hostage by our symptoms.  It can often feel that they are in control of our lives; that we answer to them regarding what we do during the long days living with them.

Chronic illness often shrinks our entire worlds.  And not just our physical surroundings, but can affect our social lives.  For me, this neurological condition has shrunk my whole existence; my whole world is now so small that I could live on the smallest island and still have space to widen the world in which I live.

IMG_20170214_115718_427.jpgI have recently read ‘Happy’ by the talented Fearne Cotton; a book that she was written to help readers let go of the idea of perfection and to instead embrace and enjoy the small, everyday joys in life.  In one of the chapters, Fearne discusses the concept of ‘gangs’ or ‘packs.’  Groups in which we feel we belong, as well as those friends who we can call upon during turbulent times.  Reading this chapter, made me realise how isolated I have become due to chronic illness.  How I have very few people in my life who I can trust and rely on, and how I have very few friends that I can go out with and have a chat over coffee and cake.

I have made friends who also live with chronic illness through Twitter or even through writing this blog, and although these relationships have become meaningful, the distance between us irks me.  If only, they lived closer, to allow us to have a relationship beyond a computer and telephone.

I have no clue on how to overcome this isolation and escape from this prison that chronic illness has forced me into and how to meet new people when these symptoms restrict my life so.  How I want to break free from this darkness and see the light and freedom that life has to offer.

Do feel like a prisoner due to your condition?  How do you cope with this?

Walking Through Life with Shaking Legs…

Recently I have been reading many blogs written by others who also live with chronic illness.  In some of these posts, chronically ill bloggers have been sharing their stories of living with their worst symptoms, and as a result I thought that I would share my own personal story of life with trembling legs caused by a neurological condition.

If someone had asked me a few years ago what was my worst symptom then I definitely would have replied with “the constant and unrelenting dizziness.”  The dizziness leaves me with the feeling that my entire perception of the world was off-balance, and at other times my world was spinning around me, leaving me feeling disoriented and sick.  The dizziness can be so bad that when I am out in the big and open world, I feel unsafe and vulnerable as well as the feelings of unsteadiness that I need somebody with me to hold onto due to the fear of falling over.

Now however I would have to admit that the trembling in the legs has become my most troublesome symptom.  Like the dizziness, the trembling is constant, unrelenting and has become life-altering.  The severity of it does vary from day-to-day, sometimes minute by minute.  Life has become increasingly unpredictable.

This morning, I woke up at around 8.30.  Although I was awake, when I attempted to get out of bed, I was not able to because the trembling was so severe that I was incapable to stand or even walk and therefore had to remain in bed until the trembling subsided.  It did after half an hour or so, and was able to get up and start the day ahead.  This is unfortunately not uncommon and recently it has become an increasingly familiar part of my morning routine; a rest from my broken body even before rising from bed.  It doesn’t just affect me in the mornings, however, suddenly finding my legs being uncooperative and too weak to do their job can happen at any time of the day.  Many times I have found myself abruptly crashing to the floor as the shakiness won the battle, leaving my legs giving way.

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Of course, as someone living with a chronic illness, the trembling of the legs is not the only symptom that I have to contend with – of course, the dizziness is still a constant feature in my life and am also dealing with chronic pain which at times is excruciating.  So what makes the trembling my worst symptom?

It’s because that out of all my symptoms the trembling is the symptom that I have no treatment for, and therefore no respite from the unrelenting shakiness of my legs.  Even though the dizziness is constant, I do have periods of breaks from the severe bouts, and when the volume is turned down on it, then I am able to find ways to distract myself from the feeling of the earth being tilted on its axis.

It’s the same with the neuropathic pain caused by my neurological condition.  Yes, for the most part the pain feels like hell, but there are some small periods of time when the pain is bearable and am able to tolerate living side by side with it.  In addition, the dizziness and neuropathic pain can be treated with medications, although they seem to be merely a band-aid which can easily be ripped off instead of a cure.  But at least there is some comfort in knowing there is a treatment plan for these symptoms; for the trembling however there does not seem to be anything to treat this particular symptom and not even distraction techniques help to take my mind off the sensation.

The trembling, dizziness, pain and the other symptoms that make up the neurological condition I live with does get me down, but through all the trials and tribulations that they cause I try to focus on all of the positives in my life.  Such as the amazing support that my friends and family show me everyday.  Life with chronic illness can be messy and difficult, but I choose to believe that there are still plenty of silver linings to be found.

So, tell me what is the worst symptom that you live with?

Feel free to comment below!

 

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Goodbye to a friend…

Today I am sitting here alone in an empty and quiet house.  And why is that?  Well, sadly just over two weeks ago we had to make the hard decision to put our beloved dog Honey to sleep.

The last picture of Honey taken days before her death
The last picture of Honey taken days before her death

It was a comfort to know that we made the decision that it was in her best interests, as well as taking the pain that she must have been enduring in the final weeks of her life.  However, that does not take away the immense pain of losing a beloved pet, as she was such a big part of our family.  The loss is great, and the loss is even more evident as I am sitting alone in the house whilst experiencing unrelenting symptoms.  Honey was a great source of comfort and companionship on my worst days, especially those that were spent whilst devoid of any human companionship.  Although, if something such as fall were to happen, Honey would obviously be unable to phone or raise the alarm but just the presence of her was a comfort; during the worst falls that I have had over the years, Honey would always come to my aid, well with a quick sniff and lick to ensure that I wasn’t badly hurt before lying down by my side until one of her other humans came home.  On the days where it was just me and Honey and I was unable to get out of bed because of weak and trembling legs, Honey would regularly run upstairs to check on me before settling on her favourite seat back downstairs.  Other times, I would awaken from a nap to find Honey laying on the carpet beside my bed.

Now Honey is no longer with us, and its first time since her passing when I have both been on my own and experiencing one of my worst days and I am feeling much less secure and safe.  I feel like a small child whose security blanket has been snatched from their arms.  Without the dog around to comfort and protect me (yes, every little noise when left alone was seen as a threat to me and would be met with a lot of barking!) it has made this particularly bad day feel that much worse and feel a lot longer than the seven hours I would have spent alone.

For those like me, living with a chronic illness, pets can be a very important presence in our lives.  This is especially considering most of our time is spent in the house, often on our own as those we live with go off to school or work, and we are left in the company of a beloved pet such as a dog.  They help to ease our loneliness that we often feel when living with a long-term health condition, and shines a bright light during the darkest of days living with persistent symptoms.  Honey made me laugh so much, even on the days when it seemed I had nothing to laugh about, but she would only have to look at me with her big, chocolate-brown eyes, or do something funny and it would a big smile on my face.

Honey with a potato in her mouth!
Honey with a potato in her mouth!

Yes, they provide companionship and support, but also they become a substitute for friends in a way, our close allies to attempt to live a full and happy life despite chronic illness.  Our beloved pets, give us their unconditional love and support, and the fact that we live with unpredictable and often severe symptoms does not bother them in the slightest, in fact they often show us more love and affection because we do as they can sense that not all is well with us, and they only want to make us feel better in any way they can.  This has been only been my experience of living with a dog for the fourteen years we had with Honey.  Dogs in particular are incredibly non-judgemental, not caring what we look like or why we have cancelled on plans, unlike a lot of humans that we come across during our everyday lives.

There are an incredible amount of studies that have shown the many health benefits of owning a pet.  For example, it has been shown that pets can lower blood pressure, lessen anxiety and boost immunity as well as increasing exercise for those with dogs when taking them for their exercise!   There are also the social benefits to help kerb loneliness and isolation, such as the ability to meet new people whilst taking a dog for a walk for example.  And yes, I agree that there are numerous health and social benefits to owning a pet, but for those living with chronic illness and/or disabilities they can enrich our lives in so many other ways.

Thank you Honey for always being there during my times in need, and for constantly being a source of comfort and companionship.  Thank you for making life brighter when illness threatened to block out the light,

We will never forget you.

Sleep tight, old friend.

My beautiful dog Honey who provides comfort, laughs, cuddles and kisses during times of illness and being bed-ridden!

 

 

 

 

 

 

 

 

 

RIP Honey (2001-2016)

Back in the driving seat…

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 is 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 learnt 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 sought 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 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…

 

Diagnosis is not the end of the story…

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, 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 too 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 sceptical 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 learnt that even after getting a label, diagnosis is not the end of the story…

 

Experiencing Instead of Wishing of Better Days…

Around two weeks, I made pre-arranged plans with my personal assistant to go to the cinema.

On the morning of the day of the arranged trip, I found that the symptoms that plague my everyday life were dialled up to the maximum volume on my personal symptom-o-metre.  On these days, I would usually cancel such plans and make the decision to go somewhere safe and familiar – surroundings where I feel comfortable no matter how bad I am feeling, and which are just as comforting as my own home.

Symptom-o-meter!! From mild angelic experience to severe, devil-like experience of them!
Symptom-o-meter!! From mild angelic experience to severe, devil-like experience of them!

On this day however, I made the decision to make the journey to the retail park, which our regular cinema is attached, and see how the day was going to pan out.  I made the decision, not to make plans, but instead, if I made it to the cinema, than great, however even if I wasn’t well enough to attend, I still had a lovely day away from home, browsing stores and boutiques and indulging myself with a special lunch.

The cinema, as expected did not happen thanks to the unrelenting symptoms that was severely afflicting me, particularly the trembling in my legs that did not allow me to walk around the entire retail complex.

At first, I was thoroughly disappointed at myself and the condition with which I live for wrecking my plans in the overly critical way that I often am in regards to myself.  Although, at the time I felt that I lost the battle to my neurological condition, I have come to realise however that this is not the case.  I may not have made it to the cinema, but I did still manage to push through the severe and unrelenting symptoms that I was experiencing and go to a place that can often make me feel uncomfortable due to the size of the place which can often worsen the dizziness that is part of my chronic illness package.

Perhaps by winning certain battles in our lives with chronic illness we can find ways around certain problems to win the battle another time
Perhaps by winning certain battles in our lives with chronic illness we can find ways around certain problems to win the battle another time

Chronic illness often wins many battles in our lives; however, it does not win all of the battles.  There are many battles that we win; many times we prize the triumph away from the hands of chronic illness and are victorious over defeat.

Think about the last very bad day you had due to chronic illness…

  • Did you still manage to get out of bed?
  •  Go for a shower?
  • Do small chores around the house?

If yes, then congratulations, you triumphed over your illness.  It’s a small victory, but a victory nonetheless.  We need to celebrate and appreciate these small accomplishments as just that – victories over our illnesses that already take so much from our lives, and accomplishing such feats can often feel that we are taking back some control that chronic illness can steal away.

That is the partly the reason for choosing to go out when it would have been easier to stay in the confines of the four walls where I feel safe when the symptoms are it’s worse.  I did not want my neurological condition to control my life and dictate how I spend my time.  I want to enjoy life, and not feel that I merely surviving through life as a result of living with a neurological condition. I want to enjoy life and be happy instead of being stuck inside the same four walls with only my symptoms for company and hoping for better days ahead.

Furthermore, the triumphant day out also taught me that I am a lot stronger than I think I am; and that the symptoms do not have to have as much control as I often choose to give them.  That I am able to take risks and go to places that I did not think I could, as Ophelia says Shakespeare’s, Hamlet:

we know what we are, but know not what we may be

We know what our lives are with chronic illness and as an extension who we are because of it.  Perhaps we need to step out of the box that chronic illness imprisons us into to find out what our lives can be like, if and when we choose to take back control that illness removes from our lives.  Who we can be when we refuse to let illness have the main spotlight in our lives.

If we did, who knows where we may end up?

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The Invisible Fight of Illness…

Imagine walking down a busy street.  Look at the faces of the people passing by.  Every one of those people will currently, or at some point in their past, face a battle.  Some of these battles may be visible, detectable to others, eliciting empathy and compassion.  Other battles, however are invisible; concealed from everyone else, like a deep hidden secret.  A battle that is only known by the person carrying the burden of the fight.

Be kind, for everyone you meet is fighting a hard battle...
Be kind, for everyone you meet is fighting a hard battle…

I am one of these people whom are battling an unseen, invisible fight.  If you were to sit next to me on a bus, or train for example, you would never know that I was living with a neurological condition (although you might if I were staggering with my crutch, or on the days where my weak legs confine me to the use of my wheelchair but even then I am met with confused stares silently asking why I am in need of such aids).

The personal fight I face as a result of my neurological condition although may not be visible to others, for me however is very real.  For me it is not invisible; it is my life.  Every step is a struggle, with legs trembling so much that it feels as if they will be buckle, although no one can see.  For others, the world is still, unmoving.  For me, however, the world seems off-balance, as if everything is slightly tilted, and at other times it seems as if there is constant motion.  Everyday I fight against fatigue to do everything that everyone often takes for granted such as being able to go shopping, take a shower or cook a meal for the family.

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“Living with an illness is often a balancing act between surrendering to our symptoms and fighting against them.”

Everyday is a battleground between myself and my body, however, like with any battles in history, there are times I am forced to surrender – such as those days when my legs are so weak, or the dizziness is so severe that I am unable to get out of bed, let alone stand or walk.  Those days I am forced to surrender to my condition and stay confined to my bed.  That’s the thing about living with a chronic illness, it is often a balancing act between surrendering to our symptoms and fighting against them.

It is not just the symptoms that we have to fight.  We also have to fight against the judgements of other people regarding our long-term health conditions.  At the start of our chronic illness journey, we are often met with understanding and compassion, friends and family make allowances for our limitations.  As time passes however, the understanding and compassion dissipates and is replaced with frustration.  Frustration at us still not being well enough to go out and take part in activities we used to before illness took over our lives.  Frustration at the chores still left untouched as illness still will not allow us to attend to them.  My parents, although often extremely supportive and understanding of my condition will sometimes feel embittered at finding certain chores left untouched after coming home from work, not realising that the day has been waived for a day on the sofa as a result of debilitating and unrelenting symptoms.  And they are unaware of this as to look at me, you only see a healthy woman.

It may seem that the neurological condition takes a large amount of space in my life, it however does not own nor control me.  Yes, it may borrow my life at times, restraining me to the four walls of this house I live in, but the condition does nor ever will take my entire life.  There are certain things that I am unable to do because of this condition; certain baggage that it has created, but there are still plenty of other things that I can and have done that I can still do.

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A profound quote from Tangled!

This invisible condition may fight for control for every facet in my personal life.  Now however I have chosen to fight back, and although I have not won control for every area of my life I have chosen to control aspects of my life that I do have control over.  I have chosen to live side by side with my condition instead of merely enduring life with it.

I choose to live rather than simply survive.

Song that is on my self-care playlist
Song that is on my self-care playlist