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Chronic Illness and Its Graveyard of Buried Hopes

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“My life is a perfect graveyard of buried hopes.”

– L.M Montgomery, Anne of Green Gables

A Life Raft to Save Us From Drowning In Despair

Whenever illness is at it’s worst; bringing darkness, a well-meaning person will often advise to “never give up hope.”

The promise of hope is a life-vest; the only thing that can save us from sinking into the depths of the abyss below. A light to drown out the darkness of despair and hopelessness that accompany chronic illness.

"The promise of hope can often seem like a light to help drown out the darkness of despair and hopelessness that accompany chronic illness." Share on X

Every morning, new hope is born. The unwavering desire that despite what our head tells us, we will one day get better. Hope that a cure or a more successful treatment is on the horizon. Hope that today will be the day when the medicine prescribed will suddenly work and successful in alleviating suffering. A hope that although the symptoms are a constant companion, their presence will not hinder our plans.

When diagnosed with a chronic illness you would think that hope would cease, but still, we continue to hope

With a diagnosis and the permanency of the chronic illness on the rest of our lives, you would think that hope would become extinct. However, it is not the case. Every day, regardless of the permanency of pain and illness, we hope.

Hope is often the thread that allows us to hold on and survive the worst of days.

"Hope is often the thread that allows us to hold on and survive the worst of days while living with the many symptoms that accompany chronic illness." Share on X

Hope, however, does not always provide the comfort and reassurance that it promises. We know our conditions well enough, to realise the idea of a cure or the promise of remission of our symptoms is improbable. But, the sliver of hope, these thoughts grant becomes intoxicating, and which we ruminate in our minds.

When Hope Only Leaves The Taste of Bitter Disappointment

Hope no longer brings the promise of sunshine and rainbows. Instead, when our hopes and expectations become defeated by illness, we are left with the bitter taste of disappointment. As the number of losses increases and the list of what we can no longer do becomes longer, hope becomes further out of our grasp.

Hope spelled out by scrabble times on a hand covered in dirt
We continue to hope for a cure or something to take away chronic illness, but often it is fruitless, ending in a graveyard of buried hopes

Hope creates incredibly cruel disappointment in the life of someone living with a chronic illness. Hoping that chronic illness will disappear begins a cycle of grief when year after year, its symptoms are still residing in our lives and with no intention of absconding.

"Hope creates incredibly cruel disappointment and a neverending cycle of grief when year after year chronic illness still exists and has no intention of disappearing." Share on X

While plagued with debilitating and unrelenting symptoms; symptoms that have such a profound negative impact on our quality of life sparks the hope that these symptoms will end. A desire for the end of the distressing and merciless symptoms and the expiration date handed to the current flare. But when upon waking and instantly met with the same crippling symptoms, the flame of hope extinguishes once more.

With each doctor’s appointment and the discussion of new medications and treatments, hope begins to bubble that these will what finally works and relieve the disabling pain. But when they don’t, and the search begins again for something that will, hope begins to fade once again.

When the flame of hope is extinguished time and time again, hope begins to dwindle, becoming hopelessness, sometimes even into despair.

"When the flame of hope is extinguished time and time again, hope begins to dwindle, becoming hopelessness, sometimes even into despair." Share on X

Aspirations For Life And The Future

Every one of us has hopes and aspirations, chronic illness or not. Growing up, we have aspirations toward a particular career path, or as we become older, our dreams include winning the lottery and the financial stability that it would provide.

To achieve such hopes and dreams, we prepare, taking steps to make them become a reality. We attend university for a degree to prepare for a career in our dream profession. In regards to winning the lottery, we are well aware that this is very unlikely ever to happen, so we learn to save to plan for the future. In these circumstances, we cannot rely on hope alone for us to accomplish our dreams. We cannot realise our dreams without preparing for reality.

When illness deteriorates, dreams and aspirations for the future can seem as futile as making a wish

When diagnosed with a chronic illness, we are expected to rely on hope to cope with our new reality. Many people tell us not to give up and to have faith. Discussions rarely include how to plan for a future with illness, or ways to prepare for this unexpected new reality. What is needed more than hope is an encouragement to be brave and how to nurture strength and resilience. And more importantly, on effective coping strategies to deal with the many ups and downs of living with a long-term illness.

"What is needed more than hope is an encouragement to be brave and how to nurture strength and resilience. And more importantly, on effective coping strategies to deal with the many ups and downs of living with illness." Share on X

When we accept the presence of chronic illness and the effects that it will likely have, we can make provisions and plans for when the inevitable bad days occur. Hoping that our bodies will suddenly heal only prevents us from cultivating the courage and resilience when healing doesn’t happen or continues to deteriorate.

And Hard To Find In A Life Of Illness and Suffering

When living with constant debilitating symptoms; symptoms that are often disabling hope is hard to find. Instead, we attempt ‘to fake it until we make it.’ We wear a mask and pretend that hope still exists despite the suffering that symptoms provoke. In doing so, we are not being truthful to ourselves or those around us and therefore not being authentic.

Today’s culture demands positivity. Between the memes and messages online and countless self-help books, all depicting positivity as the answer to all our problems. In a world in which authenticity is encouraged and celebrated, it is ironic that the same culture demands we face chronic illness inauthentically hiding behind hope and a faked smile. And in doing so, we feel uncomfortable and feel even more alone than before.

We live in a culture which seems to be obsessed with the notion of positivity, and which prescribe positive thinking as a cure for all our troubles
"In a world in which authenticity is encouraged and celebrated, it is ironic that the same culture demands we face chronic illness inauthentically hiding behind hope and a faked smile." Share on X

Despite all of this, however, doesn’t mean that I am without hope. Instead, I am letting go of hope for things that are not within my control, like my health, for example. Choosing instead to accept the way things are, living in the present moment and finding gratitude despite all the difficulties and adversities caused by illness.

Today my hopes are not extravagant are out of reach; often, I choose to hope that my health remains the same, and not to get any worse. I am hoping for further adventures on cruise ships (very likely to happen after booking one for October 2020).

Hoping for a cure or a miraculous disappearance of this neurological disorder have ended in my graveyard of buried hopes. If one day a cure is found for my condition, then I would very much welcome it, but it wouldn’t be because I hoped for it.

"Hoping for a cure or a miraculous disappearance of symptoms have only ended in my graveyard of buried hopes. If one day a cure is found, then I would very much welcome it, but it wouldn't be because I hoped for it." Share on X
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A Diagnosis Matters…

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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.

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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 specialties, 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.

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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.

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A clinical diagnosis almost acts like a lightsaber 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.

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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.

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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 experienced 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 learned 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.

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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.

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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).

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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.

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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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Struggling with Storms but hoping for a Rainbow…

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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 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).

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And this is most important when living with a long-term health condition.  To live with illness every day is most difficult, and perhaps one of the most challenging aspects of living with a chronic an excellent 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 my 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 improve during the coming year.  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 not experience another decline in the severity of my symptoms.

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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 concerning my 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 have also been very relentless; 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 one option, however, due to the severe dizziness and the constant perceived motion that I am experiencing, it would make me feel even more nauseous.

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 foreseeable 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 tight circle of confidants, I have tried reaching out, not getting an immediate response when I actually in need of someone.  It has often only increased the feelings of depression.  Often thoughts of whether I’m liked within my circle friends usually 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, maybe even considering the social network Meet Up.

Or 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 but still, have hope for the appearance of a bright and beautiful rainbow in the hopefully not so distant future…

RainbowShower

 

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

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Imagine you are a marathon runner, struggling at 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 that would help is to know that the end is in sight and awareness that the pain and fatigue will eventually end.

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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?

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

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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.

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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, our faith waivers.  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?

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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.

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 instills 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.

Anyone reading this who is is living with a chronic illness, know that you still have something to offer and have lots that you are still able to do despite there being things that you 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.

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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 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, and 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.

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