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Chronic Illness

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When disabled by severe and debilitating symptoms, we find solace in any way we are able. Not that anyone would know as I continue living inauthentically with chronic illness.  While finding myself incapacitated by such relentlessly debilitating symptoms, I have found comfort and solace in the written word.  And as a result, have been on somewhat of a book-binge. 

One of my favourite reads was a beautiful and life-affirming novel ‘The Authenticity Project.’

‘The Authenticity Project’ by Clare Pooley is a charming novel about six strangers with one universal thing in common. The truth is that each of them is being inauthentic regarding their life; their lives aren’t always what they make them out to be.

‘The Authenticity Project’ by Clare Pooley, a charming, uplifting and life-affirming novel. A perfect Summer read!

It starts with an eccentric artist and septuagenarian, Julian, desperate to confess to the deep loneliness he feels. And so he begins The Authenticity Project. A small green notebook which contains the authentic truth about his life.  He then leaves the journal on a table in Monica’s cafe in a bid to encourage others to share their own.  And as these five other strangers come into contact with the book and share the truth about their lives, it leads to a life-changing world of friendship and genuine connections.  

As I finished the book, continuing to think about the story long after I turned the last page, I started to think about my own life. In doing so, I began to question whether I am authentic and truthful regarding my own life. Or, as like the characters in the book, my life is not always as I make it out to be. Moreover, I questioned whether I was authentic to my reality of living with a long-term neurological disorder.

What does it mean to be authentic?

The definition of authenticity is the quality of being real or true.

Authenticity means coming from a real place within. It is being wholly ourselves, and not an imitation of what we think we should be or told what we should be.

Living Inauthentically With Chronic Illness

The truth is, I am not sure that I am very truthful in regards to my life, specifically my life with FND. It is not an aspect of my everyday life that I am comfortable talking about, and so I choose not to. Even when asked questions regarding my use of a crutch, I answer quickly and swiftly deflect the inquest that inevitably follows. The dreaded question, “How are you?” swiftly brushed off with a simple, “Fine.” Even, when it is far from the actual truth; a reply also used on the worst of days.

"The dreaded question, "How are you?" swiftly brushed off with a simple, "Fine." Even, when it is far from the actual truth; a reply also used on the worst of days." Share on X
In truth, we all have parts of ourselves that scare us, parts of ourselves that we run from because we are too scared to look at or acknowledge them. And as such, we become too afraid to talk about them to others.

In truth, we all have parts of ourselves that scare us, parts of ourselves that we run from because we are too scared to look at or acknowledge them. And as such, we become too afraid to talk about them to others. It becomes more comfortable, therefore, to shut the words about those parts we hate away into the dark recesses of our minds. Shut them away in an attempt to forget the existence of them, or to hide them from the rest of the world. And so we begin living inauthentically with chronic illness.

"In truth, we all have parts of ourselves that scare us, parts of ourselves that we run from because we are too scared to look at or acknowledge them. And as such, we become too afraid to talk about them to others." Share on X

It can even be hard to be authentic in the online world

Sure, it is easier to be more open on social media, which allows you a small degree of anonymity. A medium that enables you to fade into the crowd, to blend in and disguising oneself as being ‘normal’. I find that I am much more eloquent when writing rather than speaking aloud.  

Is it actually easier to be authentic online, or does it make it easier to be the person we want to be rather than the person we are? Photo by Porapak Apichodilok from Pexels.

Despite this, however, I am not much more open online, particularly on social media. Like most people, my timeline is mostly a highlight reel of the rare, good days, uplifting moments and events to cherish, especially on Facebook, and the main reason why my timeline is incredibly sporadic in its updates.  

"Like most people, my timeline is mostly a highlight reel of the rare, good days, uplifting moments and events to cherish, especially on Facebook, and the main reason why my timeline is incredibly sporadic in its updates." Share on X

Inauthentic by editing out the bad days

But what I don’t reveal in the online world I participate in, is the many, many bad days that are caused by the severe, continuous symptoms of FND. Those bad days, which heavily outweigh the good, are erased. It fails to memorialise those days in which the excruciating, debilitating pain overwhelms everything else; the days in which the pain is the victor, and I’m its victim.

"My online world fails to memorialise those days in which the excruciating, debilitating pain overwhelms everything else; the days in which the pain is the victor, and I'm its victim." Share on X

Nor does it mention the days in which my stubborn, uncooperative legs refuse to work, and unable to get out of bed. Neither are the days in which my legs give way, causing a fall down the stairs, or a fall in public commemorated online for the whole world to observe. And neither exists, photographs of the many injuries sustained during such falls and accidents. I hide my condition, and its effect away, and choose instead to hide behind a mask.

Being inauthentic regarding life with chronic illness, we wear a mask and conceal the effects that it has on our physical and mental health
"Nor does it mention the days in which my uncooperative legs refuse to work. Neither are the days in which my legs give way, causing a fall down the stairs, or a fall in public commemorated online for the whole world to observe." Share on X

Perhaps, it is easier to be inauthentic online where we can choose who we want to be instead of the person we are.

"Perhaps, it is easier to be inauthentic online where we can choose who we want to be instead of the person we are." Share on X

The Difficulty of Authenticity for the Chronically Ill

It is easy sharing the happy, carefree moments of our lives. The good parts of our daily lives, comprised of our hobbies, nights out with friends, and holidays, for example. But why is it different when sharing the details of the most painful aspects of our lives, such as living with chronic illness?

Why is there such a stigma around vulnerability and revealing our raw, authentic selves? And why for the chronically ill community is there such awkwardness surrounding our lives with chronic illness?

"For me, I like to pretend that FND does not have me; that it does not define me. But who, am I kidding? FND has me; has me tightly in its grasp.  How can it not, when days and nights are dominated by such relentless symptoms." Share on X

For me, I like to pretend that FND does not have me; that it does not define me. But who, am I kidding? FND has me; has me tightly in its grasp.  How can it not, when days and nights are dominated by such relentless, disabling symptoms. And how can it not when every facet of my life is dependent on that day’s symptoms.  Of course, FND does not wholly define me, but it does to a degree.  As much as I would like to disagree, it is an integral part of my story. 

Authentiity is hard to find amid our struggles with chronic illness

We are often living inauthentically regarding our lives with a chronic illness for fear of being a burden or a fear of being pitied. And also we don’t want to be all about our diagnosis. We want to be seen and acknowledged for the person we are, instead of the person we were. There is a fear that by documenting the bad days, and the accidents that befall us, we will be accused of doing so to gain sympathy or attention.

"We are often living inauthentically regarding our lives with a chronic illness for fear of being a burden or a fear of being pitied. And also we don't want to be all about our diagnosis." Share on X

I cannot tell you the hurt and sorrow that comes when your illness becomes the first topic of conversation.  It feels that others are suggesting that it is the most exciting thing about you, which is never the case.  It can feel that others are reducing to us to a diagnosis; a label. 

The Advantages of Being Authentically Ill

The biggest lesson that one can take from ‘The Authenticity Project’ is the gifts that being authentic can bring.  By being so, it can foster real connections, just like the characters in the book.  And for those living with chronic illness, being vulnerable and authentic regarding the struggles we face, can help reduce the feelings of loneliness and isolation that it often causes. By sharing our truths, we can find others going through the same experiences. And it can remind us that we are not alone and everything we feel as a result is valid and understood.

Being authentic, open and honest about the struggles of living with chronic illness, we are able to foster connections with others, and help reduce feelings of loneliness and isolation that are so often accompanying symptoms.
"For those living with chronic illness, being vulnerable and authentic regarding the struggles we face, can help reduce the feelings of loneliness and isolation that it often causes." Share on X

So perhaps, I need to stop editing my social media and my conversations regarding my life with FND. And to start sharing the bad days and struggles as well as those rare good moments that occur.

I need to incorporate my own ‘Authenticity Project’ to foster real, and authentic connections in my life.

By doing so, perhaps I won’t feel as alone.

In my recent to-be-read pile, two books jumped out at me. One called ‘Normal People‘ by Sally Rooney. The other was ‘Very Nearly Normal‘ by Hannah Sunderland.

As I noticed them, I began to ruminate over the word ‘normal.’

Normal, defined as “conforming to a standard, usual, typical, or expected.”

It is a word that the majority of us aspire to be; to fit in with whichever peer group we wish to be a part of, and accepted. However, for many, it is not a word that they feel applies to them, or which they can relate. 

As a consequence of living with a neurological disorder from a very young age, with strange and unusual symptoms, normal is not something I ever felt I am or a word that resonated with me.

In truth, ‘normal; isn’t a word that I have ever resonated with, particularly after the commencement of the symptoms that would go onto have a significant impact on my life. But even before then, I often felt that I didn’t quite fit in, or that I wasn’t normal. I never seemed to like the same things other kids my age were into and always seemed to be much more introverted than others my age.

"In truth, 'normal; isn't a word that I have ever resonated with, particularly after the commencement of the symptoms that would go onto have a significant impact on my life." Share on X

Perhaps, it was just part of ordinary childhood; I don’t know. But what I do know that these feelings never went away, and becoming a constant theme in my life.

Beginning To Live A Not So Very Normal Life

Even what I thought was normal, such as the trembling and general feeling of weakness in the legs. Having experienced such sensations from such a young age, I naively assumed that everyone lived with such sensations.

But when diagnosed with a chronic illness, it is much akin to finding oneself landed on an alien planet. A strange, new world that we are unable to escape from, unable to return to the normality we knew.  And as we are unable to leave, we begin to build a home and a life on this alien planet. Slowly it becomes our new normal, and a home that no longer feels alien.

"When diagnosed with a chronic illness, it is much akin to finding oneself landed on an alien planet. A strange, new world that we are unable to escape from, unable to return to the normality we knew."   Share on X
Quote from essay

And when living with a chronic illness, the unusual and disabling symptoms that we experience slowly becomes the norm and part of our daily lives. Life with chronic illness becomes the new normal.  Often, it becomes such a part of every day that we can no longer remember life before illness suddenly entered our lives.  Nor can we remember what it was not to endure such unyielding and debilitating symptoms.  

"When living with a chronic illness, the unusual and disabling symptoms that we experience slowly becomes the norm and part of our daily lives. Slowly becoming the new normal." Share on X "It becomes such a part of every day that we can no longer remember life before illness suddenly entered our lives.  Nor can we remember what it was not to endure such unyielding and debilitating symptoms." Share on X

Always Foreseeing The Unnormality Of This Chronic Life

I have always foreseen, and currently envisioning the un-normality of a life living with a chronic illness. It is evident by observing everybody else around me, living life without the difficulties I continually face.  Their existence not blighted by cruel, relentless, and debilitating symptoms, unlike that of mine.  

girl crying while touching glass window
Staring out the window and watching people busily walking and carrying out errands often makes me wonder how they can do so, without feeling the ill effects that I do such as pain, dizziness, or fatigue? For me, it seems so abnormal but in fact the norm for so many.

Watching people, taking long walks, I wonder how they can do so without being met by excruciating sharp pain radiating down their spine and legs. Or being out in vast, open spaces without the feeling of intense dizziness suddenly overwhelming them.  Or being out alone without the worry of legs suddenly giving out from under you, leaving them in a heap on the fall, unable to get up, and left humiliated by a body that is failing them.

"Watching people, taking long walks, I wonder how they can do so without being met by excruciating sharp pain radiating down their spine and legs. Or being out without the feeling of intense dizziness suddenly overwhelming them." Share on X

I find myself plagued by such thoughts as I am unable to remember I time when I didn’t experience such symptoms.  These symptoms have become such a part of my everyday life, that it has become my personal normal. Now, if such symptoms suddenly disappeared, it would feel abnormal.  

Living with a chronic illness, our normal is strange and unnatural to everybody else. And the normal for everyone else, for us, becomes odd and peculiar. On those rare good days, with no or very few symptoms, they can feel strange and bizarre, almost like trying on a wrong size pair of shoes.

"Living with a chronic illness, our normal is strange and unnatural to everybody else. And the normal for everyone else, for us, becomes odd and peculiar." Share on X

An Upbringing of Symptoms and Unusuality

Do you remember the days of childhood? Those blissful happy, carefree days where it felt that you had no worries, or obstacles blocking your way forward.  When experiencing strange and debilitating symptoms from a young age, they had a part in our upbringing alongside our parents and other close family members. 

The promise of care-free childhood usually promises a time free of limitations, a time of freedom, and fitting-in. But when living with symptoms, even when you are unaware of its origins, you become only too aware of the limitations of your body. And the fragility of life.  The promises of childhood snatched away, becoming no stranger to what makes you different.  

It often feels that the symptoms I experience as a result of FND was much a part of my upbringing as anything else. Perhaps the problems I experience with my legs was a big reason for my love of reading as I was not able to enjoy more physically challenging hobbies.

No longer do you fit-in, fixated on the parts of the body that is different from the person standing next to you.  Or all too conscious of what is happening inside of you, that which only you can apperceive.  Once you felt normal, but no longer is it the truth.  

"No longer do you fit-in, fixated on the parts of the body that is different. Or all too conscious of what is happening inside of you, that which only you can apperceive.  Once you felt normal, but no longer is it the truth." Share on X

Illness now claimed you as its reluctant victim, and as such, so too has weirdness; of not being normal.

Panicking Over Every New Twinge; Every Strange New Sensation

I cannot remember the time when every new twinge or unfamiliar sensation did invoke a fresh wave of panic. In my ‘normal’ days, the days before this illness became such a permanent and constant presence in my life, it was easy to brush off a twinge, or unfamiliar sensation as something benign and not a cause for concern.

Now, when met with such circumstances, more often than not, it is welcomed by panic and overwhelming anxiety.  A worry begins that this new twinge or sensation is a sign of another new symptom to add to the already long list. Or a signal from our fragile and broken body that something else is wrong, a new diagnosis for the medical profession to ascertain.  

"A worry begins that this new twinge or sensation is a sign of another new symptom to add to the already long list. Or a signal from our fragile and broken body that something else is wrong." Share on X

It consistently evokes the question of whether such misgivings are a warning of an imminent flare.  Or worse, the start of a deterioration in our conditions.

Accessing? When Amid Chronic Illness The World Can Become Inaccessible

In the land of normality, the world truly is your oyster. It is fully accessible, and the only decision is how to utilise such freedom.

When becoming chronically ill, and limited by the effects of severe and debilitating symptoms, doors begin to slam in your face. The world is slowly becoming inaccessible, and smaller in its choices available to you.

black and white photo of woman staring out of a window
When living with chronic illness and disability, the effects of such can often make the world feel inaccessible to you; your world and life becoming smaller.

The fear of triggering crippling pain makes it impossible to turn the lock and leave the comfort of home. Instead, resigning ourselves to another day of isolation, with no company but that of chronic pain.  And the company of several other loathsome symptoms.

"The fear of triggering crippling pain makes it impossible to turn the lock and leave the comfort of home. Instead, resigning ourselves to another day of isolation, with no company but that of chronic pain." Share on X

The internal battle between you and the door offering freedom can become a daily routine. A face-off with a door may seem ridiculous but when you’ve tumbled down a flight of stairs too many times to count, or not knowing when your legs are next going to give way, or experience dizziness so intense that the world feels unsafe, leaving the house can be terrifying.

"A face-off with a door may seem ridiculous but when you've tumbled down a flight of stairs too many times to count, or not knowing when your legs are next going to give way, leaving the house can be terrifying." Share on X

Public transport becoming inaccessible also, due to the unavailability of seats. Because of severe weakness and disabling pain, standing for an unknown period of time becomes untenable, and as such insurmountable.

Every day you are confronted with places or situations that are inaccessible to you due to the confines of illness and disability. No longer does it feel that you fit into the world around you.

"Every day you are confronted with places or situations that are inaccessible to you due to the confines of illness and disability. No longer does it feel that you fit into the world around you." Share on X

A person with a chronic illness or disability becoming a square peg trying to fit themselves inside a round hole.

Soothing Myself By Changing The Self-Talk

In a normal, ordinary world, I feel anything but, however. I feel different, peculiar, not normal. My ears are often ringing with the sounds of the names directed at me, freak, for example.

The neurological disorder and the symptoms that invariably accompany it sets me apart from everyone else. It’s a truth I have to accept; a part of my life that continually makes me feel different, and abnormal from others.

"FND and the symptoms that invariably accompany it sets me apart from everyone else. It's a truth I have to accept; a part of my life that continually makes me feel different, and abnormal from others." Share on X

But in an attempt to soothe myself from its effects, I often ask myself the question “What is normal?”

Because the truth is normal does not exist; it is subjective. For one person, something may be entirely normal but not so for a different individual.

What is normal is also contingent upon a diverse range of factors such as location or time. What is normal in one part of the world, for example, would be considered strange or abnormal in another. And something deemed to be normal in the Middle Ages, would not be so in today’s modern society.

So no my life consisting of pain, and numerous symptoms due to a neurological disorder may not be normal to others, but it is my normal. And maybe that’s OK because your normal may just sound just as strange to me.

"So no my life consisting of pain, and numerous symptoms due to a neurological disorder may not be normal to others, but it is my normal. And maybe that's OK because your normal may just sound just as strange to me." Share on X

The above post is part of the May Link-Up Party with A Chronic Voice. The aim of it is for bloggers and writers to share their stories and experiences of living with chronic illness through given prompts.

May Link-Up Party with A Chronic Voice

Disclaimer: The team at Reakiro kindly sent me their CBD Oil Peppermint Spray. I received the product for free in exchange for providing an unbiased and truthful review. I received no other compensation. All opinions are mine alone.

In chronic illness, often lies a desperate search; a continual search for relief from debilitating symptoms. We leave appointments with various medications to help find the lasting relief we seek. 

"In chronic illness, often lies a desperate search; a continual search for relief from debilitating symptoms. We leave appointments with various medications to help find the lasting relief we seek." Share on X

But often, instead of relief, there is just disappointment as such crippling symptoms endure. And with medications comes torturous side effects to contend with, as well as those they supposedly treat.  

"But often, instead of relief, there is just disappointment as such crippling symptoms endure. And with medications comes torturous side effects to contend with, as well as those they supposedly treat. " Share on X

A life with chronic illness becomes one of starting one medication and stopping another. And switching to an alternative as it fails to work or becomes ineffective at their job. Is it any wonder, therefore, that many are looking towards alternative medicine to fight the incapacitating symptoms that accompany chronic illness?

In recent times, there has been much interest and speculation of the potential benefit that CBD may have on those living with symptoms often associated with a wide range of chronic illnesses, such as chronic pain, fatigue, insomnia and so on. Image by Julia Teichmann from Pixabay.

One such alternative is that of CBD oil. One which has seen a surge in popularity and interest as a natural source of pain relief. But research has shown that it may ease other symptoms associated with chronic illness.

"There has been a surge in the interest and popularity of CBD as a natural source of pain relief. Research has also shown that it may help ease other symptoms associated with chronic illness." Share on X

What is CBD and How Does It Work? 

CBD is an acronym for cannabidiol, just one of many chemical compounds found in both cannabis and hemp plants, and both of which CBD is derived.  Hemp is the usual choice; however, as cannabis also contains a potent and psychoactive compound known as THC. It is this that gives users a high, and as such can only be sought in places where it is legal to do so. 

There are many different bodily systems which help keep them working as they should and help maintain balance. One such example is the endocannabinoid system (ECS); one thought to regulate a wide range of biological functions such including sleep, mood, immune response and pain to name but a few.  When something is wrong, this system will release the body’s natural cannabinoids, known as endocannabinoids, to help restore balance. 

Image by Julia Teichmann from Pixabay 

And how does CBD factor in this? Well, CBD influences the body to use its endocannabinoids more effectively by activating or inhibiting other compounds in the ECS.  For example, CBD helps stops the body from absorbing anandamide, a cannabinoid associated with regulating pain. If increased levels of anandamide are available, therefore, it may reduce the amount of pain a person experiences.

It may also limit inflammation in the brain and nervous system, benefitting people experiencing pain, insomnia, anxiety and other immune-system responses.  As those with chronic conditions often exhibit these problems, it is no wonder, therefore, why CBD has been gaining much interest within the chronic illness community.  

"Science suggests that CBD help limit inflammation in the brain and nervous system, benefitting people experiencing chronic pain, insomnia, anxiety and other immune-system responses." Share on X

Is CBD Oil Legal?

Most of us are aware that cannabis is a controlled substance under the Misuse of Drugs Act, here in the UK. As a result, there is much confusion whether CBD is even legal, therefore. The Misuse of Drugs Act determines that most cannabinoids are illegal. However, CBD is an exception to this.

In the UK, CBD Oil is legal and relatively well regulated. But the legality of the product must satisfy three conditions for it to be so; Image by Julia Teichmann from Pixabay.

There are three conditions, which all CBD products on the market must adhere to, for it to be legal. The first condition is that the use of the product is medicinal.  Also, the CBD must derive from an industrial hemp strain that has been approved by the EU.  And lastly, that it contains less than 0.2 percent THC and not easily separated from it. 

So Many Decisions To Consider Regarding CBD

The decision of whether or not to try CBD oil to help relieve your symptoms associated with a chronic illness is only one of many. One such choice is what form of CBD to take as each offers different benefits, and has both pros and cons associated with them. 

To determine which form may be best suited for you, you need to consider your needs, type of pain and pain levels, and also how comfortable you feel regarding a particular method of consumption.  Cost may also become a factor when deciding which to use, as price varies between the different products available. 

There are various forms of CBD available – creams and lotions, tinctures (those held under the tongue before swallowing), edible foods and vaping. Share on X

CBD oil can take the form as creams and lotions (topicals), which is supposedly useful for localised pain relief. Tinctures, held under the tongue before swallowing, are relatively fast-acting; absorbed into the bloodstream quickly.  Edible foods containing CBD offer a long-lasting effect but may take some time for its effects to kick in.  Vaping although provides excellent pain relief delivering a higher dose, the inhalation, however, is not so suitable for the lungs. 

Another issue to consider is where to purchase your CBD product of choice. If purchasing online, there can be uncertainty in the quality and concentration of what you are receiving.

Reakiro, however, is a great place to start, taking the stress of researching, and the worry of selecting a high-quality product away.

Who Are Reakiro?

Reakiro is a relatively new brand based in Europe. It is a brand that has full control of their CBD oil production from the purchase of the seeds, to the cultivating and harvesting of the plants. They also have control over the extracting, refining and packaging of their product.

Reakiro is one of the few European manufacturers who can consistently trace the entire product lifecycle from seed to sale. Every decision we make regarding our production is made with the sharpest attention to deal.

Reakiro is a brand that has full control of their CBD oil production from the purchase of the seeds, to the cultivating and harvesting of the plants. They also have control over the extracting, refining and packaging of their product.

The production of CBD involves organic extraction to ensure purity and safeguard against contamination from any chemical solvents. The oil itself is available in a concentration of 3.5, 10 and 15 per cent.

Furthermore, Reakiro CBD Oil is a full spectrum (which means that it contains all the compounds, found naturally occurring in the plant) and also produced from the highest quality industrial hemp cultivated in the EU and tested by independent third-party laboratories.

Reakiro was also listed as one of the ‘Top 25 CBD Online Shops in Europe in 2020‘ by Strain Insider.

What Reakiro Offers

The site has an impressive number of different CBD oil products on their website, from a skincare range to CBD capsules. So, there is undoubtedly something suitable for most needs, and budget. Although, more information regarding the benefits for those in the chronic illness community might have been useful when deciding which product to purchase. 

"Reakiro offers an impressive number of different CBD based products on their website. Undoubtedly there is something suitable for most needs and budgets." Share on X

Furthermore, as Reakiro has full control of the production of its CBD oil, and tested by independent, and therefore, impartial laboratories, you can trust that you are receiving a high-quality product. When getting your order, you will also receive a copy of a laboratory report from a sample of their CBD oil. It shows, therefore, that Reakiro, provides the quality, consistency and transparency that you should expect from a company. It assures you that you can trust them, and have faith in the quality of its products.

"As Reakiro has full control of the production of its CBD oil, and tested by independent, and therefore, impartial laboratories, you can trust that you are receiving a high-quality product." Share on X

Review of the Reakiro CBD Oil Spray (Peppermint 1000mg)

The Reakiro CBD Oil Spray is available in three different flavours – peppermint, as shown above, blood orange and apple crumble. Photo credited to Reakiro.

I chose to review the Peppermint CBD Oil Spray (1000mg). Although been wanting to try CBD oil for some time now, I was wary of using the bottles with the dropper. Due to the neurological condition I live with, I often experience trembling in the hands, leading to clumsiness and a high likelihood of dropping things. As a result, there was the worry that I could use easily drop the bottle, wasting the oil that could help ease the symptoms that affect me significantly.

"A great advantage of the CBD Oil Spray is that it can be easily slipped inside a bag, and be discreetly administered when out of the house if it is needed." Share on X

Furthermore, the spray offers the ease of being discreetly administered when out of the house, if needed.

Receiving The Product

The oil arrived in a sturdy cardboard box, with shredded cardboard inside protecting a cylindrical container. Inside was further padding, protecting the bottle of CBD oil from being damaged in transit. The order tracked, with a signature required upon delivery. It gave me confidence that the oil would reach me safely, especially with the ability to track the progress of the package while in transit.

"The CBD Oil did take some getting used to due to its strong taste and smell. I found that the peppermint flavour did little, however, to mask the grassy taste of the oil." Share on X

Taking the oil did take getting used to, as the smell and taste of it is rather strong. The directions that Reakiro provide is to spray one or two times under the tongue, then hold for one minute before swallowing. Reakiro advises to use its spray twice daily, or as needed. 

A definite advantage of the CBD Oil Spray is that it can easily be put inside a handbag and be administered discreetly if needed when out of the house.

The CBD Oil sprays come in three different flavours – peppermint, blood orange or apple crumble. I chose the peppermint as I find that it is one that helps quell nausea I frequently experience. However, I found that the peppermint did little to mask the strong grassy taste of the CBD oil. And although unpleasant at first, it was not so disagreeable that I was unable to tolerate the taste. After a few days of using the spray, however, I was able to use it daily without having a strong physical reaction to it. It would be interesting to try the other flavours to determine whether they are better at masking the intense flavour.

Did CBD Oil Help With The Symptoms Associated With FND

The symptoms I experience as a result of FND have been particularly severe as late. It has been especially true regarding chronic pain; pain focused to the legs. In regards to my symptoms, I haven’t noticed any significant changes, although it has slightly taken the edge off the intense, debilitating pain.  Although it is not much, it is very much welcome while in the midst of such crippling pain.

"I have noticed any significant changes in regards to my symptoms, but the CBD oil has slightly taken the edge off the intense, debilitating pain. It has also helped me feel calmer and less anxious since starting it." Share on X

I have, however, noticed that I am feeling a lot calmer and less anxious. It. may be that after a prolonged time of use, there might be more relief from the pain and other symptoms.

Those of us, living with chronic illness, are aware that there often is no cure to the conditions that affect us so. However, if we can find things that provide a modicum of relief, then it is worth making it a part of a treatment plan.

"There is often no cure, or effective treatment for our conditions. However, if we can find things, like CBD oil, to provide a modicum of relief, then it is worth making it a part of a treatment plan." Share on X

Haven’t found anything that has helped calm and soothes your symptoms of chronic illness? Why not try CBD a try; you have nothing to lose, and perhaps some relief to gain.

"Haven't found anything that has helped calm and soothes your symptoms of chronic illness? Why not try CBD a try; you have nothing to lose, and perhaps some relief to gain." Share on X
CBD Oil: Can It Help Relieve Chronic Pain?

Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties, whereby bloggers and writers share their stories through given prompts.  It would be remiss of me not to use this month to discuss the ongoing Coronavirus pandemic through the eyes of someone living with a chronic illness— a topic that is affecting everybody, and not just those living with long-term health conditions.

Just like with any start of a brand new year, 2020 promised hope and endless possibilities. However, little did we imagine that instead, it would bring a worldwide pandemic and irrevocably change the way we live our lives.  

Sign reading 'World: The World Is Temporarily Closed'
Who could have imagined at the start of 2020, much of the world would become closed due to a pandemic? Photo by Edwin Hooper on Unsplash

At the time of writing this blog post, much of the world is in lockdown. The UK government even extending ours by at least another three weeks. Our movements have become severely restricted.  Our lives and our worlds becoming increasingly smaller.  Who knew that life could change so dramatically in the blink of an eye?

Strange Time For Many But For The Few, It Feels Like Returning to Normal

Well, those living with chronic illness are all too familiar that life can change so dramatically, so quickly.  Illness, an evil and malevolent force, often enters the lives of its victims, so abruptly and with no warning,  It leaves behind chaos and destruction, and as such, life will never be the same. 

Those living with chronic illness are all too familiar that life can change so dramatically, so quickly. Everyone is experiencing many of the grief and feelings those with chronic illness goes through after diagnosis.
"Illness, an evil and malevolent force, often enters the lives of its victims, so abruptly and with no warning,  It leaves behind chaos and destruction, and as such, life will never be the same." Share on X

Currently, for many, these times seem strange and peculiar. But for those living with chronic illness, it often feels like a returning to normal. For us, our lives and our worlds already feel small, so small that it often feels claustrophobic.  The isolation endured by many at this moment in time is often the norm for those living with chronic illness.

"For us, our lives and our worlds already feel small, so small that it often feels claustrophobic.  The isolation being endured by many is often the norms for those of us who live with chronic illness." Share on X

The world is experiencing a loss of freedom; unable to move freely.  And a loss of the freedom to plan. Collectively we are all experiencing grief, anxiety and overwhelming uncertainty. All of which are hallmarks of what it is to live with a chronic illness.  

Window covered with bars
When living with chronic illness our homes can often feel like a prison; a place where we are confined with debilitating symptoms. During the lockdown, everyone is experiencing the feeling of being imprisoned. Photo by Denny Müller on Unsplash

Everyone is currently experiencing confinement within the same four walls day in and day out, with little reprieve to the outside world. A scenario which is all too familiar for those living with chronic illness as persistent, debilitating symptoms often imprison us behind those same four walls. And where nights and days blur together.  Once, it was due to severe, and disabling symptoms, and now due to COVID-19. 

"Everyone is currently experiencing confinement within the same four walls day in and day out, with little reprieve to the outside world. A scenario which is all too familiar for those living with chronic illness." Share on X

It seems that everyone is experiencing a small slice of what it is to live with our truth. 

Distancing From Thoughts of The Future

Of course, discussions have begun regarding the future, and how and when the current lockdown will end. And although all of us wish to reclaim life as we know it, and return to normality, there is also an element of anxiety, especially for those living with chronic illness. 

Our lives with chronic illness have become currently impacted in ways that are yet to be determined.

Our lives with chronic illness have become impacted in ways that are yet to be determined. The lockdown has meant the cancellation or postponement of essential medical appointments.  Those living with chronic illness now have no access to therapies that help ease the disabling symptoms or which help reduce the number of debilitating flares. So, currently, there is a real fear of an uncontrollable flare or a real setback to progress that we had previously made. 

"Our lives with chronic illness have become currently impacted in ways that are yet to be determined. There is a real fear of an uncontrollable flare or a real setback to progress that we had previously made. Share on X

Before, the lockdown, because of increased falls and deterioration in other symptoms, I lost confidence in going out. Now, with the inability to go out, and regaining that lost confidence, I fear that it will make the situation worse. I fear that my confidence will take a further hit, making going out even harder.  

The Pandemic and Subsequent Lockdown Is Stressing Everybody

Living with chronic illness, or not everybody’s lives and futures are entirely uncertain. And with all this uncertainty, it is reasonable for all of us to be feeling stressed and anxious.

There is much uncertainty regarding the future, and how and when the lockdown will be lifted, and allowing us to return to normality. As such, many are fearful and stressed. Photo by Tonik on Unsplash.
"Living with chronic illness, or not everybody's lives and futures are entirely uncertain. And with all this uncertainty, it is reasonable for all of us to be feeling stressed and anxious." Share on X

Although living with uncertainty isn’t new when living with chronic illness, it does not mean that the pandemic and lockdown is any more tolerable for us to manage.  We’re adding the stress of living with the Coronavirus situation along with the burden of trying to control a chronic health condition. 

Perhaps the Pandemic Will Lead to Better Understanding of The Difficulties Faced By Those Living With Chronic Illness

When diagnosed with chronic illness, there come waves of grief, sadness, anger, loss, fear, and uncertainty as we grapple with the changes that illness induces. And as the world is coming to terms with these changes, everyone is experiencing the same emotions.  We are no longer alone in our grief. 

The discomforts faced every day by those living with chronic illness, are being felt all around the world.

The discomforts faced every day by those living with chronic illness, are being felt all around the world. Ordinarily, there are no feelings of solidarity, and being ‘in this together’ as there is now.  At this moment in time, we are all attempting to navigate and cope with this reality.

"Ordinarily, there are no feelings of solidarity, and being 'in this together' as there is now.  At this moment in time, we are all attempting to navigate and cope with this reality." Share on X

We can only hope that after the end of this pandemic, there will be more understanding and empathy regarding the difficulties faced for those living with chronic illness. So often, people comment on how nice it must be to spend so much time at home.  Now, that they too are experiencing this phenomenon, perhaps they will realise how difficult it can be. 

"We can only hope that after the end of this pandemic, there will be more understanding and empathy regarding the difficulties faced for those living with chronic illness." Share on X

Celebrating Not Missing Out

Like when going through any difficult time, I believe it is vital to see the silver lining.  To cope, therefore, it is crucial to look for the positives in a challenging situation.  

Those who are disabled or chronically ill are enjoying the accessibility that the internet provides by allowing to watch new film releases and exclusive concerts and gigs during this lockdown. Photo by bongkarn thanyakij from Pexels.

Throughout the lockdown, I find it a comfort that as everyone is in the same position, I am no longer missing out on anything. Because when living with a chronic illness, you tend to miss out a lot. Missed parties, celebrations, and lots of cancelled plans are the norm due to persistent, debilitating symptoms. But now, as the lockdown continues, we are all imposition with missing out.

"Throughout the lockdown, I find it a comfort that as everyone is in the same position, I am no longer missing out on anything. As the lockdown continues, we are all imposition with missing out." Share on X

In truth, this lockdown has allowed us to engage in our interests, in ways that hadn’t previously been available. As someone affected by severe and debilitating symptoms, I am unable to attend concerts and gigs. The cinema, with its high ceilings, is somewhere else that I find it challenging to visit. A deep shame, as a person who very much enjoys films. The lockdown, however, has allowed me to watch new releases from home, as cinemas remain closed. I have also enjoyed some of my favourite artists perform from their own homes, from the comfort of mine.

For me, one of the silver linings of the pandemic and the subsequent lockdown has how accessible the world has become.  For those of us living with chronic illness and disability, we hope that it continues even after normality has resumed. 

"One of the silver linings of the pandemic and the subsequent lockdown has how accessible the world has become. We hope that it continues even after normality has resumed." Share on X

What has been your experience of the lockdown and self-isolation? Leave your thoughts below

In Lockdown: A Returning to Normal For Some
April Link-Up Party with A Chronic Voice

Everyone Is Amid A Pandemic

The world has found itself amid a pandemic. Coronavirus, specifically COVID-19, has wreaked havoc on the world, and life is no longer what it once was.  Much of the world is now on lockdown, only able to go out for one of several reasons such as going shopping or exercise, for example.

It feels that everything in our lives is closed, lost to us amid this pandemic. But loss and chronic illness is all to familiar as it often creeps into every facet of our lives. Photo by Tim Mossholder from Pexels

As such, loss has become an intimate component of this new dystopian reality.  The loss of being able to go wherever you want, whenever you want. As the supermarket shelves are empty due to panic buying, there is also a loss of what we would typically eat. And a loss of normality. 

"Loss has become an intimate component of this new dystopian reality. The loss of being able to go wherever you want, whenever you want. The loss of what we would typically eat. The loss of normality." Share on X

The path that we would usually find ourselves on has now become overgrown and unrecognisable. As a result, losing our way and finding ourselves on a completely different road, no longer able to find our way or even know what direction to take next. 

The Pandemic Through The Lens of Chronic Illness

For the chronic illness community, however, it feels that life has not changed. Thanks to the chronic life, we already spend a significant amount of time stuck at home, and as a consequence, we are more isolated than we often realise.

"For the chronic illness community, however, it feels that life has not changed. We already spend a significant amount of time stuck at home, and as a consequence, we are more isolated than we often realise." Share on X

Furthermore, the feeling of loss is all too familiar. Loss often becomes another feature of life with a permanent condition, as much as the symptoms that accompany it. It becomes an old friend, making its presence felt when our body once again redefines itself. And as it does, yet again, we lose something else precious to us.

"Loss becomes an old friend, making its presence felt when our body once again redefines itself. And as it does, yet again, we lose something else precious to us." Share on X

The loss of mobility. The loss of independence. The inability for spontaneity. The loss of friendships. And the loss of control. When living with a chronic illness, the deficits can be infinite and extensive. 

The losses that can incur from living with chronic illness can be infinite and extensive as we lose mobility, independence, friendships and much more. Photo by Lucas Pezeta from Pexels.

With regards to the current pandemic, the only silver lining that we can hold onto that it will not be forever. It too will pass, and eventually, life will return to normal. And everything that was lost will be recouped.

For those like myself, living with a long-standing health condition, however, we are not as lucky. The losses that we accrue as a consequence of them, we cannot reclaim. For us, it will never pass, and life will never suddenly return to normal. The reality for us is that there will always be further loss just around the corner. It continually lurks in the shadows, ready to strike at a moment’s notice, and prepared to steal something else from our lives.

"For us, it will never pass, and life will never suddenly return to normal. The reality for us is that there will always be further loss just around the corner. It continually lurks in the shadows, ready to strike." Share on X

The Continuing Grief of Loss And Chronic Illness

When diagnosed with a chronic illness, you never expect to feel such regular periods of grief. Nor do you foresee to grieve so intensively.  And never can you imagine that the need to grieve happens with considerable frequency.  

When living with a chronic illness, unfortunately, there is no getting better or being cured. Instead, your previous self, your old body has been lost. And with it, emotions such as grief, anger, and shame accompany this new life.  Often, these emotions become as much a part of the illness as the physical symptoms. And they also attend the many changes and losses in and around us as we navigate life in a chronically ill body.

"Often, these emotions become as much a part of the illness as the physical symptoms. And they also attend the many changes and losses in and around us as we navigate life in a chronically ill body." Share on X
The many negative emotions that accompany the changes and loss that comes with chronic illness can become much a part of life with the illness as the physical symptoms.

My experience has taught me that as when new symptoms emerge or existing symptoms worsen with alarming regularity, there is a further loss. As such, the grieving process starts again.

The Losses From Living With FND

I can no longer remember what it is not to experience such strange, severe and relentless sensations throughout my legs – those such as crippling pain and constant and debilitating trembling. I have lost the normality of what it is to live in a healthy and fully functioning body.

"I can no longer remember what it is not to experience such strange, severe and relentless sensations throughout my legs. I have lost the normality of what it is to live in a healthy and fully functioning body." Share on X
With the relentless and debilitating sensations in my legs I have lost the normality of what it is to live in a normal, healthy and fully functioning body. Photo by Lucas Pezeta from Pexels.

For so long now, I have lived with such unpredictability regarding the functioning of my legs.  Of never knowing when my legs will suddenly give way.  Events that and leave me lying in a heap on the floor, unable to get back up. And so, I have lost and must grieve the inability to trust my own body.

When living with a chronic illness, any chronic condition, especially those culminating in mobility problems often results in a loss of independence, of some variety—a loss of freedom and spontaneity.  

The Loss of Freedom and Spontaneity

A loss of being able to spontaneously decide to for a walk when aimlessly sitting around the house; one with there is no final destination in mind but one to see where you will end up.  And no longer will be able to navigate long walks with steep hills, or plenty of steps to climb up and down.  Now, going out requires careful planning and consideration if symptoms suddenly surface, becoming too disabling, and prohibiting us from continuing any further.

No longer able to go out into the world without the worry of how we are going to that final destination. Or the ability to stay out as long as we want, without the fear of pain or fatigue ruining the spontaneous trip.

"We are no longer able to go out into the world without the worry of how we are going to that final destination. Or the ability to stay out as long as we want, without the fear of pain or fatigue ruining the spontaneous trip." Share on X
The ability to go for a spontaneous walk or even a trip is often lost forever to those living with chronic illness when it brings changes to mobility or fatigue. Photo by Noelle Otto from Pexels.

No longer can I remember the last time I felt the house on my own. I do know that it has been years. Since then, I’ve had to rely on my parents. Or my carer to drive me to the places that I wish to visit, or relying on a taxi service to take me where I’ve needed to go.  FND, and its accompanying symptoms robbing me of the freedom and independence of my previous life; the life I lost when illness claimed me as its victim.  Living with a long-term condition can make you feel that you are at the mercy of others.

"FND, and its accompanying symptoms robbing me of the freedom and independence of my previous life; the life I lost when illness claimed me as its victim." Share on X

For The Chronically Ill, This Is Our Normal

I know that I have a lot to be grateful for; I’m still here and have much going for me. But, I cannot help but imagine what life would be like if I had never gotten sick.  At times, I envisage the life I could have led if FND had never entered my life; the potential I could have realised if not so affected by the debilitating symptoms that I have now considered to be my normal. 

"I cannot help but imagine what life would be like if I had never gotten sick.  At times, I envisage the life I could have led if FND had never entered my life; the potential I could have realised." Share on X

Grief and acceptance are not linear, often coming in waves, returning again and again. When experiencing such emotions, it is natural to imagine the what-ifs, or old lives, desperate to return to it—something, which I guess a lot of people are doing as they grieve the losses incurred.

Although, in some ways the losses has not been extensive as those experienced by the chronically ill. Missed holidays and events such as concerts can be rescheduled, for example. Innovative ways to allow people to work from home, or enjoy the latest cinema from the comfort of our sofa are now available to the masses. Technological advances that would have significantly benefited the chronically ill and disabled population, but have previously deemed unnecessary or difficult to implement.

There are published articles of tips on how to stay sane and entertained during the long periods of isolation.  Or tips on how to cope with illness, if it were to happen. Things which the chronically ill and disabled have had to navigate own their own.

It Will End For Many, But Will Still Continue For Those of Us With Chronic Illness

But, this pandemic will end, and life will return to normal. But for those of us living with chronic illness, our lives will continue as the same as is now. For isolation, uncertainty and fear are our norms because this is how we live our lives regularly. And when the current social distancing measures end, there I am sure will be much celebration.  But for me, it will also generate some anxiety.    Before, the pandemic, I had lost self-confidence in going out due to the worsening in my symptoms. And so, there is some anxiety that I will have further problems regarding my confidence when returning to the outside world as I become all too familiar with staying indoors. 

"But, this pandemic will end, and life will return to normal. But for those of us living with chronic illness, our lives will continue as the same as is now. For isolation, uncertainty and fear are our norms." Share on X

I hope that after, the current pandemic ends that the abled body remembers that although they have regained what they had lost, there are many out there who will still experience loss and the grief that accompanies it for the rest of their lives.

Loss In The Time of Chronic Illness
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