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Flares: From The Invisible To The Visible
In Chronic Illness

Flares: From The Invisible To The Visible

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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. This June, I have used the prompts to discuss how flares can go from the invisible into the visible.

After a long, arduous night battling intense, crippling pain, I find myself standing in front of a mirror. Doing so, I begin searching; searching for signs left behind by the symptoms that have tortured every facet of my being for so long. Like the most observant crime scene investigator, I meticulously search for evidence discarded by the offender that is chronic illness.

"I begin searching; searching for signs left behind by the symptoms that have tortured every facet of my being for so long. Like the most observant CSI, I meticulously search for evidence left behind by chronic illness." Share on X

Sure, I observe the extremely ashen complexion, and the severely dark circles under the eyes staring back at me. Both easily attributed to yet another sleepless night and not the torture that my body continues to wreak upon me.

The Invisibility of A Flare

But alas, there are none. The effects of the sudden ferocious flare that arose from nowhere have left no visible evidence of the devastation it has left behind. Surprisingly, illness, its accompanying symptoms and all its baggage often remain invisible despite the damage it inflicts upon its victim.  And for the person living with the scourge of a flare, it is bewildering that others can think we look well when continually sieged by debilitating pain.

"The effects of the sudden ferocious flare that arose from nowhere have left no visible evidence of the devastation it has left behind. Surprisingly, illness often remains invisible despite the damage it inflicts upon its victim." Share on X

Flares come and go. And each time that one passes came the hope that it would be the last one. And the desire that never again would I have to utter the words, “This is the worst that I have ever felt in my entire life.” But flares always come back. They would always return, and the hope that had recurred after the flare diminished, disappeared along with it.  Yet again, forced to confront the ever-increasing presence of illness and disability in my day-to-day existence.  Along with this, is the need to accept the increasing lack of functioning as a part of my life.  

"They would always return, and the hope that had recurred after the flare diminished, disappeared along with it.  Yet again, forced to confront the ever-increasing presence of disability in my day-to-day existence." Share on X

The Traumatising Effect of a Flare

Flares, with its spike in symptoms, and the excruciating effects of the increased severity of them is a kind of trauma in itself. The symptoms that accompany chronic illness are invariably unpredictable and intense, but even more so during a flare.  And as such, living through one is both challenging and overwhelming.  

"The symptoms that accompany chronic illness are invariably unpredictable and intense, but even more so during a flare.  And as such, living through one is both challenging and overwhelming." Share on X

Day and after day living through the hell of debilitating pain, and unable to do anything but lie and endure such torture, you begin to feel helpless. You also start to believe that the flare will never end, and instead trapped in this seeming nightmare always.  The unpredictability, intensity, and relentless nature of such a setback can be scary, discouraging, and frustrating.  Its very presence is a stark reminder of the power that chronic illness yields in our lives. And reminding us that we do not always have control over our bodies. 

curled up in a foetal position because of pain
Flares, with its spike in symptoms, and the excruciating effects of the increased severity of them is a kind of trauma in itself.

Even after the flare dissipates, there is a trauma of having to live with new limitations, a result of a further loss of functioning; a byproduct of the prior exacerbation. A loss of identity. A loss of self-confidence. The scars from previous flares, that had removed me from life, and which I had lost so much continue to haunt me. As well as the knowledge that it will inevitably return. And haunted by the gains returned to me after a prolonged flare, only to have them snatched away again.

"The scars from previous flares, that had removed me from life, and which I had lost so much continue to haunt me. As well as the knowledge that it will inevitably return." Share on X

Becoming Disabled: My Body Responding to Frequent Flares

Because of the cycle of flares coming and going, my level of functioning and mobility, in particular, has changed. Steadily, worsening over time. Once, only relating to the label of being chronically ill, the deterioration in functioning added a new label to an ever-changing identity – disabled.  It was now that as a result of the cycle of flares, the invisible slowly became more visible. 

"Because of the cycle of flares coming and going, I have steadily, worsened over time. Once, only relating to the label of chronically ill, the deterioration in functioning added a new label to an ever-changing identity – disabled." Share on X

Flares: From The Invisible To The Visible

Where once I was unable to rely on myself, I was now unable to rely on my body because of the devastatingly debilitating effects of the symptoms that accompany FND. My new life came with a variety of paraphernalia associated with disability.

"Where once I was unable to rely on myself, I was now unable to rely on my body. My new life came with a variety of paraphernalia associated with disability." Share on X

Over time, I needed a variety of assistive walking devices. Different mobility aids for different mobility days; some days, a single cane will suffice in helping me get around. Other days, I find myself needing extra support, which a crutch fails to provide, so a rollator came into my life. And the terrible days, where my legs are being incredibly uncooperative, a wheelchair is needed. Going out, I began to need a disability badge in the case that my legs unexpectedly give way.  

While before my symptoms were invisible when I become more visibly disabled, however, I found it was me that became invisible.

Honouring My New and Ever-Growing Limitations

As the identity of ‘disabled’ made me feel invisible and even more isolated than before, I began to resent it.  I ignored what my body needed and did everything to blend in, to once again feel visible in the world.  The assistive devices that now played a prominent role in my life were left at home, discarded and redundant just as they had made me feel redundant, unable to live life like I once had.

"As the identity of 'disabled' made me feel invisible and even more isolated than before, I began to resent it.  I ignored what my body needed and did everything to blend in, to once again feel visible in the world." Share on X

It, however, only led to more falls as a result of a lack of support and balance such aids provided. All the extra walking needed to get around only resulted in more pain. And after returning home, overwhelming fatigue emerged, left unable to do anything but tolerate it.  I had to learn to accept the inevitability that flares go from the invisible to the visible.  And as such, had to acknowledge my need for such assistive devices. 

Being in a wheelchair usually leaves me feeling more alone and isolated than ever before, which made it harder to accept that I needed to use such assistive devices. Photo by Marcus Aurelius from Pexels.

Honouring the disabled label was a gradual process. Some days, I felt disabled, and days when I didn’t. The tag was an ageing-in sort of thing that took many years of being sick and living with FND.  Disability is a unique lesson in acceptance; by honouring the limitations of my body and embracing the mobility aids that accompany it, I can be happier and be more productive than without them. 

"Disability is a unique lesson in acceptance; by honouring the limitations of my body and embracing the mobility aids that accompany it, I can be happier and be more productive than without them." Share on X

Hoping That The Label Will Become Only A Small Part of My Life

The severe debilitating effects of a flare, and the resulting disability it causes often feel that it plays a significant and prominent role in my life. At times it feels that the diagnosis defines me, and the rest of my life pales into insignificance. Even more so, during a debilitating flare, or on the awful days, which there are many.

I hope for the day when illness and disability becomes only a small part of my life, as often and especially during times of a flare it can feel like the most significant part of life!

So, I began hoping and living for the moments in between. The good times in between flares, the good parts of the day when I’m not in pain.  Or those times where the other symptoms are quiet in the background. And the times when I don’t have to always worry about my health; or concerned when the symptoms will next suddenly appear.

"I began hoping and living for the moments in between. The good times in between flares, the good parts of the day when I'm not in pain, or where the other symptoms are quiet in the background." Share on X

I am hoping that over time, despite the disability that has begun to impact every facet of my life significantly, that it will become just another part of my life. I hope that it will become a small part of my life; even on the bad days.

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Living Inauthentically With Chronic Illness
In Chronic Illness

Living Inauthentically With 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.

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CBD Oil: Can It Help Relieve Chronic Pain?
In Chronic Illness

CBD Oil: Can It Help To Relieve Chronic Pain?

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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?

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Lessons learned from living with chronic illness and chronic pain
In Chronic Illness

34 Things I’ve Learnt in 34 Years

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So, today is the 15th March. Today also marks the thirty-fourth years since I was born. Happy Birthday to me!

Much of my life, I have experienced the symptoms of a neurological disorder. A disorder that has since become a large part of my life. Yes, much of these symptoms were subtle, seemingly benign, quirks brushed off as nothing out of the ordinary.

The strange, trembling sensation in my legs, I’ve experienced for as long as I can remember, and so which I thought was natural, and something everyone experiences.  The crippling pain attributed to growing pains (ironic as I’m only 4″11 and so growth isn’t something that has happened much in my life!).

But even as life with chronic illness and it’s accompanying symptoms has gone on for so long, I never imagined it would become a such a massive part of my life, as it has.  The neurological condition, FND the diagnosis which eventually came after so many years has taken so much from me.  But it has also taught me so many lessons.  And so as I enter my 34th year on this earth, I thought I would share 34 lessons that living with a neurological condition has taught me. 

"As I enter my 34th year on this earth, I thought I would share 34 lessons that living with a neurological condition has taught me."  Share on X

34 Lessons That Illness Has Taught Me In 34 Years

1. You can never know what a person is going through

Living with a neurological condition that is invisible makes you appreciate that not everything is as it initially appears. When an illness is hidden, and the symptoms that are very real to us, but cannot be discerned by others, we can begin to feel judged for looking healthy and normal. Very often, people assume that there is nothing wrong with us because we “don’t look sick.”

"Living with an invisible condition has taught me to look beyond what we see and recognise that every person is fighting their own personal, invisible battles." Share on X

So, living with an invisible condition has taught me to look beyond what we see and recognise that every person is fighting their own personal, invisible battles. It has taught me more about compassion and empathy with others than anything else I have gone through.

2. The people you can count on and who values you

There is nothing like living with a life-long health condition to make you realise who you can count on and the people who truly value you.  When living with a chronic illness, you often find that many people will walk out of your life or begin to ghost you.  Living with FND has therefore weeded out those people who didn’t value me, and who will stick by me no matter what, through thick and thin.  I now know who I can rely on, and who sees me beyond that of a person living with a chronic illness.  And more importantly, who are the people worth having in my life.

3. You know your body better than anyone else, including doctors!

As someone who has lived with symptoms for many years, and subsequently has them dismissed by medical professionals, living with FND has taught me that I know myself and my body better than anyone else. For many years, doctors attributed my symptoms to anxiety and depression. Deep down, I knew that there was something more going on but began doubting myself with the repeated dismissals. So, when the diagnosis came, I felt nothing but relief and validation. It also helped me realise to have more faith and confidence in my concerns regarding my health and body.

4. There are always lessons to be learned even after living with illness for so long

I assumed that after a time, it would become easier to deal with a chronic illness. I believed that after a time, I would learn all the lessons that there is about living with chronic illness, and there would be nothing more to learn. But, I’ve since learned that living with a health condition is a continual learning curve. Some days are better than others. There are days you can cope, and others you don’t.  And times, where your preferred coping techniques work and times where they don’t. And as more symptoms crop up, and more diagnoses appear, there is always much to learn. 

We need support from a compassionate and supportive tribe when in the midst of chronic illness

5. You are not alone

For so many years, especially when the illness left me permanently alone and isolated, I felt like I was the only one who felt the way I did. It often felt that I was the only one to experience these symptoms. But social media helped me to realise that I am not alone and helped me to connect me with so many others going through the same or similar experiences.

"But social media helped me to realise that I am not alone and helped me to connect me with so many others going through the same or similar experiences." Share on X

6. You are stronger than you think

Through living with a neurological disorder, and the many limitations it presents, it has taught me that I can cope with more than I ever thought I could. It has taught me more about resilience and perseverance than anything else.

7. The bad times will eventually pass

It too shall pass. Yes, living with a chronic, incurable illness is much like riding a rollercoaster, with infinite ups and downs. But it has taught me that despite the difficulties of the downs, they eventually pass.

8. Gratitude is so important

There is always something to be grateful for, even on the bad days. On the worst of days, when the pain seems too much to bear, there is light to be found.  And a moment which to be grateful for, and a small win against the darkness of illness.

Happiest Gratitude Journal
Allowing a small moment for gratitude and positivity with the The Happiest Gratitude Journal from The Itty Bitty Book Co: https://ittybittybookco.com/products/the-happiest-gratitude-journal

9. Don’t compare your journey with anyone else’s

Comparison is truly the thief of joy. Yes, many things living with FND stops me from doing or stopped me from achieving certain milestones. But comparing myself to other people, or what I see on social media is not helpful, or makes me feel any better. Chronic illness has taught me that we are all on different journeys, and that is OK.

10. You can’t always control what happens to you, only how you respond to it

Yes, living with a chronic illness and how it affects life is not always in our control, but we can choose to wallow in the misery of the situation or find the positives and make the most of our life with a long-term health condition.

11. The importance of flexibility and going with the flow

When living with a chronic illness, it is hard to be spontaneous. But it can also be hard to make plans when you are unable to know how you are going to feel on any particular day. So you learn to be accommodating to your body, and what it needs.

"It can be hard to make plans when you are unable to know how you are going to feel on any particular day. So you learn to be accommodating to your body, and what it needs." Share on X

12. Acceptance is challenging to find, and even more so to keep

Acceptance is crucial in learning to live well and successfully with a chronic illness.  But time and time again, and especially during the darkest times, I find myself feeling frustrated, angry and disheartened.  I become overwhelmed with the worry and uncertainty of the future. 

14. FOMO is not only a feeling but a way of life

When living with a chronic illness, FOMO becomes not a feeling but a way of life. Living with a long-term health condition, you learn that you will continually miss out on events and social gatherings.

15. But you learn ways to live with it, and finding ways around your new limitations

But it also helps you learn to live life on your terms, and in harmony with your illness. After the symptoms of FND deteriorated and was left unable to cope with large buildings, I thought travel was something I would no longer be able to do. But now I have found a love of cruising.  A way of travelling in a way my condition allows and is agreeable with, at least somewhat! 

16. There is no shame in asking for help

As much as we all like to be as independent as possible, living with a chronic illness often reminds you that there are times when you are not. And when such conditions are invisible, it is not always apparent that such help is needed. So, we need to be willing to let go of our pride and stubbornness and ask for assistance when symptoms become debilitating. As time goes on, you learn that it is OK to ask for help and require it, at times. Illness, or not we all need help and assistance at times.

17. The importance of self-care

Living with persistent and debilitating symptoms has taught me the importance of listening to your body, and giving it what it needs. Self-care is vital for everyone, but especially for those living with a chronic illness. It is also something that goes beyond luxurious spa days, for expensive pampering sessions. Just as necessary is nourishing your body with nutrients, getting enough sleep, or using a favourite moisturiser.

18. How to be patient

When you become a patient, you truly learn the virtue of patience. When living with a chronic illness, you learn to be still and to wait because we often have no other choice. We learn to wait for a diagnosis. We learn to wait for the severe and debilitating symptoms to dissipate. It can be challenging and frustrating, but it truly teaches the meaning of patience.

"When living with a chronic illness, you learn to be still and to wait because we often have no other choice." Share on X

19. You begin to distrust your body and develop FOGO (fear of going out)

One of the biggest lessons I had learned and the most significant thing to have to adjust to is no longer being able to trust your body. Symptoms often appear without warning, and so you begin to fear them and avoid going out or seeing others. Why? Because you no longer know if you will suddenly becoming unwell, left unable to function, and as a result, will become stuck somewhere away from that which helps comfort you or be alone with them.

20. Doctors don’t know everything

There is nothing like being undiagnosed, desperately searching for what is wrong with you to make you realise that doctors are not infallible. They don’t know everything, and sadly you become only too aware on how often they can be dismissive of patients when they don’t know what is wrong.

21. The importance of pacing

Living with chronic illness and chronic pain means that you have to be aware of your limits, and pace accordingly. This could mean getting up earlier with enough time to be organised, and taking time so not to overexert yourself. Or leaving the house earlier than usual in case you are unable to walk as quickly as the previous day.

22. The importance of celebrating the small achievements

There is no doubt that chronic illness takes a lot. We begin to focus on what it has stolen, and what we can longer do, often feeling like a failure and becoming frustrated as a result.  It is, therefore, important to celebrate what we can still do and be proud of the accomplishments that we do manage despite the limitations of chronic illness. 

23. You begin to feel lonely and isolated

Living with a chronic illness means that you become trapped and imprisoned inside a body that no longer feels like your own, and which no longer works the way it should. The severity of the symptoms also means a significant amount of time is spent in your home, very often, alone and you come isolated and feeling lonelier than you have ever felt before.

24. Your disorder does not define you

It is a big lesson that I often have trouble accepting. It can be so easier to succumb to the illness and begin to feel that it is all you are; that it defines you and your life. But a diagnosis is not another personality trait used to describe you, nor does it overpower the good qualities or those qualities which defined you previously. Illness is a part of us and our story but not one that defines it. 

"A diagnosis is not another personality trait used to describe you, nor does it overpower the good qualities or those qualities which defined you previously. Illness is a part of us and our story but not one that defines it." Share on X

25. The value of the internet and social media

Living with limitations, especially those that make you spend a large amount of time at home, and alone you begin to utilise the internet and social media to connect with others and help keep you entertained. The online world, I have learnt is a beautiful space for learning, sharing, and communicating. There are also brilliant communities for those living with chronic illness to both give and receive support.

26. Netflix, Amazon Prime, and all other TVOD platforms will become your best friend

When living with chronic pain, distraction will become the biggest weapon in your arsenal against this enemy. But there is often not much to do other than lie down and endure such symptoms.  Netflix et al. will become the best form of distraction, with some of the shows bringing some welcome relief. 

27. Shame and guilt is another unexpected side effect of living with a chronic illness

We often begin to feel shame and guilt for everything we can no longer do, and for not doing our share. Shame and guilt are also perceived for needing to cancel plans, and for needing constant help. And shame permeates at the thought that the illness has gone on for so long. Shame just for being ill.

28. Being ill can affect body image

It is hard to love or feel positive about a body that seemingly no longer listens to my signals. One that is continuously taunting me, letting me know of its dominance with its unpredictability. One which I do not know what it is going to do from one moment to the next. A body which I should have the utmost trust in, but only reminds me that it plays by its own rules. 

29. We begin to hide behind a mask to protect from judgements and feel ‘normal’

We women, living with a chronic illness, often will use make-up to construct a mask we can hide behind. A facade to allow us to blend in with everyone else and appear normal and healthy. It can help us to increase self-confidence and make us feel better about ourselves.

30. We are not warriors, we are just trying to get through each day

Often people like to paint us as fighters, or ‘warriors.’ But the truth is, we often don’t feel like warriors. During the darkest and most difficult times with chronic illness, we are merely enduring and trying to get through it. We are not warriors; we are just a person living with a chronic illness.

"During the darkest and most difficult times with chronic illness, we are merely enduring and trying to get through it. We are not warriors; we are just a person living with a chronic illness." Share on X

31. The spoonie community is full of compassion and support

I and so many others have had the privilege through the internet and social media to have met so many wonderful, caring fellow spoonies.

32. There can be joy found in the smallest of things

Despite the many dark and challenging times when living with chronic illness and chronic pain, there are still many moments of joy and happiness to be found. Even in the smallest and simplest things; such as an unexpected phone call from a friend, or enjoying eating a favourite chocolate bar.

33. Sometimes there are no answers

One thing that you learn from having a chronic illness is that you won’t always get a satisfactory explanation for why certain things happen. There are many people, unfortunately, who never get a definitive diagnosis, or what has caused the disorder in which they live. It is frustrating, but sometimes things simply are.

"There are many people, unfortunately, who never get a definitive diagnosis, or what has caused the disorder in which they live. It is frustrating, but sometimes things simply are." Share on X

34. Positivity and hope are not always the answer they appear to be

When living with a chronic illness, people often tell us to stay positive and maintain hope. Easier said than done when constantly experiencing severe and debilitating symptoms, right? Having faith usually only ends up with broken and ruined dreams, as often what we wish never materialises. Hope dashed when once again we wake up in pain. When the flame of hope extinguishes time and time again, our dreams begin to dwindle, becoming hopelessness, sometimes even into despair. Sometimes, accepting the reality is the easiest path and which doesn’t end in endless disappointment.

"When living with a chronic illness, people often tell us to stay positive and maintain hope. Easier said than done when constantly experiencing severe and debilitating symptoms, right?" Share on X
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The Reality of Living Through A Flare
In Chronic Illness

The Reality of Living Through A Flare

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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.  This March, as I am living through a debilitating and challenging flare, I am going to write about the reality of living through one.

Holidays! How we love and look forward to them! The ability to escape our everyday lives; the capability to evade the monotony and mundane aspects of our lives. A welcome break from our lives, especially those aspects that we don’t like or have trouble accepting.

When living with a chronic illness, oh how we wish we could escape our bodies; a wish that we could break away from the crippling and disabling symptoms that affect every facet of our lives. And never is this more true, when amid a cruel and torturous flare.

When living with a chronic illness, oh how we wish we could escape our bodies; a wish that we could break away from the crippling and disabling symptoms that affect every facet of our lives.

The capacity to run away and leave behind our weak, frail and pain-riddled bodies would be something that we would welcome in a heartbeat. But, this is merely a fantasy; something that could only happen in the imagination behind books or films.

During A Flare There Is Only Staying and Enduring

The reality is that we are trapped; imprisoned with no such ability to escape or run away.  Our bodies become prison cells shackling us inside its dark and murky walls, unable to move far, and although flares come and go, it still feels like a life sentence us, an innocent victim, as the realisation that these flares will reoccur time and time again. 

There is no break or respite when living with a cruel and relentless flare.  No, there is only staying; trapped inside the prison cell that is our body and only able to lie and endure the harrowing effects of our symptoms.  

"There is no respite when living with a cruel and relentless flare.  No, there is only staying; trapped inside the prison cell that is our body and only able to lie and endure the harrowing effects of our symptoms." Share on X

There is a lot of staying when living through a horrible and debilitating flare. Yes, much time becomes spent living inside a body that often no longer feels like our own, one that has been taking over by illness and its accompanying symptoms.  But during a flare, there is a lot of staying inside our homes, our sanctuaries, places that we deem safe even when illness and its symptoms invade them. 

curled up in a foetal position because of pain
Yes, much time becomes spent living inside a body that often no longer feels like our own, one that has been taking over by illness and its accompanying symptoms.

Pain and illness have a habit of making our lives shrink as for days, weeks, and sometimes even months, we are unable to venture far from our homes if at all.  As such, do not have the opportunity to see other people apart from those we live with, leaving us feeling isolated. 

How we wish during a flare that the exacerbating symptoms would leave. Still, they prove to be stubborn, refusing to go, staying in our lives for the foreseeable future at least.

During A Flare, There Is No Doing

During a flare, there is no doing. No, there is only suffering and enduring severe and continuous symptoms. The pain, fatigue, and other persistent and tenacious symptoms leave us in bed, unable to function or participate in everyday life.  And as such, resting, waiting for the symptoms to subside and the flare to pass becomes the new norm.

"The pain, fatigue, and other persistent and tenacious symptoms leave us in bed, unable to function or participate in everyday life.  And as such waiting for the flare to pass becomes the new norm." Share on X

In my years of living with a chronic illness, the only doing during a flare is finding new ways to do things without exacerbating the already debilitating symptoms. We do what we can, but it can often feel like it is not enough. And as such, we no longer feel productive, or someone who is doing. We think, therefore, that we are a burden.

black and white photo of woman staring out of a window
During a flare, we must learn new and inventive ways to do things without exacerbating the already severe symptoms.

During a flare, it certainly feels that the days and weeks filled with nothing or at least the bare minimum.  No, during an exacerbation, our days are not filled with doing; the days and weeks become concerned with coping and surviving.  

"No, during an exacerbation, our days are not filled with doing; the days and weeks become concerned with coping and surviving." Share on X

Not Being, Just Existing

Even when living with the constant and persistent presence of chronic illness, we still manage to carve ourselves an identity outside of it.  We know who we are, and can define ourselves beyond that of someone living with a long-term health condition. 

When amid a severe and debilitating flare it can feel that we are barely being, only existing. Photo by Bianca Salgado from Pexels

But when living through an endless, paralysing flare, we no longer feel like ourselves. Our life, our whole being becomes revolved around the current, paralysing exacerbation and the symptoms that accompany it. Our being becoming limited by the severe, debilitating symptoms, and left unable to the things that everyone else often takes for granted. 

"When living through an endless, paralysing flare, we no longer feel like ourselves. Our life, our whole being becomes revolved around the current, paralysing exacerbation and the symptoms that accompany it." Share on X

…But Starting Towards Targeting Goals

But it can become tiresome, living our lives with such restricting limitations. And as such, we begin to push our limits somewhat to stave boredom and see more than the four walls of our prison; a prison constructed by chronic illness and particularly the repeated flares.

"But it can become tiresome, living our lives with such restricting limitations. And as such, we begin to push our limits somewhat to stave boredom and see more than the four walls of our prison." Share on X

In my experience, confidence can take a real battering when a severe and impairing flare. During these times, I am unsure and apprehensive when doing something or going somewhere, which before came readily and with no hesitation. But during a flare, or for some time after it, I become anxious as I am afraid that doing so will trigger another onslaught of unpleasant symptoms.

woman wearing distressed denim jeans sitting down inside room
When living with chronic illness and burdened by a flare, we can lose some of our confidence and become unsure and apprehensive about our everyday life. Photo by Imani Clovis on Unsplash

And so, I set myself small, little targets to achieve certain things. Particularly, visiting such places that I have found to trigger symptoms such as dizziness or those places where I’ve experienced falls. When I meet these targets, I reward myself, although the real reward is the increased confidence it gives me.

The Knowledge of Future Flares Weighing Heavily On My Mind

Experiencing and living through a flare, is incredibly unpleasant; it severely limits our lives and the choices available to us. So, it weighs heavily on my mind that this current flare will not be the last. The weight of the knowledge that this condition is my life now, and seeing future impending downturns is burdensome. Such insight can be frightening and discouraging; we want normality and freedom from the confines of pain and illness.

I know that I will adjust. I know that eventually, I will endure and persevere against such adversities. I withstand it because I have to. But I also know that I will survive because I have done before and able to again.
"Experiencing and living through a flare, is incredibly unpleasant; it severely limits our lives and the choices available to us. So, it weighs heavily on my mind that this current flare will not be the last." Share on X

It is further discouraging with the knowledge that such downturns are becoming more frequent and severe. Such awareness is bothersome and frightening. However, when weighing all the evidence from previous exacerbations in symptoms and functioning, I know that I will adjust. I know that eventually, I will endure and persevere against such adversities. I withstand it because I have to.  But I also know that I will survive because I have done before and able to again.

"I know that I will adjust. I know that eventually, I will endure and persevere against such adversities. I withstand it because I have to.  But I also know that I will survive because I have done before and able to again." Share on X
The Reality Of Living Through A Flare
March Link-Up Party with A Chronic Voice
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