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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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A Not So Very Normal Life
In Chronic Illness

A Not So Very Normal Life

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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
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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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Loss In The Time of Chronic Illness
In Chronic Illness

Loss In The Time of Chronic Illness

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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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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
34 Things I've Learnt in 34 Years
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