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In Chronic Illness

Depression: The Darker Side of Chronic Illness

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Trigger Warning: Descriptions of Depression, Suicide and Suicidal Thoughts

I love losing myself in a story. I especially love doing so when experiencing adversity and setbacks in my health. It allows me the opportunity to escape from my life dictated by illness. Instead, I can experience excitement and adventure, albeit in my vivid imagination. With a clear beginning, middle and end, stories feel predictable and reassuringly safe with their linear narrative. Because living with a chronic illness is terrifyingly unpredictable, it has no neat beginning, middle and end. Chronic illness offers no arc, no gratifying climax or satisfying resolution. Instead, its narrative is chaotic, leaving you unsure which chapter of the story you are on. Or which chapter comes next.

In my last post, I wrote about the deterioration I have experienced in my symptoms of FND. A decline that I was entirely unprepared for and which I could not have foreseen. Acceptance, which I once worked so hard to achieve, was suddenly wrenched from my grasp. Once again, I found myself adrift, lost and trying to navigate the five stages of grief I addressed so long ago to find acceptance for this new body I now inhabited.

When confronted with worsening symptoms, we find ourselves thrown back into the five stages of grief and desperately searching for a way back to acceptance – a photo by Sofia Alejandra from Pexels.
"Acceptance, which I once worked so hard to achieve, was suddenly wrenched from my grasp. Once again, I found myself adrift, lost and trying to find acceptance for this new body I now inhabited." Share on X

As the days and months passed, I continued to be besieged by severe, unyielding symptoms. Any hope and positivity I possessed began to be concealed by dark, stormy clouds. As I struggled and wrestled with debilitating and disabling symptoms, I found that not only my physical health was suffering. So too was my mental health; the five stages of grief became fixated on just one: depression.

"As I struggled and wrestled with debilitating and disabling symptoms, I found that not only my physical health was suffering. So too was my mental health; the five stages of grief became fixated on just one: depression." Share on X

As Symptoms Worsen, Depression Can Start to Settle In

But it’s not only depression that paid a visit during the darkest days. Anxiety, too, joined the solemn party. My body, time and life became dictated by pain and illness; I became on edge about everything. Every day I edged ever closer to the abyss, with dark thoughts like hands extending and pulling me toward the brink.

Depressive thoughts extending like hands pulling me toward the abyss
"My body, time and life became dictated by pain and illness; I became on edge about everything. Every day I edged ever closer to the abyss, with dark thoughts like hands extending and pulling me toward the brink." Share on X

Soon, the presence of every persistent, unyielding symptom eclipsed everything else in my life. I felt numb to everything besides the severe, burning pain or the unrelenting, uncontrollable trembling in my legs. A pang of incredible sadness and darkness shrouded me, a deep depression settling into my life. I felt hopeless and helpless as I existed amidst it all, with no choice but to endure and continue on living. The future felt bleak and doomed as it seemingly only offered more of the same, or I feared there would be further deteriorations of my health and mobility.

I lost my appetite due to feeling constantly sick. I hardly slept. The effort of just trying to smile felt impossible, and a frowned, sad expression became the face I displayed to the world. Crying came so effortlessly, sobbing so much that I thought I would drown in my tears. Everything felt like such an effort that many things fell by the wayside as I had no energy or motivation to do anything. I no longer found enjoyment in the activities I love; even reading failed to bring the pleasure and escapism it previously did. I was moving through the days but not experiencing them.

"The effort of just trying to smile felt impossible, and a frowned sad expression became the face I displayed to the world. Crying came so effortlessly, sobbing so much that I thought I would drown in my tears." Share on X

Depression and Suicide: Death Can Sometimes Feel More Favourable Than Living A Life Sentence With a Chronic Illness

Each night I hoped that death would come for me, to free me from the pain and anguish that illness so often creates. But as I awakened each morning, I felt an overwhelming disappointment that I was still alive. I felt that life was no longer worth living, so I wanted mine to end. And then, on one awful, trying night, a night battling extreme, unrelenting symptoms, I tried to take my own life.

"Each night, I hoped that death would come for me, to free me from the pain and anguish that illness so often creates. But as I awakened each morning, I felt an overwhelming disappointment that I was still alive." Share on X

In complete despair, and with no end in sight, I placed a pillow over my head and attempted to smother myself with it. I had it over my face for a few minutes, light-headed from a lack of oxygen. I don’t know what made me stop, but I quickly removed the pillow from my face. Gasping for air, I dissolved into fits of tears, feeling shocked and shame at what I had just done.

I don’t think I ever actually wanted to die. Not really. I couldn’t see any other option as I felt depleted from fighting the pain, anxiety, depression, as well as a myriad of other symptoms for so long. I thought I had no more fight left in me. My thoughts always focused on the longing for the pain and the other cruel, relentless symptoms to cease. I wanted a break, some peace from the constant, horrible symptoms torturing my body.

When you live with a chronic illness, you know it is one with no expiry date. The knowledge that the pain and illness’s other debilitating symptoms are permanent can make death seem favourable. Suicide can seem the most exquisite kind of freedom, freedom from the pain and struggles of living with a chronic illness.

Same Shit, Different Day
Every day, an apt description of life with a chronic illness can feel the same as the constant, disabling symptoms that take over your life. It makes wanting to live almost impossible at times – a photo by Renda Eko Riyadi from Pexels.
"The knowledge that this debilitating illness is permanent can make death seem favourable. Suicide can seem the most exquisite kind of freedom, freedom from pain and struggles that come with living with a chronic illness." Share on X

Depression, Like Chronic Illness Is Debilitating and All-Consuming

Like chronic illness, depression is debilitating and all-consuming. Depression is like a bloodsucking parasite. It wheedles inside your mind feeding off your deepest fears and darkest insecurities. A parasite that made me believe that I was weak, a failure, a burden, whispering that no one could or ever would accept or love me as I am. It amplified the difficulties I was facing as impossible obstacles I could never overcome, making my life seem even more senseless.

"Depression made me believe that I was weak, a failure, a burden. It amplified the difficulties I was facing as impossible obstacles I could never overcome, making my life seem even more senseless." Share on X

Because of this, I isolated myself, not telling a soul about how bad my symptoms had gotten or the effect it was beginning to have on my mental health. I already felt like a burden on everyone around me. I did not want to burden them further with my fears that my symptoms were worsening and me becoming sicker as a result. But instead, my silence, the things I have been holding inside, only locked me inside an isolating, lonely prison.

"I didn't want to burden anyone with my fears that my symptoms were worsening, But instead, my silence, the things I have been holding inside, only locked me inside an isolating, lonely prison." Share on X

But I found that all my struggles seemed more bearable when I eventually gave a voice to everything I had held inside. It didn’t magically cure my symptoms or heal the depression that had wormed its way into my life, but I suddenly felt lighter somehow, knowing that I didn’t have to shoulder the burden alone anymore.

Asking For Help Can Be Scary and Intimidating But Really Helps When Struggling

I managed to schedule an appointment with a doctor at my local surgery. Thankfully, the doctor I saw was fantastic, spending over half an hour with me discussing the deterioration in my symptoms associated with my neurological disorder as well as the depression and suicidal thoughts. She also gave me a neurological examination. After a discussion, we decided to increase the medication I am already taking to treat depression and anxiety. The doctor is also referring me back to neurology for an urgent appointment. One I am still waiting on four months after that same appointment.

So, how am I feeling now? Well, the symptoms that had worsened all those months ago are still as bad. They continue to wreak havoc on my life, making everything extremely challenging. As a result, I still experience down days, many more than I would care to admit, and definitely, more than I would want. I am receiving help and support on coping strategies, practising mindfulness, and building resilience. I am focusing on accepting what I cannot change and taking steps to improve on the areas of my life that I can. All while trying to find acceptance for this new version of me, Rhiann 2.0, with worsening symptoms and worsening mobility.

" I am focusing on accepting what I cannot change and taking steps to improve on the areas of my life that I can. All while trying to find acceptance for this new version of me." Share on X

But I no longer have thoughts of wanting to die or even harming myself, which is an improvement from where I was all those months ago. Instead, I am concentrating my thoughts on all the reasons I have for living.

"Instead of focusing on everything that illness has taken from me, I am concentrating my thoughts on all the reasons I have for living." Share on X

If You Are Struggling, Please Don’t Do So In Silence – There are places you can go for help and support

If you are struggling with depression and suicidal thoughts, I’m sorry. I know just how tough it can be, but please don’t struggle in silence. Even if you cannot confide in a friend or family member, many organisations and helplines can help and give support. It may be a cliche, but talking about it indeed help, becoming unburdened and lighter from keeping it locked inside.

UK Samaritans: 116 123
SMS SHOUT to 85258
UK Calm (Campaign Against Living Miserably): 0800 585858

Mental Health Helpline For Wales: CALL (Community Advice and Listening): 0800 132 737
National Suicide Helpline: 0800 689 5652
National Suicide Prevention Helpline (US): 1-800-273-8255
Beyond Blue (Australia for help with depression, anxiety and suicide): 1300 22 4636
Canada Suicide Prevention Service: 1-833-456-4566

Or, for any other country, there is a list of suicide crisis lines available here.

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5 Ways to Find Light In The Darkness
In Chronic Illness

5 Ways to Help Find The Light In The Darkness

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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.  For November, I have looked at ways to help find the light in the darkness during depressive episodes.

Trapped Inside A Revolving Door of Misery

During recent times it has often felt that I have become trapped inside a revolving door of misery. The symptoms I live with; symptoms that are already constant have become even more severe and relentless. Unsurprisingly, this has had a knock-on effect on my mental health; becoming depressed and anxious as the present flare refuses to abate. The result of which only exacerbates the already oppressive physical symptoms, which only makes me even more depressed and anxious. All in all, it feels like a terrifying ride I cannot get off.

"It has had a knock-on effect on my mental health; becoming depressed and anxious. The result of which only exacerbates the already oppressive physical symptoms, leaving me even more depressed and anxious." Share on X
Living with a chronic illness can have a significant impact upon mental health and as such it can be difficult to find light in the darkness especially during a significant and prolonged flare.

Life with FND has taught me that I have very little control over its physical symptoms. The symptoms have a mind of their own, and any attempts to rein them in only prove to be futile. When experiencing this type of severe flare, the only thing I can control is how I react to such events. And the only aspect of my health and current flare I can take control of is my mood. It is up to me, therefore, to find ways in which to find the light in the darkness; ways in which to lift my mood and make me feel a little better despite such unrelenting physical symptoms.

"Life with FND has taught me that I have very little control over its physical symptoms. The symptoms have a mind of their own, and any attempts to rein them in only prove to be futile. The only thing I can control is how I react." Share on X

5 Ways to Help Find Light In The Darkness During Depressive Episode

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What works for one person, however, may not work for another. So often it is trial and error to see what will work for you. But below are some suggestions which may help you out of a depressed or anxious funk, and help find light in the darkness during such episodes.

Incorporating a Comfort or Joy Box In Your Life

Well, what is a comfort or joy box? Put simply, a comfort or joy box is one which you keep items that make you feel happier or bring you comfort and to help you cope on those inevitable bad days.

"Put simply, a comfort or joy box is one which you keep items that make you feel happier or bring you comfort and to help you cope on those inevitable bad days." Share on X

I know how all-encompassing those days where anxiety and depression run rampant that it can be difficult even to remember what helps you get through such difficult days. Or fatigue that is so intense prohibits you from even searching for such items. Hence, by keeping them in a box altogether, in easy reach is so useful. Even using bright, colourful decorations to adorn the box is also enough to lift your mood during the dark days.

In my box, I like to include a whole host of brilliant comedy films; The Proposal starring Sandra Bullock being amongst my favourites. It isn’t easy to find humour or joy when chronic pain is overpowering your entire life. Watching such brilliantly films, therefore, is a welcome distraction from the excruciating effects from living with chronic illness. And it’s also a welcome reminder that I can still laugh and find joy even through the difficult days!

  • My own personal Self-Care Box

Experimenting With Pushing Your Comfort Zone

I know that when withstanding such challenging flares, it can feel safer staying within your comfort zone. Often, the depressed and anxious voices that accompany such confronting periods whisper lies that you cannot do something or push yourself because of the limitations caused by such intense symptoms.

"Often, the depressed and anxious voices that accompany such confronting periods whisper lies that you cannot do something or push yourself because of the limitations caused by such intense symptoms." Share on X

And although yes, it feels safe and secure staying within these limits, it only serves, however, to worsen the depressed and anxious feelings that accompany such flares. Staying inside the self-imposed limits chips away from your self-confidence, hating yourself, even more, when unable to escape.

But by pushing yourself outside your comfort zone using small, incremental steps may help you to increase your self-confidence and lessen anxiety. When successfully stepping outside your comfort zone, it increases your self-confidence as you begin to realise that you can do that thing or go to that place despite your symptoms telling you otherwise. The anxiety that arises when leaving your comfort zone also begins to lessen as you realise that you can do more than you believe.

"But by pushing yourself outside your comfort zone using small, incremental steps may help you to increase your self-confidence and lessen anxiety." Share on X

Sanitising Negative Thoughts

When experiencing a prolonged severe flare, it is so tempting to attend to the negative, depressed and anxious thoughts that accompany such a time. The thoughts that scream ‘you’re worthless and useless’, or those that tell you that this current flare will never end. And thoughts that entirely concentrate on how awful you are feeling and how oppressive the symptoms have become.

"When experiencing a prolonged severe flare, it is so tempting to attend to the negative thoughts that accompany such a time. The thoughts that tell you that this current flare will never end." Share on X
Although it can be challenging to think positively when experiencing intense symptoms, sanitising negative thinking can help you become more positive and making it easier to cope with life with a chronic illness – photo by Blu Byrd from Pexels.

These thoughts, unfortunately, we are forced to hear. However, we can choose not to listen to them or give them the attention they crave. Instead, in order not to be buried further into a pit of depression and anxiety, we need to learn to ignore and sanitise such negative thinking.

"Instead, in order not to be buried further into a pit of depression and anxiety, we need to learn to ignore and sanitise such negative thinking." Share on X

Instead, we need to focus on positive thinking and reminding ourselves of affirmations such as ‘This too shall pass.’ The more that we can think more positively, the more we start to believe such thinking and start to see the light out of the darkness.

Launching A Regular and Consistent Sleep

Sleep can be a tricky endeavour when living with chronic illness and chronic pain. And especially during severe flares, it can be even harder to achieve. But, not getting enough sleep can also worsen feelings of depression and anxiety, further making it harder to cope with the physical demands of chronic illness. I know myself, that if I do not get enough sleep the next day I am miserably exhausted, pain levels rise, mood dampens and left unable to cope.

As much as sleep can be hard to come by when living with pain and other debilitating symptoms. Not getting enough can also worsen feelings of depression and anxiety too – Photo by Ivan Oboleninov from Pexels.
"Sleep can be a tricky endeavour when living with chronic illness. During a flare, it can be even harder to achieve. But, not getting enough sleep can also worsen feelings of depression and anxiety." Share on X

But by developing a healthy bedtime routine; one that lets your body know it’s time to sleep can really help towards a good night’s sleep. For example, going to bed around the same time, every night allows the body to adapt to a more healthy circadian rhythm. And indulging in your favourite self-care practices before bedtime is also recommended as a way of relaxing both body and mind. For me, I like to read for at least thirty minutes before switching the light off. If pain continues to be a problem, consider using a heating pad against the most painful areas.

"But by developing a healthy bedtime routine; one that lets your body know it's time to sleep can really help towards a good night's sleep." Share on X

Writing The Blues Away

Illness has taken so much in my life – my mobility, identity and self-confidence, to name a few. For me, writing has allowed me to reclaim power back from the claws of chronic illness. Articulating my experiences through journaling and blogging allows me to process the experience of being chronically ill. It also helps validate such experiences, revealing hidden vulnerabilities that even I may not have been aware of, if not for purging my emotions on paper.

"Illness has taken so much in my life. For me, writing has allowed me to reclaim power back from the claws of chronic illness." Share on X

By writing my feelings, and becoming aware of masked insecurities it also allows me to become better adept at finding ways to manage fears and anxieties that arise during difficult times. For me, writing has become an important outlet for the frustrations of living with a chronic illness. It truly is a cathartic experience.

Writing can be an extremely cathartic experience and one which allows you to connect and help others. Thereby, it is an outlet that allows you to be productive – making you feel accomplished and happier – photo by Lisa Fotios from Pexels.

A Purpose In Writing

But it is a cathartic experience that not only helps me but allows me to connect with and help others in similar situations. Every like, retweet and comment on one of my many blog posts is a reminder that I am not alone in my struggle of living with illness, and hope others feel the same when reading my words. It is writing that has given me purpose and confidence in my abilities as my skills have improved. And I have become happier and self-confident as a result.

"Every like, retweet and comment on one of my many blog posts is a reminder that I am not alone in my struggle of living with illness, and hope others feel the same when reading my words." Share on X

One exercise that has really helped me is by writing down everything that I am worried about before bed. By leaving my anxieties on the page, they are no longer playing on my mind and making a good night’s sleep much easier to come by.

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Chronic Illness: A Battle of Mental Health
In Chronic Illness

Chronic Illness: A Battle of Mental Health

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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. As World Mental Health Day fell in October, I decided to use the prompts to discuss chronic illness and mental health.

Chronic Illness: Directing a Battle Concerning Our Mental Health

In my last blog post, I recited a famous quote from the Shakespeare play, As You Like It. All the world’s a stage, And all the men and women merely players.” But if I indeed am the player or actor than what role would chronic illness assume? 

After much thought, I concluded that chronic illness surely would assume the position of a director. A director, the person in charge and assumes all responsibility for every facet of a film or stage production. It can feel like chronic illness plays a similar role in the lives of those forced to live with it.  

When living with a chronic illness it not only has a significant impact upon your physical health, but has one on your mental health also. Image by Wokandapix from Pixabay.

For much of the time, illness, much like a film director, has control over every facet of our lives. It has control over how we think and feel, or even whether we can get out of bed. It often drastically limits what we can do, and brings a whole lot of uncertainty to everyday life. And it has complete control over where and when the symptoms that accompany it will strike.

"For much of the time, illness, much like a film director, has control over every facet of our lives. It has control over how we think and feel, or even whether we can get out of bed." Share on X

But chronic illness is not directing a cute rom-com or a cheesy comedy. It is producing a narrative depicting a battle; a battle that is not only physical but one that also concerns our mental health.

"But chronic illness is not directing a cute rom-com or a cheesy comedy. It is producing a narrative depicting a battle; a battle that is not only physical but one that also concerns our mental health." Share on X

Acquiring Not Only Physical Symptoms But Symptoms Associated with Mental Health Also

Once again overwhelmed by severe and debilitating symptoms, it feels that FND is once again directing over my entire life. Trembling and weakness, particularly in my legs, have become incredibly tenacious, and the pain associated with it especially incessant. It is easy to become morose and unhappy during a surge of unrelenting and ceaseless symptoms such as this.  

"It is easy to become morose and unhappy during a surge of unrelenting and ceaseless symptoms." Share on X

As my legs continue to buckle when trying to stand, I can only lie down and surrender to the torment such symptoms have on my life. It is a constant reminder that I no longer have control over my illness. It’s accompanying symptoms once again prove that they play by their own rules. As I lose control over my body, panic often ensues as I feel unsafe and vulnerable. I develop a deep distrust of my body as it continually deteriorates and redefines itself as something weaker than before.  

It is easy to fall into despair and hopelessness, even depression when experiencing a surge of unrelenting and debilitating symptoms—photo by Yuris Alhumaydy on Unsplash.
"As I lose control over my body, panic often ensues as I feel unsafe and vulnerable. I develop a deep distrust of my body as it continually deteriorates and redefines itself as something weaker than before." Share on X

The Grief and Burden of Being Chronically Ill; Leading to Feelings of Anxiety and Depression

As the hatred and distrust of my body continue to grow, it slowly develops toward hatred of myself also. Severely limited by the symptoms that continually plague me, I begin to feel useless. Weak. Worthless. A burden. The sadness of the permanency of my condition and the lack of relief that my prescribed medications deliver weighs heavily. Many a morning, I find myself in floods of tears as the burden of being ill becomes too much to bear. Once again, the grief of being chronically sick overwhelming both my body and mind.

"The sadness of the permanency of my condition and the lack of relief that my prescribed medications deliver weighs heavily. Many a morning, I find myself in floods of tears as the burden of being ill becomes too much to bear." Share on X

Anxiety and fear of the future haunt my thoughts as I worry that I continue to worsen; troubled by what FND will take from me next. The permanence of the condition and the uncertainty that it leaves in its wake leaves me anxious and fearful; anxious thoughts wrangle for attention and shining a flashlight of everything I cannot control.  

"The permanence of the condition and the uncertainty that it leaves in its wake leaves me anxious and fearful; anxious thoughts wrangle for attention and shining a flashlight of everything I cannot control. " Share on X

But it’s not only anxiety of the future that continually haunts me. With the increase of falls that I experience, leaving the safety and comfort of home has become daunting and anxiety-inducing.  

As the emotional burdens of continue to grow, they become bigger and bigger metamorphosing into depression and anxiety.

As the emotional burdens of continue to grow, they become bigger and bigger metamorphosing into depression and anxiety. Anxiety and depression becoming other symptoms to contend with alongside the physical manifestations of chronic illness. 

"As the emotional burdens of continue to grow, they become bigger and bigger metamorphosing into depression and anxiety. Anxiety and depression becoming other symptoms we are forced to contend with." Share on X

Disappointing Myself Because of Limitations 

As much as I experience triumphs and progress from the confines of FND, they are often fleeting. The impact of its symptoms revealing the limitations of my body and health. Things that once came effortlessly have now become difficult. I often find myself unable to get out of bed straightaway in the mornings due to the severe weakness in my legs, for example. The ever-growing limitations have made me more reliant on others. As a result, I often feel great disappointment in myself. 

"As much as I experience triumphs and progress from the confines of FND, they are often fleeting. The impact of its symptoms revealing the new limitations of my body and health." Share on X
girl crying while touching glass window
Living with disabling symptoms can result in anxiety about a lot of things, but especially about going out as we can never know when symptoms are going to appear. It can lead to a lack of confidence, isolation and depression.

Recently, with the increasing number of times my legs have collapsed, I have lost all confidence in not only them but going out. As a result, I have backed out of countless trips, anxious that my legs will do so while out. With every cancelled plan, the disappointment I feel toward myself only deepens; feeling not only physically weak but mentally too. Such incidents continually chip away at my self-confidence and deepening the depressed feelings also. 

"With every cancelled plan, the disappointment I feel toward myself only deepens; feeling not only physically weak but mentally too. Such incidents continually chip away at my self-confidence and deepening the depression." Share on X

Switching Up Thoughts of What Came First 

Many of the symptoms that I experience due to FND can also be signs of conditions such as anxiety. Anxiety itself can produce physical symptoms such as shaky legs, a racing heart and shortness of breath as examples.  

The lies that depression and anxiety whisper to you can lead to self-doubt and the belief that the symptoms you are experiencing are all in your head and ultimately your fault—photo by Kat Jayne from Pexels.

For me, I am well aware of this as for many years, the symptoms I was experiencing, were attributed to depression and anxiety. Such conclusions only strengthened when physical tests came back as normal. It took many years and many many hospital appointments before receiving the diagnosis of a Functional Neurological Disorder and probable Cerebral Palsy. At that defining appointment, the specialist assured me that the symptoms weren’t due to depression or anxiety; and it was not ‘all in my head’ as I had heard many times before. Instead, the depression and anxiety I experience are a result of living with a long-term neurological condition.

"Depression and anxiety regularly feed lies to you, convincing you that the symptoms experienced are your fault. They persuade me that it is indeed all in my head, and consequently, I am to blame for me being sick." Share on X

But still, as depressed and anxious thoughts run throughout my brain, I begin to doubt this fact, however. Depression and anxiety regularly feed lies to you, convincing you that the symptoms experienced are your fault. During my worst times with this illness, they persuade me that it is indeed all in my head, and consequently, I am to blame for me being sick.

Chronic Illness: Forming A Battle Between Physical and Mental Health

In my history of living with FND, depression and anxiety have become adjoining features of my experience with it. But it is not only my experience. According to Paul Mayberry and a Metro article on the relationship between chronic illness and mental health, forty-nine per cent of those suffering from a chronic illness are also prescribed anti-depressants. Research has also suggested that anxiety is more common in persons with a chronic disease than in the general population. 

When battling through a severely debilitating flare, it can feel as though both my physical and mental health are conspiring against me
"According to Paul Mayberry and a Metro article on the relationship between chronic illness and mental health, forty-nine per cent of those suffering from a chronic illness are also prescribed anti-depressants." Share on X

Physical and mental health are inextricably linked, both working in unison and having a significant effect on the other. When battling through a severely debilitating flare, it can feel as though both my physical and mental health are conspiring against me. But, I have also learnt that to thrive, I cannot focus on just one aspect of my health. Instead, I need to work on both physical and mental health to live a happier and brighter life. 

"When battling through a severely debilitating flare, it can feel like as though my physical and mental health are conspiring against me." Share on X
October Link-Up Party with A Chronic Voice
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In Chronic Illness

Self-Care & Happy Distractions

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Living with a long-term health condition is hard.  Every day seems the same with juggling the ordinary daily tasks of life with the many symptoms and other effects that chronic illness imposes on our body.  There are so many demands on our bodies, which is why self-care is so critical to our overall well-being.

Self -care can take many forms.  Relaxing, participating in a favourite activity or hobby or just taking time out to enjoy a luxurious bubble bath are some ways which we can take time for ourselves to rest and unwind from the stresses of life with chronic illness.  And self-care is also important to help elevate your mood and provide a little light and happiness from the darkness that chronic illness can sometimes create. sunblock-skincare-healthy-skin-heart-161608.jpg
I’m writing about a special brand collaboration, which I thought would be beneficial for those like me, living with a chronic illness and finding that it has an adverse impact on their mental health, suffering from stress, anxiety or depression alongside their physical health problems.

The brand in question is called The Distraction Box, started by the lovely Rachael and Samantha.  I did a little Q and A with Rachael, one of the founders behind The Distraction Box about the inspiration behind the company and about self-care.
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  1. Hi Rachael, Why don’t you start by telling us a little bit about yourselves and your business The Distraction Box
    Distraction Box was founded by two female business women, Rachael and Sam.  Rachael was forced to leave her high-flying career in Marketing due to health challenges.  After major spinal surgery, serious complications and a subsequent diagnosis of a further two nasty chronic illnesses, Rachael’s life changed dramatically overnight.  Rachael has to work really hard on her health to participate in life – including her emotional health.  That’s where the business idea came from – passion and personal learnings.
    Sam is a Dr of Physiology who has a particular interest in the effects of stress on our physical health.  Sam has also had to live with depression since the age of 17 so also had to work hard on her emotional health. Both founders share a passion for emotional well-being so we thought we’d make a great team!We launched the business in October 2016 and position ourselves as a well-being subscription box for the mind.  We also have one-off boxes which are great for gifts for loved ones going through hard times.   Our subscription packages are available for those who want to invest in their emotional well-being on a regular basis.  We encourage people to invest in their emotional health and not just their physical health.  We have a monthly, 3 monthly and 6 monthly subscription packages and each can be cancelled at any time and very easily.
  2. Where did the inspiration for The Distraction Box come from?  It’s a great name!  How did you decide upon it?
    I used to be an athlete and had the belief that you could do anything in life, as long as you were prepared to work hard enough, and if your heart desired it.  Then, 6 years ago I had a major health challenge that changed my life.  In a nutshell, I suddenly had physical limitations that meant I had to change my life completely and found myself not being able to do ‘what I wanted when I wanted.’This affected my emotional well-being, and I was struggling to cope with grieving my old self, and the frustrations with my new life.  Thankfully I was offered counselling to help me with my emotions – and I found the courage to embrace it.  This was the start of my journey with coming to terms and accepting what life has thrown at me, and even changing my mindset to help.  During that journey, I joined a health group which focused around teaching people how to live with chronic illness.One of the tools I was taught was how to create distractions from physical pain and/or the emotions that come with living with an illness that affects your everyday.  I created my own Distraction Box filled with items that comforted me, helped ease physical symptoms, or simply cheered me up when I was struggling to remain positive.  I love creating my own Happy Distractions and felt that more of us should create them in our everyday lives.  We all face stress and pressure, but not enough of us take the time to ‘switch off’ or manage overwhelming emotions in a positive way.
  3. How do you decide on the products you select for the boxes?  What are your favourite products that have been inside your lovely boxes?
    Both of the founders spend a lot of time researching the right products that we feel would create happy distractions.  We can’t pick many favourites as we love them all (or they wouldn’t be in the box).  However, we love JustBe Botanicals, Re-Mind notepads and the slate heart of self-love which was featured in our February box.
  4. Self-care is a big deal within the chronic illness community.  What are your favourite ways to relax and unwind?
    I have too many ways! I can’t say a specific favourite, but I do love water.  I’d say visiting the pool – even if it’s for a float to take the edge off my pain, or to go for a swim and build strength, I love it.  I have regular hot baths too and have different bath bombs and oils depending on what mood I’m in.  I also meditate once a day if I can – I love finding out where my mind will take me that day!
  5. What do you hope to achieve with The Distraction Box? We hope to spread a little happiness across the UK and beyond, but with an important message; emotional well-being is just as important as physical health.  Working on the mind is a strength and not a weakness – we are so passionate about that.On a practical note, we are hoping the boxes will raise enough money to set up ‘talkitout’ which will change the way the UK view talking therapy.  Watch this space…

I was sent a box for myself to unveil and review for the blog.

The Distraction Box for March was based on the theme ‘Hibernation to Happiness’ which was essentially all about stepping out of the hibernation period of winter and into the lighter, brighter days of spring. 

The box arrived after a long night of insomnia as a result of chronic pain, so just receiving the box was enough to cheer me up.  Upon opening the box, I was greeted with a little green parcel which contained all of the month’s goodies.

It was beautifully packaged and wrapped with care which made me appreciate receiving it even more.  It felt special like having received a special gift for Christmas or a birthday.  With the goodies was also a little booklet which outlined the theme for the month and a description of all the goodies contained in the month’s subscription box.

One of the first things that I noticed after opening the box was a gorgeous citrus scent from the Beefayre ‘Bee Happy’ Tea Lights that are scented with orange and jasmine essential oils.  It immediately lifted my mood and helped me to relax despite feeling uptight after a night dealing with pain.

One of my favourite ways to relax and unwind in the nights is to read or watch something on my iPad while I light a scented candle and so I really loved receiving these.  And they are natural which is a bonus!
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I have previously mentioned that the recent popular craze of adult colouring is also becoming a favourite form of self-care for me when I am feeling anxious or just need to distract my mind from the all-consuming symptoms.  So, I was ecstatic to receive a mini Mindful Colouring Pad with colouring pencils! They are sweet, and the best thing is that both the colouring pad and pencils are pocket sized – perfect for slipping into a coat pocket or handbag to take out on trips, such as hospital appointments so you can take a little time out from your thoughts or anxiety.
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Also, in the box was Birchall’s Green Tea and Peach Infusion Tea Bags and the BakedIn Gluten-Free Mug Brownie Mix, both ideal for those who are health conscious and want to look after their physical well-being as well as their emotional health.  I’m not gluten intolerant myself, but again the thought of Rachael and Sam for those who may have such intolerances really shows their understanding of such concerns within the chronic illness community.

I love writing handwritten letters to friends or other special people in my life.  And I also love to receive handwritten letters, in my opinion there is nothing better than to receive a thoughtful handwritten letter in the mail and which feel a lot more personal than an email or text message.  Which is one of the reasons why I participate in a project called Spoonie Post whereby every month you send a letter or card to a fellow chronic illness warrior to say hello or to cheer them up during difficult times.  In this month’s box was two cards with envelopes which I will be able to use for this project and brighten someone’s day!
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And finally, and probably my favourite item from this gorgeous and positive box was the Happy Mug (perfect to enjoy the green tea and peach in).  With simple colours, and finished with a rose gold detail it has a beautifully inspiring and positive quote that we should all aspire to every day.  I’m not a big hot drink fan, but I am sure that I will enjoy using this mug during times of self-care in the future.
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I loved this subscription box, and all the little goodies were perfect for taking the time to invest in my emotional well-being and for anyone else also living with the effects of a long-term health condition.  I know in the US and Canada various companies have subscription boxes specifically for those with chronic illnesses, but nothing similar here in the UK  (although The Distraction Box does ship worldwide).  However, I think The Distraction Box has this niche market in the bag and would definitely invest in a box in the future during a bad flare or maybe even buying it as a gift for someone going through a difficult time.

If you would like to try out a one-off Distraction Box or are willing to invest in your emotional well-being and sign up for a monthly subscription for a Distraction Box, then go and visit their website and use my code ‘brainlesionandme’ for a 10% off your first box/subscription and enjoy the benefits of their take on self-care for yourself.
And let us take a look at your enjoyment of your own Distraction Box by using the tag #HappyDistractions!

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The Soundtrack of a Chronic Life

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There’s not much in this life, especially in this modern age, which connects us all, but the music is one of them.  After all, it has been used as a means of expression and entertainment in all times and cultures.  Music, it is said is a powerful tool as a means of expressing emotions such as love, hope, joy, and regret as well as being a device for sharing our individual stories.

Everyone may not share the same taste in genres of music – some may prefer classical, whereas others enjoy hip-hop or rap for example.  However, whatever the preference of music, there are certain songs and melodies within the world of music that we can identify with and that conveys the emotional state that we are in, in that exact moment in time.

[Tweet “There are certain songs that we identify with; conveying the emotional state we’re in at that time.”]

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Melodies and the rhythms of pieces of music, for example, can inspire us to move our bodies in which words cannot.  However, as a writer and a person that loves words, I often find myself listening to the words of songs, and the story that it’s sharing with the world.  Sometimes, I even relate to the lyrics; feeling that my story and emotions are being shared through the words of the song.  By sharing with others, our favourite songs or pieces of music that affect us in some capacity is giving a glimpse into who we are as individuals.

[Tweet “I often relate to song lyrics; feeling that my story is being shared through the words of the song.”]

So, I was thinking of those songs, that has resonated with me over the years, and especially those that I can relate to as someone living with a neurological condition.  And so I thought I would share them in a blog post, so here is the soundtrack of a life with chronic illness…

‘Chains’ by Tina Arena 

I pretend I can always leave
Free to go whenever I please
But then the sound of my desperate calls
Echo off these dungeon walls

This hit song from the early 90s tells the story of someone trapped inside a loveless relationship, but in my opinion, it also eerily describes the isolation and vulnerability that comes from living with a chronic condition.

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Living with a long-term condition can feel like we are encased in chains from which we cannot break free from

Not only are we physically trapped within our fragile and uncooperative bodies but we are also a prisoner to the same surroundings for the majority of our time; the longest of our time away from home is very often the number of appointments that we have to attend. It often feels that I am at the mercy of my symptoms, especially since given the severity of the dizziness and the weakness in my legs, I am unable to leave the house by myself, resulting in being isolated within the same four walls for days on end.  It may not be an actual dungeon or prison, but if very often feels that I am kept a prisoner by a neurological condition and perhaps why I relate to this song and specifically these lyrics as much as I do.

[Tweet “‘Chains’ eerily describes the isolation that comes from living with chronic illness.”]

‘Hurt’ by Johnny Cash

I hurt myself today
To see if I still feel
I focus on the pain
The only thing that’s real
The needle tears a hole
The old familiar sting
Try to kill it all away
But I remember everything
What have I become
My sweetest friend
Everyone I know goes away
In the end

Anyone living with chronic pain is no stranger to the word hurt.  Chronic pain has unfortunately become a constant in my daily life, and all my legs seem to do is indeed hurt.  Chronic pain often becomes all-encompassing; the only reality at that particular moment we can focus on and which is the only thing that feels real (“I focus on the pain/The only thing that’s real”).

But the song does not only delve into the realities of living with chronic pain, but we can relate to its lyrics that discusses one such consequence of living with a chronic illness which is the breakdown of relationships, such as friendships.  Another repercussion of life dealing with severe symptoms is we very often need to cancel plans, often at short notice.  Although those friends at the time are understanding and concerned, when we cancel plans more and more, those friends stop their invitations and seemingly walk out of our lives leaving us more isolated and lonely than ever.

The consequence of living with chronic pain is not only physical but can also lead to emotional hurt also.

[Tweet “Anyone living with chronic pain is no stranger to the word hurt.”]

‘The Climb’ by Miley Cyrus 

Every move I make feels
Lost with no direction
My faith is shaking but I
Gotta keep trying
Gotta keep my head held high
There’s always gonna be another mountain
I’m always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I’m gonna have to lose
Ain’t about how fast I get there,
Ain’t about what’s waiting on the other side
It’s the climb
Chronic illness seems to take everything away from us – our independence, dreams, friendships, mobility to name but a few.  It’s a never-ending battle; with some victories that we can claim, and others we lose. Chronic illness often comes back stronger and more tenacious than ever and once again we are knocked to the ground once more.
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Our dreams and ambitions sometimes have to be forgotten, or alternatively, we have to think of creative ways to achieve them.  But above all else, we never give up; never give in our surrender to our symptoms.  We pick ourselves up and attempt the climb once again.  This is what the songs ascribe to – the struggles that we face, whether it be from illness or other problems in life, and the resilience and strength we possess to carry on regardless.
[Tweet “‘The Climb’ is a great metaphor for the struggles we face and the resilience we possess to carry on.”]
‘Demons’ by Imagine Dragons 
I want to hide the truth
I want to shelter you
But with the beast inside
There’s nowhere we can hide
No matter what we breed
We still are made of greed
This is my kingdom come
This is my kingdom come
When you feel my heat
Look into my eyes
It’s where my demons hide
The lyrics of ‘Demons’ really resonates with me during the dark times of living with chronic illness.  The depression and hopelessness that infiltrates my thoughts when the pain and other symptoms become too much to live with.
We hide these darkest and thoughts away from those closest to us; sheltering them from the beast that is depression and anxiety.  They come from nowhere and from which we cannot escape.  They are our demons and which seem to come to life with chronic illness.
[Tweet “The lyrics to ‘Demons’ resonates with me during the dark times of living with chronic illness.”]
Well, those are some of the songs whose lyrics I have found I can relate to from living with a neurological condition for all these years.  But what about?  What are the songs which you would add to a soundtrack to describe a life with chronic illness?  Add your suggestions and stories below:
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