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When the Days Blur

"Living with chronic illness is like battling through an endless storm. Some days bring gentle swells. Others, it’s all I can do to stay afloat." Share on X

A chronic illness turns life into a constant fight against an endless storm – some days, it’s gentle swells; others, it’s all I can do to stay afloat. I fight to keep my head above water, as pain, fatigue, and the invisible weight of it all threaten to pull me under. But through these waves, I’ve discovered something powerful: the quiet but steady force of hope. For me, hope and chronic illness are inseparable – hope is what keeps me moving forward, even when my body tries to hold me back. I’ve learned that despite the challenges of chronic illness, hope is what keeps me afloat.

"Hope and chronic illness are inseparable — hope is what keeps me moving forward, even when my body tries to hold me back." Share on X

Let me drop anchor for a moment and get real. This life isn’t easy. 

Some days blur into each other so completely that I lose time — not because I’m busy, but because I’m not. 

I wake up in the same bed, in the same body that refuses to cooperate and face the same routines that feel more like rituals of survival than living. Chronic illness has shrunk my world. It has weighed down my choices, flattening my day into cycles of symptoms, medications, appointments and recovery. Each day blends into another shade of grey. I sit behind the same four walls, wishing – like Ariel – to be part of the world beyond.

"Each day blends into another shade of grey. I sit behind the same four walls, wishing – like Ariel – to be part of the world beyond." Share on X

In the monotonous cycle of symptoms and exhaustion, it’s easy to feel lost. But I’ve found that hope and chronic illness, two opposing forces in my life, can coexist. It’s this hope that pulls me through the haze and reminds me there’s still a world beyond these four walls.

"Even from my bed, even on my worst days, I can still dream of the horizon." Share on X

Holding Onto Hope

But here’s the lifeline I cling to: hope. And for me, hope takes the form of a cruise ship. 

For me, holidays are so much more than just a break from the normality of daily life. They’re lifelines. Knowing I’ll be stepping aboard a ship of dreams has become a lighthouse in the fog — a bright spot on the calendar that gives structure to the shapelessness of sick days and sleepless nights. It’s so much more than a holiday; it’s a reason. A reason to get through the next appointment, the next flare-up, the next moment of despair when the walls of my bedroom feel like they are closing in. It’s a reason to believe that something different, something joyful, lies ahead. 

"It’s so much more than a holiday — it’s a reason. A reason to believe that something joyful still lies ahead." Share on X

THE JOY OF ANTICIPATION

At the sight of the confirmation email, anticipation begins to fizzle inside of me. Every part of the planning process feels like I’m reclaiming a little bit of control. Browsing the deck plans, researching shore excursions, imagining myself watching the sunset over endless water, each detail becomes a thread stitching together a tapestry of joy. 

Each cruise I plan is a beacon – proof that hope and chronic illness can coexist. Even my body demands caution, the excitement of the journey ahead reclaims a part of me that illness often tries to take away.

I imagine myself there, not enduring but experiencing. 

"I imagine myself there, not enduring — but experiencing." Share on X

It doesn’t matter that I might need a wheelchair or that I have to schedule my medications like a military operation. It matters that I’m reclaiming a part of myself that illness has stolen from me, and reclaiming a sense of freedom, as the ships set sail, and the horizon looms ahead of me. The vastness of the water opens in front of me, and suddenly, the world feels vast and full of possibility again. 

Memories That Keep Me Afloat

There, I’m not just a patient or a set of symptoms, but a person sipping a fruity mocktail garnished with an absurdly cheerful umbrella. I enjoy the feel of the sun on my face and the wind in my hair. Yes, pain and fatigue still come with me. But they’re not what I remember most. 

I think back to the moments that have stayed with me from past cruises, the memories that shine through the fog. It’s not the pain that I remember, but the history and beauty of the old part of Estonia. I only remember being awestruck at seeing The Little Mermaid for myself, finally in Copenhagen. In Stockholm, I remember the fun and joy of the Abba Museum, singing and dancing along to songs I know so well.

And it reminds me that joy is still possible. That my life, even with its limits, still has room for magic. Most of all, sitting on that balcony with miles of ocean beyond reminds me that I’m still living, not just enduring.

"Joy is still possible. Even with limits, even with pain — there’s still room for magic." Share on X

Riding The Rough Waters

Of course, it’s not always plain sailing. It’s not a cure, nor does it erase the reality of my illness. I have had to expect and accept the inevitable bad days. But they feel somehow different at sea. They don’t feel as heavy when the world outside my window is constantly moving, changing, expanding. I don’t feel as stuck. After a long day exploring wherever we’ve happened to dock, I feel a sense of accomplishment. I’m finally able to feel like I’m achieving something, instead of putting my life on hold until I’m better. There’s still life happening, and I get to be a part of it — and living it — even from my cabin. 

Anchors on Dark Days

Having something on the horizon fuels hope. The hope that whispers to me during my darkest moments refuses to let me give up. And I’ve learnt that hope doesn’t have to be big or Instagram-worthy. Its shape doesn’t have to be a cruise ship, or a plane ticket, or a passport stamp. Sometimes, it’s something much smaller. I find it during an impromptu lunch with a friend. A new book that I’ve been waiting with bated breath to read. A film I’ve been wanting to see. A day where the pain eases just a little.  A new show to binge when the fatigue won’t let me move. These are my anchors, too.  

"I’ve learned that hope doesn’t have to be big or Instagram-worthy. Sometimes, it’s just a good book or a moment of quiet relief." Share on X

They’re small lights on dark days. The glimmers that remind me that joy still exists; there are still things to feel curious about, to anticipate, to delight in. That despite everything – the limits, the grief, the story seas – my story is far from over; the horizon still calls to me. And I’m still sailing toward it.

Norway on the Horizon

Just as I once stood in the shadows of castles and sang beneath museum lights, soon I’ll sit with a blanket draped around my shoulders, watching the Norwegian fjords drift past. Already, I hear the call of Norway summoning me. It’s a journey that I’ve etched into my calendar not just as a trip, but also as a promise. A promise that I can still find beauty in the world, even after all the dark, difficult days. I can already picture the majestic fjords rising from the mist, the hush of the water beneath the ship, and the quiet majesty of it all. I imagine myself there, wrapped in a blanket on the balcony, breathing in air that tastes of something new. It’s not about escaping my illness — I’ll carry it with me, as always — but it’s more about carving out space for wonder.

For two weeks, I won’t just be surviving, I’ll be living. I’ll watch waterfalls cascade down ancient cliffs and feel reminded of how much life I still have to live. The cruise isn’t just a destination — it’s my lighthouse. It’s my reminder that illness may take much, but not everything. That, despite the dark, monotonous days of pain, fatigue and all the rest, there is still room for joy and wonderment. 

"Hope is my lifeline. The thing that whispers 'not yet' when the weight of illness says 'give up'." Share on X

Toward the Light

Though the storms of chronic illness still rage, hope and chronic illness remain intertwined in my story. That light on the horizon reminds me that I’m still sailing – still living, still dreaming, still moving toward moments of joy.

"Chronic illness may take a lot, but it hasn’t taken everything. I’m still here — still living, still hoping." Share on X

What anchors you when the storm hits? What gives you something to look forward to?












"Although I'm on disability now, I never feel safe that I'll be able to keep them. And the threat of reassessment constantly looms over me." Share on X
"I've already proven to the powers that be that I'm disabled. So, why must I do it all over again to keep the benefits I need?" Share on X

The Humiliation of Divulging Details of My Weak, Faulty Body

"The constant need to assert my deficits to strangers trained to doubt me and who don't know me or understand my disability feels unsurpassable." Share on X
"As I write, I try not to cry or swear as I fight feelings of inadequacy. I feel less than as I confess to a faceless bureaucrat to everything my body no longer allows me to do." Share on X "The constant need to justify my existence is traumatising, exhausting and stressful. And it often feels that the system's designed to make us feel this way." Share on X
Filling out benefit forms is a stressful and demoralsing experience
Photo by Ryutaro Tsukata: https://www.pexels.com/photo/man-writing-with-pen-on-paper-6249385/

Why I’m Hesitant to Admit to The D Word

"It's heart-wrenching to hear the increasing vitriolic language toward people like me. Words like faker, burden, or drain on society scream at me from stories and tweets on my screen." Share on X "I shy away from using the D word: disability, as in, I'm on disability when asked what it is I do. Shame immediately set in whenever it has, as any self-worth I had disappeared into the abyss." Share on X

Being Sick is Not a Lifestyle Choice

Benefits: Being sick is not a lifestyle choice the government claims it is
"I didn't work hard for three years for a degree to spend every day hidden behind the same four walls. Instead, looking at the certificate I worked hard for, gathering dust is painful, taunting me about what could have been." Share on X

It’s Not All Endless Free Time and Fun

"On the one hand, home feels like a sanctuary, a safe place. On the other, it feels that the symptoms that plague my every waking moment continually hold me hostage in a prison I call home." Share on X
Stigma of Benefits: Home is my source of comfort. But my sanctuary can also feel like a prison

The System Makes Me Feel More Like a Criminal

"The stress of the claims process is worsened by a system that treats me like a criminal. Like, I've had to attend a tribunal in an actual court with guards and judges to prove the existence of my disability." Share on X

In The Darkness & Behind Closed Doors

Life with a neurological condition is spent in the darkness.

We live with the symptoms behind closed doors.

Behind closed doors where no one can tell how much pain we are in, or the suffering caused by the many other symptoms that comprise our everyday life with chronic illness.  Our days are spent behind closed doors living with these symptoms.  When we do go out, we do so behind a mask.  A mask that consists of make-up to conceal the effects of living with illness every day.  Effects such as dark circles under the eyes and a general pale complexion that make us look ill.

We live with chronic illness in the darkness. We live with the symptoms behind closed doors. Share on X

But we don’t want to look ill; it’s more than enough to feel so every day as it is.  And so, we don our mask to conceal our ‘sick’ identity.  However, the masks we wear only often leads to suspicion from others who know us.  They are unable to fathom how we can still look ‘good’ and yet claim to be chronically ill.  Many believe we must be exaggerating our symptoms to gain sympathy and attention.

But we don't want to look ill; it's more than enough to feel so every day as it is.  And so, we don our mask to conceal our 'sick' identity. Share on X
woman holding hands over eyes
Often neurological conditions come with pain; pain that is can be constant and unrelenting

But they can’t see.  Nobody can see the destruction that living with constant and relentless symptoms has on our bodies and our ability to function in the world around us.

Life With A Neurological Condition: Pain Often A Constant Presence

This week, in particular, has been hard; the pain has been my alarm clock.  Today, for instance, I woke just before six o’clock, sleep interrupted by a wave of crippling pain in my legs.  Pain that feels like legs trapped in a vice that refuses to loosen. Pain has not only been disrupting my sleep but has also been keeping me up late into the night.  Nights where the pain has been my only companion.

But Pain Is Not Always The Source of Frustration and Despair

As a result of my diagnosis, it is not only pain that torments my legs.  I also endure stiffness and weakness in both of them.  As a result, it takes a considerable amount of energy to get out of bed.  Once I do; however, my legs give way, and I end up in a crumpled heap on my bedroom floor. Unable to do anything else, I manage to haul myself up back into bed.  In bed, I burrow beneath the warm duvet, which provides comfort and security from the cold, which only seems to aggravate the already horrendous pain. Incapable of doing anything else, I catch-up with the world I am currently unable to be a part of via social media, or watch funny videos on YouTube to in a bid to distract me from the pain and trembling that is ravaging my legs.

laptop in bed in the dark
The internet, social media such as YouTube can be a great distraction day or night when symptoms are at their worst

Eventually, usually after a couple of hours of resting, I can get out of bed and continue with my day.  Often, more often than I’d like to admit, I go without breakfast, my stomach protesting at the very thought of food due to nausea.  On days, I can manage to eat, I grab a breakfast bar, something quick and easy and requires no preparation.

Life With A Neurological Condition: The Invisibility

By looking at me you would not believe that anything was wrong with me, however, for me, it feels as though my legs are working overtime to be able to do everything that others take for granted. Taking a shower, getting dressed, doing household chores and preparing meals is extraordinarily challenging. The continual trembling of my legs, it can feel as if they are no longer strong enough to be able to support my body.

There are not enough words to adequately describe the weakness and fatigue I experience when continuously living with pain and trembling.  Everything is a struggle, and as such, forced to take breaks in between having a shower and getting dressed.  Or between chores that need doing around the house.  Just standing is problematic for me because of the continual trembling, feeling as if I’m attempting to balance on jelly. On the worst days, being able to achieve anything at all is exceptionally challenging.

With a body that can do very little, my day consists of resting on the sofa or my bed in my sanctum watching one of my many TV boxsets or an uplifting film on Netflix.

With a body that can do very little, my day consists of watching one of my many TV boxsets. Share on X

The scenario above is a small snapshot of a typical day.

Life With A Neurological Conditions: Days are Unpredictable

However, as anyone living with a neurological condition can attest, there is nothing typical about our days.

Our days are unpredictable; no two days are exactly alike…Things can change instantly. Share on X

Our days are unpredictable; no two days are exactly alike.  Even minute by minute, things can change instantly.  I can feel fine one minute, and suddenly I am lying on the floor after my legs unexpectedly give way.  Or a sudden bout of vertigo overwhelms everything, knocking me off balance. I found a quote from an old blog post, that resonated with me.  It reads “Life with a chronic illness can change instantly within a blink of an eye, one minute the symptoms are in the background, calm and peaceful…and the next they are wreaking havoc upon your body and impacting your life and routines.”

quote from blog crashing violent waves background

The Unknown Of Life With A Neurological Condition

The quote sufficiently describes life with a neurological condition.  Plans for going out or accepting invitations to weddings or other social gatherings are problematic to accept.  Why?  Because we are unable to check our diaries, unable to discern how we are going to feel on a particular day. Never knowing the state in which our bodies are going to be on a specific day.

One minute the symptoms are in the background calm and peaceful…the next they are wreaking havoc. Share on X

We are in a constant state of being stuck in the ‘unknown.’

The road ahead of us contains only a giant question mark.  Not knowing what lies ahead of us tomorrow, next week, next year or even further ahead in regards to our health.

Being chronically ill we are in a constant state of being stuck in the 'unknown'. Share on X

But unlike most people, we in the land of the sick learn to love every second, every minute, and every hour, of any of those good days because we know that the bad seconds, minutes, hours or days may be just around the corner.

As unpredictable as life with a neurological condition may be, however, our lives are still an adventure with infinite possibilities waiting for us to explore.

Thank you so much to Robert from A 30 Minute Life and Jen from Tripping Through Treacle for nominating me to take part in this brilliant quote challenge!

Anyone who knows me will know that I love quotes and positive affirmations to remind me of the beauty that exists in the world despite the darkness and all of the terrible atrocities that happen all around the world.  As someone living with chronic illness and who regularly struggles, bombarded with many different symptoms, quotes are a helpful reminder that there is still good that exists in my life, and the bad days will pass, making room for days full of joy and positivity!

The rules for this challenge are as follow:

  • Thank the person who nominated you
  • Post a quote for 3 consecutive days (1 quote for each day)
  • Share why this quote appeals to you
  • Nominate 3 different bloggers for each day

[Tweet “For I’m not afraid of storms, for I’m learning how to sail my ship”]

 

‘Little Women’ has always been one of my favourite novels, having read since I was a young girl.  This beautifully written novel has always spoken to me, being able to relate to the struggles of each of the four siblings at different times of my life.

It has always been one of my favourite quotes from ‘Little Women’ book, serving to remind me that although storms elicit panic and fear, these are the conditions that we often learn the most.

For me, living with a neurological condition, the many challenging flares that I’ve experienced has only sharpened my awareness of the coping strategies that best help manage the symptoms, and in turn, helping when the inevitable next flare strikes, making the storm less severe, and me better at handling the rough waves.

My nominees for today are:

After Mum and I enjoyed a spa break for my 30th birthday, we decided that whenever we had time, we would book a spa day for us both.  Unfortunately, due to unforeseen circumstances, we have been unable to enjoy a spa day together for almost a year. But with my impending birthday, we thought that it was time for some much-needed R and R.

Excitement and anticipation soon start after phoning our local spa, for a day pass. The pass includes one of their luxurious treatments and a heap of other benefits. Benefits which include full use of the spa and leisure facilities, two-course lunch buffet and complimentary towel, robe and slippers.

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A spa day is a lovely and relaxing treat for anybody, but especially those with a chronic illness

A relaxing spa day is a sublime treat for both myself and the person with whom I’m going. And provides something to look forward to beyond the daily life of managing unpleasant symptoms like chronic pain.

A spa day is something to look forward to beyond the daily life of managing unpleasant symptoms like chronic pain. Share on X

However, not only is a spa day something lovely to look forward to. But as someone living with chronic illness, I have found that I benefit immensely from it.

And I think a spa day would be beneficial for those living with chronic illness; and here are some of the reasons why:

A SPA DAY ALLOWS YOU TO SPEND QUALITY TIME WITH LOVED ONES

Before my symptoms became disabling, my Mum and I loved nothing better than to travel to Cardiff. To spend the day together for some retail therapy, and perhaps even take the opportunity to eat out.

However, now as my mobility has worsened, my legs so weak that they give way easily and with no warning.  These days out together are no longer possible, not only because of the debilitating physical symptoms but also due to energy limitations.  I just don’t have the energy to do these type of high-energy activities anymore.  Not without paying a hefty price afterwards. Punishments such as a significant increase in the severity of the symptoms I already have to endure.

Like many of us living with chronic illness, it means that I often have to miss out on social gatherings. Something that is one of the most upsetting and frustrating things about living with a long-term health condition.  However, a spa day allows you to spend quality time with a friend or loved one. One that is thoroughly relaxing and low-energy, perfect for those of us with chronic illness

A spa day is thoroughly relaxing and low-energy, perfect for those of us with chronic illness. Share on X

SPA DAY: BEING ABLE TO UNWIND, DESTRESS AND INDULGE IN SELF-CARE

Like many others living with chronic illness, the condition and its constant and unrelenting symptoms cause me stress.  And never more so when I am experiencing a severe flare, much as I have done recently.  By going on a spa day, however, gave me the opportunity to escape the day-to-day stresses of living with chronic illness. Providing an opportunity to unwind and relax.  As all of us are aware, stress can often exacerbate our symptoms; by going on a spa day, it allows you the opportunity to focus on you and your needs.

A photo of the Relaxation Zone at the Vale Spa in South Wales

Like osmosis, the calm and relaxing atmosphere of the spa itself seeps into my body making me calm and relaxed despite any pain or discomfort I’m experiencing.  Hell, I become so relaxed that I end up catching on any missed sleep in one of the Relaxation Zones. Bliss!

By going on a spa day, it allows you the opportunity to focus on you and your needs Share on X

THE TREATMENTS ON OFFER ON A SPA DAY CAN HELP REDUCE CHRONIC PAIN 

There are a variety of treatments and massages on offer in spas like the one I frequent.  For those who can tolerate touch, as some suffering from allodynia would not benefit from such treatments.  One of my favourite treatments is the aromatherapy massage. But a hot stone massage may also be beneficial for those suffering from chronic pain. Research has found that the therapy eases muscle stiffness, increases circulation and metabolism. It also increases blood flow throughout the body as the hot stones help to expand blood vessels.

Furthermore, massages have also been found to release the same ‘feel-good’ endorphins that you get from working out.  The release of endorphins acts as a natural pain reliever.  The more your body produces these endorphins, the quicker it learns how to release them.  Therefore, regular massage therapy helps to stop the buildup of toxic blockages that hinder the flow of oxygen around the body causing pain and inflammation and to also help the body’s response to it.

spa-day-massage

An aromatherapy massage as well as having the same benefits as listed above is also said to ease headaches, improve sleeping problems, lowers feeling of anxiety and improves mood.  The practitioner can tailor the aromatherapy oils depending on you and your symptoms.  During a previous massage, peppermint oil was used on my body, including my stomach. I found that this really helped ease nausea I experience as a side effect of the medications that I take.

I also love having a facial, which is just as relaxing as any of the other treatments already mentioned. Afterwards, my skin is glowing making me look healthy and radiant. A natural healthy glow instead of the pale and unhealthy complexion which has become my norm. And when I look good, I also feel good.

THE HEALTH BENEFITS OF THE OTHER FACILITIES ON OFFER 

As well as delivering ultimate pampering treatments, most spas also have jacuzzis, saunas, and steam rooms to use during your stay.  Jacuzzi’s are excellent for those like myself who suffer from neurological conditions. The warm water decreases joint stiffness, normalises muscle tone, as well as promoting muscle relaxation all helping to relieve pain. I love spending time in the spa’s jacuzzi, and feel relaxed and rejuvenated doing so. And experiencing a reduction in the amount of pain I am experiencing.  I find it so beneficial that it’s difficult getting me out of there!

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There are plenty of benefits for using jacuzzi’s and steam room, both popular in spa resorts

There are also many benefits of using saunas and steam rooms.  Saunas, for example, are great for detox, as sweating is one of the best ways to remove toxins from the body.

Saunas and steam rooms are although not suitable if suffering from heat intolerance which many suffering from neurological conditions do.  However, even a few minutes in the steam room or sauna can be beneficial. In addition to detoxing, they may also help to reduce inflammation and pain.

sauna-spa

Furthermore, it’s important to reiterate that spending time in hot water and facilities such and saunas and steam rooms can be as good as exercise.  Great news for those who find exercise difficult because of their condition. But it is still important to pace yourself especially for those who struggle with fatigue.  Also, if you have a high blood pressure than you need to consult a medical professional as it may be unsuitable.

A SPA DAY: NO PRESSURES AND A DAY OF NORMALITY 

We all have pressures in our lives whether it comes from work, family, or friends.  When living with chronic illness, we may often feel pressure to do things that we might not feel physically able to do, others not understanding why we can’t because we look healthy on the outside.  Them not understanding how we can still be in pain, or feel so fatigued.

A significant advantage of a spa day is that there are no pressures from others or any need to places any burden on ourselves to do this or that because we feel we should be doing something than resting and looking ourselves. On these days, there is nothing to do but care for ourselves, listen to our bodies and instead do what we need to for us.  A day not continually checking social media, and worrying about what is going on around us.  A day just for us.

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A DAY IN WHICH THE LIMITATIONS OF CHRONIC ILLNESS DO NOT DEFINE ME

At the spa, I feel completely safe and at ease in the environment, which is not always the case because of my neurological condition.  But there, I can take everything at my own pace, even being left alone in one of the relaxation areas while my companion goes to another part to do what they want. It’s, in fact, a spa day is one in which I almost feel ‘normal,’ a day which I am not defined by the limitations of my condition. A day with no ‘I can’t’ and being stopped by the symptoms that I endure because of said condition.  All there is to do is lie back, relax and enjoy!

…I almost feel 'normal, a day which I am not defined by the limitations of my condition. Share on X

There are just a few of the many reasons why a spa day can benefit for those living with chronic illness.  I always come away feeling tired, but still incredibly relaxed, happy and even in less pain.

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My local spa has become a ‘happy place’ to me

I definitely feel and enjoy the benefits of a spa day and would recommend it to anyone.  Plus, it provides a fun and relaxed day out. One that I can actually enjoy and feel comfortable in my surroundings, and allows me time to spend with Mum away from home. I cannot wait until our next day whenever that will be!

Have you tried a spa day?  What did you think?

Let me know in the comment box below or let me know via social media!

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