Tag

vertigo

Browsing
In Chronic Illness

The Invisible Fight of Invisible Illness

No Comments

Imagine walking down a busy street.  Look at the faces of the people walking past you in the street. Every one of those people will currently, or at some point in their history has faced a battle. One of them may be living with a battle that I currently face; a battle of living with an invisible illness.

Invisible Battles, Known Only To Those Fighting Them

Some of these battles may be visible, detectable to others, eliciting empathy and compassion.  Other conflicts, however, are invisible; concealed from everyone else, like a deeply hidden secret – a struggle known only by the person carrying the burden of the fight.

There are so many fights when living with an invisible illness
Be kind; for everyone you meet is fighting a hard battle.

I am one of those people who is fighting an unseen, invisible fight.  If you were to see me, you would never know that I have a neurological condition — the only signs being when I am staggering along with my crutch.  Or on the days where weak legs confine me to the use of a wheelchair, even then I am met with stares silently asking why I need such aids.

"I am one of those people who is fighting an unseen, invisible fight—an invisible battle of living with an invisible illness." Share on X

For Me It is Not An Invisible Illness, It Is My Life

The personal fight I face as a result of my neurological condition although may not be visible to others, for me, however, is very real.  For me, it is not an invisible illness; it is my life.  Every step is a struggle, with legs trembling so much that it feels as if they will buckle, although no one can see.  For others, the world is still, unmoving.

The world in my experience, however, seems off-balance. As though everything is slightly tilted. At other times it seems as if there is constant motion.  Every day I fight against fatigue and for the ability to do everything that everyone often takes for granted. Such as being able to go shopping, take a shower or cook a meal for the family.

"For me, it is not an invisible illness; it is my life." Share on X
Living with an invisible illness is often a balancing act between surrendering to our symptoms and fighting against them
“Living with an invisible illness is often a balancing act between surrendering to our symptoms and fighting against them.”

Every day is a battleground between myself and my body.  Like with any battles in history, there are times I am forced to surrender. Such as those days when my legs are so weak. Or the dizziness so severe that I am unable to get out of bed.  The days I am forced to surrender to my condition and stay confined to my bed.  That’s the thing about living with a chronic illness; it is often a balancing act between surrendering to our symptoms and fighting against them.

"Every day is a battleground between myself and my body." Share on X

The Fight Against The Assumptions of Others

It is not just the symptoms that we have to fight.  We also have to fight against the judgements of other people regarding our long-term health conditions.  At the start of our chronic illness journey, people greet our new circumstances with understanding and compassion, friends and family make allowances for our limitations.  As time passes, however, the understanding and compassion dissipate, replaced with frustration.  Frustration at us still not being well enough to go out and take part in activities we used to before illness took over our lives.

The grievance at the chores still left untouched as illness still will not allow me to attend to them. My parents, although supportive and understanding will sometimes feel embittered at finding certain chores untouched. Some days have to be waived for a day on the sofa due to debilitating and unrelenting symptoms. And they are unaware of this as to look at me, you only see a healthy woman.

To Live With An Invisible Illness Instead of Surviving

It may seem that the neurological condition takes a significant amount of space in my life; it, however, does not own or control me.  Yes, it may borrow my life at times, restraining me to the four walls of this house I live in, but the condition does nor ever will take my entire life.  There are certain things that I am unable to do because of this condition. Particular baggage that it has created, but there are still plenty of other things that I can and have done that I can still do.

The Fight of Invisible Illness
A profound quote from Tangled!

This unseen condition may fight for control for every facet of my personal life.  Now, however, I have chosen to fight back. Although I have not won control for every area of my life, I have elected to manage aspects of my life that I do have control over.  I have chosen to live side by side with my condition instead of merely enduring life with it.

I choose to live rather than simply survive.

'Fight Song' is an empowering one for those living with invisible conditions
‘Fight Song’ is a song that is on my self-care playlist
"I have chosen to live side by side with my condition instead of merely enduring life with it." Share on X
by
Keep Reading
In Chronic Illness

The Longest Ride…of life with Chronic Illness

No Comments

Living with chronic dizziness is hell.  The unpleasant sensation of having your whole world constantly moving even when still takes everything away from you.

Your friends, social life, independence, career plans to name but a few are lost when chronic illness strikes.

Long-term illness pecks away at your identity; taking pieces of things that make you-you: the friends you meet, the places you like to socialise and your hobbies and interests.

For me, living with this neurological condition has taken a lot, and one example of something that it has taken for me is being able to go to the cinema and watch a film.  High ceilings, flashing strobe lights, fluorescent lights are just a few delights that can worsen the severity of the dizziness that I endure constantly.  Furthermore, they can also be triggers for other symptoms associated with the brain stem lesion such as vertigo and visual disturbances.  As someone who loves films this is an incredible loss; I mean sure, I can still watch them at home but there is nothing like going to the cinema and watching films on the big screen, is there?

A couple of weeks ago, however, saw the release of the new Nicholas Sparks film ‘The Longest Ride‘ and as a fan of his books and the adaptations that have been inspired by his works, I just had to try and push myself to go and see the movie.

My ticket for a showing of 'The Longest Ride'
My ticket for a showing of ‘The Longest Ride’

As a result, my carer and I attempted for the first time in several years to visit the cinema.  And I am happy to say that I managed it; successfully staying in the theatre to watch the entire film.  I would love to say it was easy, but like everything with living with a chronic condition, it was not.

The dizziness at times was so severe and my vision kept becoming blurry.  All my instincts was telling me to leave and go somewhere my symptoms although would still exist, would be less severe.  But the love of the film, and the beautiful story that unfolded during the two hours (and was also helped by the gorgeous Scott Eastwood).

The film was a beautiful love story about love itself but also the sacrifices that are made for it.

h-HO00000689
This achievement may seem like a very small feat given the fact that going to the cinema is an activity that many people partake in every day.  Healthy people often take being able to go to places such as the cinema for granted as for me living with a neurological condition, it was a big a challenge as someone attempting to scale an enormous mountain.  So, for me personally this was not a small feat, it was a huge win for me in the conflict that chronic illness has created inside my body.

During the course of watching the film it was not only dizziness, vertigo and the visual disturbances I had to contend with but also severe neuropathic pain in my legs (not helped by the lack of leg room) and the trembling in the legs made it difficult even being able to physically walk to the cinema itself.

I was thinking of the film long after it ended, and kept thinking of its title ‘The Longest Ride’.

For me, the title was defined by the enduring love between the two characters, Ruth and Ira.  But it also got me thinking about its meaning in my life.

Living with chronic illness in itself is a long ride.  The term itself is clear of this as the definition of the word can be used to refer to an illness which persists for a long-time or is constantly recurring.
From the onset of symptoms, living with a chronic illness is a long ride, consisting of endless doctor’s and hospital appointments, persistent and recurring symptoms (and often the onset of new ones) as well as the ceaseless days of feeling frail and sick.

Imagine an extremely long and persistent road, well, living with a long-term condition is often like making the long ride down this road, and which often feels like there is no end.  The journey towards diagnosis is even a long ride itself, with repetitive appointments with consultants leading to disappointment as medical tests fail to answer the one question we want answering – what is wrong with me?

Living with chronic illness can often feel like travelling on a long road with no end in sight...
Living with chronic illness can often feel like travelling on a long road with no end in sight…

And even after the diagnosis has been confirmed, chronic illness allows the long ride towards not only acceptance of the diagnosis but also to learn how to live with and manage the symptoms of said chronic illness.

Thinking back to the film, and the gargantuan achievement of going to the cinema despite experiencing such unpleasant symptoms that for one makes it extremely difficult to sit and watch a film but also has previously stopped me from enjoying such perks as trips to the cinema, has made me realise that we should not allow our conditions to take full control over our lives.

Yes, chronic illness is bound to take pieces of our old lives and identity and change them, however, we should not allow our illness to stop us from doing things that we love.

Yes, the cinema trip was demanding on me physically, affecting me even days afterward, experiencing a flare in severe symptoms, but it was still worth the trip.

Not only did I manage to watch a film that I desperately wanted to see, but I also defeated my condition reminding me that I am stronger my condition.

Now, I just need a little reminder of the film and the cinema trip to pin to my positivity board to serve as a reminder of the defeat over the dizziness and my neurological condition/  I was thinking of a postcard of the film poster or something so if anyone has any ideas or anything please get in touch!

And if any of you, love romantic films then I would thoroughly recommend ‘The Longest Ride’.

by
Keep Reading
In Chronic Illness

HAWMC Day 22: Finding Sanctuary Amidst the Chaos of Chronic Illness…

No Comments

306201_10150737754389254_1241404170_n

Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon given prompts.

Wednesday 22nd April: Hobbies 

Running and 3PM dance parties are some of our favourite hobbies at WEGO Health.  Tell us, what are YOUR hobbies?  Love to crochet?  Can’t stop collecting rocks?  Take photographs of everything?  Share your favourite past times.

Sitting here preparing the post for today, I feeling particularly bad due to the symptoms I experience as a result of the brain stem lesion.  The dizziness and vertigo are making it difficult to do anything due to the severity, and the trembling in the legs is so bad that it has already lead to several falls, and it’s only early afternoon.

Today’s prompt above asks us to write a post about our favourite past times that makes us happy and provides us with a respite from life with chronic illness.  This is a post that I have already written during a previous #HAWMC and which you can read here.

Instead, I have decided to write a post about the little practices and routines that help me during a particularly bad flare.  By doing so, I not only hope to help others who may find comfort in these during their own relapse, but also by reminding myself of the little things that give me comfort and pleasure even during the bad days, I can also help myself in the process.

An important aspect of living with chronic illness, is in my opinion, having your own personal sanctuary; for me, this is my bedroom.  My little haven where I can go to escape from the stresses of everyday life, and where I can receive comfort when chronic illness is beating me.  It is also an homage to me, filled with everything I love.

I love butterflies, as they are a symbol of hope and change, and as a result there are a lot of decorative touches with butterflies throughout my room.  The space therefore, for me is not only comforting but is also a space where I would love to spend a lot of time, which for someone living with chronic illness is vital.  Little touches such as soft and luxurious cushions also gives comfort for the times when there is a need to stay in bed for long periods.  I have also added things like inspiring quotes and affirmations throughout my room, cards pinned to my positivity board, prints hanging on my wall, or on little trinkets to keep in my comfort box.  Including these affirmations and positive quotes in my personal space, is a reminder that despite the struggles faced as a result of chronic illness, things however will get better.

Some inspirational quotes

Furthermore, living with chronic illness and as a result spending most of the time at home can lead to feelings of isolation and loneliness.  Making new friends and maintaining existing friendships can be difficult.  As a result, I have used the internet and social media to meet other people also living with chronic illness, and have even made several pen pals.  Writing is something that I love, and so using this hobby, I write letters and cards to others who are also struggling in the hopes to help lift their mood.  By helping someone else, it also helps to lift my spirits also, and is reciprocated by lovely and thoughtful cards dropping on to my doorstep.

When it seems that chronic illness is controlling my entire life, and due to the severity of my symptoms as mentioned above, a lot of time is inevitably spent in the bedroom, lying down and trying to find any relief.  During these time, I find that entertainment is a vital tool, not only keeping myself occupied but also to distract myself from symptoms such as pain, dizziness and trembling in the legs.  I often find solace in various films and TV shows on streaming services such as Netflix and Amazon Prime.

Recently, I have loved watching episodes of ‘Once Upon A Time’, often watching several episodes concurrently.  During times of painsomnia (insomnia as a result of pain), I also find watching films or TV series on my tablet to occupy my nights without disturbing anyone else!  Books are also fantastic distraction tools, as they often pull you into the story, that you lose yourself in the plot, forgetting about everything else.  Audiobooks are a great alternative when symptoms makes it difficult to physically be able to read.

Addictive viewing amidst a bad flare in symptoms
Addictive viewing amidst a bad flare in symptoms

As mentioned in earlier posts this month, colouring books are the new craze and one which I have bought into.  They are incredibly relaxing as it helps the mind focus on the present and not on any stresses that may be troubling an individual.  I have found it particularly effective in helping to distract my mind from the pain in my legs.  I love the intricate patterns and detail that appear in the adult colouring books, which are coming popular and provides you with some artwork to decorate your living space! I also enjoy other craft projects such as making cards, and sometimes even a go at jewellery making.  Also, a great way of being productive amidst being physically incapacitated by symptoms.

Painting my nails is just another hobby and activity that I like to do during the bad times as a result of chronic illness.  Living with a variety of symptoms affecting the body, and even sometimes noticing physical changes, as a result, can be difficult and lead to issues surrounding body image.  For me, living with constant trembling in the legs, and very often in the hands can be miserable and very uncomfortable, noticing small tremors in my hands serves as a physical reminder that there is something very wrong with my body, so to make me feel better, I like to paint my toe and fingernails some bright and bold colours puts a smile on my face and makes me feel better and more confident about my appearance despite these troublesome symptoms.

20140920_165005

by
Keep Reading
In Chronic Illness

HAWMC Day 5: No such thing as a small accomplishment when living with chronic illness…

No Comments

531000_10150773237874254_36556179253_11327993_607059728_n Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon given prompts.

Sunday April 5th: Breaking News  The top story of today is…YOU.  Share with your readers your proudest accomplishments in the last 5 years.  Don’t be shy, tell us everything!

It often feels that chronic illness robs us of our lives.  As a result of the debilitating symptoms we constantly live with, the majority of our time is very often spent inside the safety and comfort of our homes.  Sometimes much of our time is even spent stuck in bed. It very often feels that chronic illness is controlling us rather than the other way around.  And because of these feelings of inadequacy and grieving over the life we have lost takes place in our conscious thoughts.  I know from personal experience, that very often we feel that because of our time spent living with illness, we have not accomplished anything special, especially when witnessing the many accomplishments and big life events of our friends and family on social media. We forget to celebrate the small victories and accomplishments that we achieve without us ever realising it; sure, they may be inconsequential to an outsider, but fellow spoonies and our close friends and family will know how big these triumphs are, especially as it shows our strength at not letting our chronic illness win and dictate our lives. So, as the prompt asks, I am going to share with you all some of the small victories and accomplishments that I have achieved during the last five years:

  1. Going on a cruise – This is probably the biggest accomplishment that I have achieved.  A lot of people are afraid of the unknown, but as fellow spoonies will relate, this fear can become worse when living with a chronic illness.  So, going on a holiday, and especially a holiday that we  have never been on before can provoke worry. What will it be like?  How am I going to feel during the cruise?  What if I become ill? A lot of questions are raised when going on holiday and a lot needs to be thought of when living with a long-term health condition.  But despite the worry and the severity of my condition at the time, I still went on the fortnight cruise and had a wonderful time

    The magnificent 'Adventure of the Seas'
    The magnificent ‘Adventure of the Seas’
  2. Going to Bath – I am a fan of Jane Austen, so it has been of one my dreams for sometime to go and visit the Bath, a city in which she lived for several years and influenced several of her novels.  And last week, I made it there.  At the time I was disappointed as the trip to the museum was the only visit I accomplished during the time, Mum and I spent there.  The rest of the trip was spent lying on the bed in the hotel as I was too unwell to do anything else.  But looking at it positively however, the trip was still an accomplishment as not only had I visited a new city that I had never been before, but I also visited someplace I wanted to go for sometime.
  3. Going to the Cinema – Due to the dizziness, going to places such as the cinema is very difficult for me, as it’s not only due to the extensive sensory overload which can make the dizziness worse and cause vertigo but due to the neurological condition, I am unable to cope with buildings which have high ceilings.  However, despite this when the film, Les Miserables came out I really wanted to go and see it as it’s one of my favourite musicals.  My carer took me to a smaller cinema, but it was still quite the ordeal and really had to battle against the dizziness and nausea.  Somewhere, despite all of this however, I managed to stay and watch the entire film and so therefore this was quite the accomplishment.BCCY6Z7CcAA0Q7e
  4. Started shopping at Next – Due to the problems with large buildings being able to go and shop in stores located in local retail parks is also extremely difficult, and as a result mostly use online shopping to buy clothes from my favourite store, Next.  However, before my cruise last year, I wanted new clothes to take with me.  So, once again I pushed myself to go in there, it was not easy and often had to leave the store and go back and sit in the car because of the severe trembling in my legs but the determination I had gave me the strength to try and try again.  Now, I regularly visit the store, even if it’s just to look around, and can even push myself to spend more time in there then I previously could.

    It's more satisfying shopping in-store than relying on the internet
    It’s more satisfying shopping in-store than relying on the internet
  5. Visiting new places – A lot of spoonies, I am sure can relate to the difficulty and worry of going somewhere we have never been before.  We spoonies often love the familiar.  Going to towns or cities which we know well is far easier when living with a chronic illness as we know where certain facilities are such as the toilet for example.  For me, suffering with severely weak legs and dizziness I often need to sit down somewhere quiet, and therefore when shopping in familiar surroundings I know where there are suitable places to take a rest.  When going to new places, however, we do not know any of these types of information, so visiting someplace new can cause worry and anxiety but during the past year or so I have managed to push myself to visit new places, which I have throughly enjoyed and although there have been problems such as legs giving way when I have not found any places to recuperate when symptoms flare, I am glad I have given myself the opportunity to experience new places and now have new places I love shopping!

What have been your recent victories and accomplishments?  Celebrate them all – even if they seem small and inconsequential!  Being a spoonie, even getting out of bed and having a shower is an achievement, especially on a bad day!

by
Keep Reading
In Chronic Illness

Struggling with Storms but hoping for a Rainbow…

No Comments

Well, today marks the start of a brand new start month.

The start of something new – whether it be a new day, month or year.

It is like a fresh, white piece of paper, in which the past and everything that has come before forgotten, and instead, we are allowed to start afresh.

To start our story anew.

It opens up new possibilities and opportunities and allows us the hope for a better today and tomorrow (and beyond).

url

And this is most important when living with a long-term health condition.  To live with illness every day is most difficult, and perhaps one of the most challenging aspects of living with a chronic an excellent is the unpredictability of it and the unknown of what each new day will bring.

Even with every little sign of illness such as a headache, for example, brings the fear of the start of new symptoms or even the possibility of a deterioration in our illness narrative.  Therefore, hope is a vital thread for us to hold onto as it allows the possibility of a life without chronic illness and our lives dictated to by our symptoms.

During the recent weeks since my last blog post, I have been trying to remember these points.

As much as I have been trying to remain positive and to hold onto the invisible thread of ‘hope,’ I, however, have been living with the storm clouds above my head.

Just before the beginning of 2015, I had the hope that this will be a really good year.  Don’t get me wrong; I do not have the irrational belief that I would miraculously improve during the coming year.  As I had a few good weeks before Christmas, I did have the hope however that it would be the year that my symptoms would not deteriorate and I would not experience another decline in the severity of my symptoms.

c95d0a8225245e4c5ffc8ab5ad79ecb4

It would seem that this particular thread of hope has unravelled.

In fact, these past few weeks has been the hardest weeks that I have experienced concerning my illness for a long time.  It often feels that my body is taken a severe battering from all of my symptoms.

The dizziness has been so severe, that even doing the simplest things extremely difficult.  The trembling and weakness in the legs have also been very relentless; my legs are feeling extremely jelly-like, that recently I have lost all confidence in being able to visit our local town centre and walking around the shops.  Using my wheelchair is one option, however, due to the severe dizziness and the constant perceived motion that I am experiencing, it would make me feel even more nauseous.

Everyday of late has felt like an uphill battle from the moment I get up out of bed until I go to bed later that day.  Because of the severity of the dizziness, nausea, weakness as well as the increased levels in fatigue, has meant that I often just want to go to bed and burrow myself under my covers and stay there for the foreseeable future.  However, I have not given into my longings and have been pushing myself to still going out, although am finding my trips out have been considerably shorter than previous months.

During my last post, I discussed the feelings of loneliness and isolation that can often accompany chronic illness, and during this recent battle, these feelings have unfortunately only increased.

Perhaps one of the main reasons is not letting anyone in my close circle of friends and family know just how bad things have gotten.  Of those who are in my tight circle of confidants, I have tried reaching out, not getting an immediate response when I actually in need of someone.  It has often only increased the feelings of depression.  Often thoughts of whether I’m liked within my circle friends usually follow, stupid I know but perhaps illustrates how difficult things have gotten recently.

I am trying to think of some ways to widen my social life, and perhaps make way for new friends, maybe even considering the social network Meet Up.

Or setting up a group for those like me who are living with a chronic illness or disability and who are also socially isolated because of it, just a thought in progress at this stage but would love to hear your thoughts and whether anyone has had any success with the site.

At the moment I am dealing with dark storm clouds but still, have hope for the appearance of a bright and beautiful rainbow in the hopefully not so distant future…

RainbowShower

 

by
Keep Reading
Pin It