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Sorry for the recent lack of updates on the blog.  Despite still being active on my social media sites, I, however, have struggled to find the time or energy to write a post for the blog.  I had been experiencing good days during the last posts that I published. Still, unfortunately, as many of you living with a chronic illness will relate to, these good days do not last, and so my health has slowly regressed back and therefore bad days have replaced the good days. And days where life has been anything but a fairy tale.

Finding Solace and Comfort in Films

But, I have found time to watch films that I had wanted to see for some time.

I cried during ‘The Fault in Our Stars’ and enthralled with ‘Maleficent.’

Captivated by the story of the villain depicted in the classic Disney film ‘Sleeping Beauty’ and even more so by the enchanting performance by Angelina Jolie.

A beautiful image of the Cinderella Castle in Magic Kingdom but as experience teaches us, life is anything but a fairy tale

And I was particularly impressed by how Maleficent was not merely a retelling of the fairytale Sleeping Beauty.

Don’t get me wrong, I love fairy tales, my favourite being Beauty and the Beast, but let’s face it, they are all highly unrealistic.

They portray everything as being black or white, or characters being either good or evil.

What I loved about Maleficent, therefore, was the portrayal of the eponymous character as being both good and evil.  Unlike classic fairy tales, the story of Maleficent portrayed various shades of grey.

My Movies TV Google Play
My Movies TV Google Play2

Fairytales: A Metaphor of Life With Chronic Illness?

It then got me thinking of life with chronic illness.

If we were in a fairy tale, our illnesses would play the character of an evil beast.  Illness becoming the role of a villain, much like Maleficent in Sleeping Beauty or Ursula from The Little Mermaid.

Our lives would be darkened and ruined by the beast that is inside of us.

Every day would be bad with no room for happiness, sunshine or joy.

However, just as real life is not merely black and white; I choose to believe that the experience of living with a chronic illness is more like the portrayal of Maleficent; no one thing is purely good or evil.

But life, and especially life with a chronic illness, is anything but a fairy tale.

Chronic Illness: A Hero Or A Villain?

I believe that even living with something as tricky as a chronic illness; there are a lot of different shades of grey.

There are good times despite living with chronic illness, even though the ‘sick’ days heavily outweigh the good ones.

"There are good times…even though the 'sick' days heavily outweigh the good ones." Click To Tweet

I also choose to believe that chronic illness can be both a hero and a villain, much like Maleficent.

It may sound strange to describe a chronic illness as a hero. Many would not think of such a title given the severe and debilitating symptoms we have to live with because of it.

However, chronic illness can also have a positive impact on our lives. It can teach us things about ourselves that we might never have known.

Chronic illness can also give us the strength and resilience to overcome many obstacles and limitations that our conditions create.

Furthermore, we can also become more empathetic and understanding as a result of our struggles with illness.

The Lessons That Chronic Illness Can Teach Us

Living with a long-term health condition can teach us some invaluable life lessons. Ones that we may never have learned if it wasn’t for illness. Such as the importance of learning to slow down and learning to appreciate the small things in life.

The severe and debilitating symptoms of chronic illness is the predominant reason that it plays the role of villain in our lives. But the lessons it teaches us proves that it can also play the role of a heroine.

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Classic fairy tales have stereotypically portrayed us, females, as rather feeble and fragile. And in of rescuing by a handsome and athletic Prince

Modern Disney films, such as Mulan and Frozen, for example, have shattered these archetypes. They have shown that females have the strength and power to rescue themselves from the trials and tribulations that life has thrown at them.

My experience of living with a neurological condition has taught me of our abilities to rescue ourselves from our battles in whatever form that they take.  Doctors, medications and other treatments for me and many others can only do so much.  It is often down to us as individuals to self-manage our conditions. As well as finding little ways to help ease our symptoms or that which makes us feel better emotionally.

"Chronic illness has taught me we all have the power to rescue ourselves from our battles." Click To Tweet

It is up to us to save ourselves from the depression and emotional pain that can result from living with a long-term chronic illness.

It is our responsibility to make sure we are happy and live the best life we can, regardless of the limitations upon us due to chronic illness.

Life Is Anything But A Fairy Tale

Classic fairy tales and Disney films are renowned for their ‘happily ever after’ and as we are all aware, in real-life, and especially a life with chronic illness happily ever after merely does not exist. Life being anything other than a fairy tale.

"There are no happy ever after's with chronic illness…but it does not mean that we cannot be happy." Click To Tweet

It does not mean that we cannot be happy.

However, we need to find our idea of happiness, whatever that may entail.

Happy endings can be difficult to find as a result of chronic illness, but I would like to think that they do exist, but perhaps it means that we have to look that little bit more to find the rainbow through our storms.

Happy endings can be found despite chronic illness but life is still anything but a fairy tale
Happy endings can still be found despite chronic illness!

Imagine you are a marathon runner, struggling at the half-way mark. You are fatigued, suffering from muscle cramps and out of breath. However, you are determined to complete the marathon and cross the finish line.

So, what spurs you onto the finish the marathon despite the pain and fatigue?  I can imagine that one thought that would help is to know that the end is in sight and awareness that the pain and fatigue will eventually end.

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Unlike marathon runners, for those living with chronic illness, there is no end in sight of the pain and fatigue that we endure

Life with an invisible chronic condition, however, is in no way alike to the marathon analogy above.  There is no knowledge that pain, fatigue or other symptoms will end when living with a chronic illness.  There is no finish line when living with an invisible chronic illness.  The question, therefore is if we do not know when the pain, fatigue or other symptoms that torments us will end then what help us get through our lives with a chronic illness?

[Tweet “There is no knowledge that pain or fatigue will end when living with a chronic illness”]

 

In my opinion, one crucial component of surviving life with a chronic illness is hope.

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[Tweet “One important component for surviving life with a chronic illness is hope.”]

Hope that despite living with debilitating and life-altering symptoms, that we can still lead a ‘normal’ and happy life.

Hope that the symptoms will eventually ease.  Hope that one day there may be even a cure.

For those living with an invisible chronic illness, the hope that they will be believed and taking seriously as many as of you will have experienced; many are disbelieving of any disabilities or conditions because there are no outward signs of there being anything wrong.

The hope that everything will be OK.

Hope is essential for every person, but perhaps it is more necessary for those battling chronic illnesses as it is vital for pulling us out of the deep trenches of pain, hurt and depression that living with an illness can cause.

Hope motivates us to push forward and to keep thriving through even the difficult times.  In my experience, when my symptoms are particularly severe and perhaps am stuck in bed because I am unable to get out due to weakness, it can help therefore to believe that tomorrow will be a better day.  Maintaining hope during hardships can make it slightly less difficult to bear.

[Tweet “Hope is what motivates us to push forward and keep living through the difficult times.”]

Before the diagnosis of a chronic illness, we have hope for the future and the plans we create because the possibilities that are ahead of us are endless.  However, after a diagnosis of a chronic illness, there is suddenly a huge question mark over our futures and the possibilities we envisioned for ourselves.

The future is uncertain.  Due to the uncertainty of the future, our faith waivers.  How do we maintain hope when the life we had known has suddenly changed?  How do we continue to hope when we experience more bad days than good?

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The truth is that each moment we are in chronic pain or affected by the symptoms associated with our chronic illness, we choose our attitude towards it.

Ergo, we can choose to be negative and resentful towards our situation. Or we can choose hope and positivity.

I often used to focus on all the ways that my neurological condition limited my life.

Instead of focusing on everything that I am still able to do, I instead focused on the things that I was now unable to do.

This type of cognitive thinking not only can lead to depression and anxiety but can also make you feel inferior to your peers.

Now, I try and focus on everything that I am still able to do, and especially those that give me joy and happiness.

It instills me with hope as well as the reminder that despite the limitations placed upon my life, that I still have things to offer the world.

Anyone reading this who is is living with a chronic illness, know that you still have something to offer and have lots that you are still able to do despite there being things that you can no longer to do.

Illness is hard; there is no doubt about it.  From my experience, I know that trying to maintain hope can be extremely difficult as sometimes it can feel that there is nothing to be hopeful for.

But there are things out there that can be healing; things that can make you feel hope still exists even through the darkest of times.

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Simple pleasures every day can help alleviate suffering from pain, nausea or fatigue.

These little delights do not have to be expensive or grandiose but can be found in the simplest of things, such as watching a favourite comedy, enjoying a cup of your favourite tea, hugging a pet or listening to a favourite album.  Whatever works for you.

Try writing your favourite things down in a notebook; often when living with illness we can forget, and reminding ourselves of the fun activities we enjoy can help bring joy and hope.

To conclude, hope is just one of the components to be able to survive life with chronic illness.

Hope is the line between living a happy life despite chronic illness or being consumed by the negativity that illness can create.

Allowing illness to consume our lives, and focusing on the limitations that it places upon us can, therefore, lead us to lose our identity to our conditions.

As the spiritual teacher Eckhart Tolle said: “As long as you make an identity for yourself out of pain, you cannot be free of it.”

By choosing hope, however, we can lead a productive life filled with the pleasures that heal us and brings us joy and free from pain.

[Tweet “By choosing hope we can lead a productive life filled with the pleasures that bring us joy.”]

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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 prompts given.

Today’s prompt is as follows:

Wordless Wednesday…We all know a picture paints a 1,000 words.  Post/share a picture that relays a message or story to the viewer.

 

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Image found on Pinterest

Living with a neurological can be difficult – at times, it can be bearable, with symptoms although always present, they are however manageable.

At other times, however, symptoms are out of control; life feels as if you are on a battlefield –  your condition and its symptoms are at war with your brain and the rest of your body.

[Tweet “When symptoms are out of control, it can feel you are at war with your body”]

During recent times, my experience living with a neurological condition has been the latter – with symptoms becoming out of control, and everything being a struggle.

I think that what has been particularly tricky recently is because all the symptoms that I experience are out of control all at once.  The dizziness has yet again been very severe, which has left me feeling incredibly nauseous a lot of the time.  And not forgetting the severe trembling and pain in the legs, oh and not ignoring the terrible fatigue; hampered by episodes of insomnia.

Of course, it is not pleasant when even one symptom is out of control but is at least a lot more manageable dealing with one such symptom than several symptoms at once.

So, how do we cope when our conditions are out of control?   How do we deal when we feel at war with your own body?

I have learned that often we need to hold on.  Hold on until it passes.

As I would like to believe all bad times, whether it be because of a neurological condition, another chronic illness, bereavement or even a break-up, passes with time; just as clouds pass over to reveal bright, beautiful sunshine.

I choose to hold on to hope – the hope that it will pass.

[Tweet “I have learned that often we need to hold on. Hold on until it passes.”]

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Choose Hope! My lovely badge from the wonderful Itty Bitty Book Company

But just as much as we need to hold on – hold on to the hope that it will get better; those symptoms will improve given time, we also need to let go.

To let go of everything that we cannot change.

As much as I realise that we should let go of the worry and sadness of things we cannot control; I understand that it is often easier said than done.  I admit that I find it difficult at times, and find myself getting upset with what I cannot do or find challenging as a result of the neurological condition.  However, I try my best to keep the negative thoughts to a minimum and attempt to see the silver lining in the particular situation (e.g., not being able to get out of bed).  I mean, who doesn’t love an excuse to have a PJ day and watch films all day?!) and accept that this is my reality.

[Tweet “We often need to accept the reality of our chronic illness and let go of things we cannot control.”]

There are certain aspects of my condition that I cannot control, such as the symptoms and the effects that these symptoms have on my life.  I do have control, however, on how I choose to deal with the condition.  It is not easy, however, especially when the symptoms are very severe. The way that I choose to deal with this illness is through my writing and sharing my experiences with others, volunteering for great causes, reading books, laughing and talking with friends, and watching my favourite films and television programmes.  Those are some of the activities that I do to make me happy and help me forget that I am a person living with a neurological condition as well as distracting myself from the symptoms that haunt my life every day if even it is for a short time.

[Tweet “There are aspects of chronic illness that we cannot control, but we can control how we deal with it.”]

So, to help me cope with living with a neurological condition, I both hold on and let go!  I hold onto the positives and let go of everything which I cannot control.  How do you cope with the bad times and dealing with a life-long illness? How do you hold on or let go when life is difficult?

 

 

 

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Remember, Alice in Wonderland when she fell down the rabbit hole and found herself in a different world?  Well, recently that has felt like my life.  Except, that instead of finding myself in a world filled with the Cheshire Cat, the White Rabbit and the Mad Hatter; I have instead found myself stuck in world of pain, dizziness, depression, falls and loss of feeling in legs.

No, recently it has not been a happy time, and one of the reasons why I haven’t updated the blog for a while.  Writing in the midst of pain and depression has proved too difficult.  I think, i have also not wanted to wrote about the tough times, as I often worry about sounding too negative and self-absorbed.  However, a good friend recently reminded me that a blog about living with chronic illness should document the bad days as well as the more positive posts.  To keep a blog is to be truthful and to be reflective of life; and life for everyone has its ups and downs, especially when you factor a chronic illness into the equation of life.

The depression crept up on me out of the blue.  I suppose, it wasn’t a surprise that the depression has reappeared; it is only natural, when living with severe and debilitating symptoms for so long,  And the symptoms that have been severe lately has not just been the older symptoms such as the dizziness and weakness in the legs, but the newer symptoms have also been problematic.  Before now, I had only experienced short periods where I have lost all sensation in my legs.  Recently, however the periods with no sensation in my legs, have become much longer; lasting all day even.  For me, it feels so strange and unnerving to feel no sensation, and means that walking is much more difficult as you really need to concentrate and look to where my legs are – and walking become a lot slower than normal!

It was due to the loss of sensation which led to a very bad fall down the stairs, the other evening.  Typical, that I has alone for the night when it happened, having no one around to help me.  Luckily, the fall didn’t result in any broken bones or other significant injuries – just a lot of bruises and a cut on my leg.  The only casualty from the fall, was my Kindle, which now is broken and in need of replacing.  This really upset me, probably more than it would have, if not for the depression.  As many of you know, I have a love of reading, and my Kindle was a lifeline for me on the days where I am unable to get out of bed as it allowed me access to books when I am unable to go to my book shelves.

The casualty from my tumble down the stairs...
The casualty from my fall down the stairs…

However, as the loss of feeling in my legs ended; the feeling coming back, it only resulted in pain, and after the fall, pain like I have never experienced before.

The constant battles with the dizziness and depression; and the battle between pain and loss of sensation in my legs have really thrown me down the vortex and transforming the world that I thought I knew.  But, life with chronic illness can be like that; symptoms disappear and replaced with new ones.  It’s a world that keeps changing.  But hopefully, perhaps one day I can fall down a vortex that leads to my very own Wonderland…

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