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Well, this is my first post for well over a month.  I apologise for my long absence and lack of writing, but unfortunately, once again I have been battling rough seas as a result of the symptoms associated with my neurological condition.

Take my legs, for example, the trembling in my legs at times have felt so violent that everyday activities such as standing and walking have been particularly difficult.

Crippling fatigue has left me unable to function, and constantly finding myself falling asleep throughout the days but still finding myself with no energy no matter how much sleep that I had gotten!

Whilst experiencing these bad days, however, it made me realise the importance of pacing.  Those of us living with chronic illness often report experiencing an increase in the severity of symptoms such as pain, fatigue, dizziness and cognitive difficulties after physical activity, and in particular when these activities have resulted in overexertion.  Doctors have named this phenomenon ‘post-exertional malaise’ and although is often reported in relation to myalgic encephalomyelitis (ME, or CFS) many spoonies living with a variety of different chronic conditions also report experiencing post-exertional malaise.

Preventing post-exertional malaise therefore largely depends on limiting activity to a level that will not exacerbate symptoms.

Pacing oneself is not always easy our limits do not have clear, unchanging boundaries, in other words, we may find we are able to tolerate certain activities on some days but not on others.  Despite this, however, pacing is often regarded as the most appropriate self-management strategy that helps us remain as active as possible whilst avoiding overexertion.

On bad days, therefore we need to limit our energy expenditure to the energy we have available.

Sounds easy right?

But in reality, it is far from easy, as is often difficult to know the amount of energy we actually have to spare, and especially difficult when living with a condition in which the severity of symptoms fluctuate, like mine.  Despite this, however, the importance of pacing and not overexerting oneself to avoid a relapse of symptoms is a lesson that I have been learning the hard way.

Although pacing is important when living with chronic illness, sometimes it is just nice to get out and do something that would be completely normal if it weren't for our chronic conditions
Although pacing is important when living with chronic illness, sometimes it is just nice to get out and do something that would be completely normal if it weren’t for our chronic conditions

Take, for instance, a trip to a retail park that I took with my carer.  A retail park with a plethora of shops to peruse at length.  This particular retail park is quite large and due to the severity of the dizziness of late, it was a difficult trip to undertake but I was determined to push through the uncomfortable feelings and enjoy a day away from the prison that my house had become due to my condition.

Regular readers of my blog will know that when the dizziness is particularly bad as it has been of late, being in my wheelchair is extremely difficult for me and can often make it worse.  As a result, I abandoned the wheelchair and used my two very wobbly legs to make my way around the shops.

The trip was actually a huge success, as after a difficult start due to unrelenting symptoms but despite this and due to my sheer stubbornness and determination I managed to walk around the entire complex.

Retail Park just like the one I managed to visit - take that brain stem lesion!
Retail Park just like the one I managed to visit – take that brain stem lesion!

For me, it was a huge achievement, and although I was proud and enjoyed the day immensely, the days that followed were extremely difficult due to the severe symptoms that arrived days after the shopping trip.  Intense pain, severe trembling in the legs, dizziness and unrelenting fatigue arrived in full force just hours after arriving back at home.  And why?  I had exceeded my energy limit and overexerted my body’s limit.  I had failed to listen to my body and did not use the wheelchair when I probably should have.  And this is not the only example of times when I have failed to listen to my body which resulted in the increase of my symptoms.

Living with chronic illness is often like surfing.  When living with chronic illness, we often find that severe and unrelenting symptoms including pain, dizziness, and fatigue can knock us from being able to successfully live life, much in the same way large and violent waves swipe surfers from their surfboards into the deep waters below.

To live a successful life despite chronic illness, therefore, we must learn to ride the waves of life, learning to use self-management strategies to balance our lives against our conditions, and not let ourselves be overwhelmed by the waves that are our symptoms.

[Tweet “To live a successful life despite chronic illness, we must learn to ride the waves of life.”]

A new bracelet to remind myself to ride the waves of chronic illness and to not let it stop me from living my life
A new bracelet to remind me to ride the waves of chronic illness and to not let it stop me from living my life

So let us all learn to ride the waves of chronic illness and live our lives despite the barriers that it can create.

To not be overwhelmed by our difficult circumstances and create a life that although may be different from the one we envisioned, be meaningful and joyful.

To not be defined by our condition but rather be defined by the successes that we achieve despite it.

 

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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:

If you wrote a book about your life, your community, your condition, or your health-activism – what would you title it?  Come up with 5 working titles.

Perhaps someday I may write a book about my experiences with my condition; certainly as writing is something that I enjoy immensely.  I am not sure whether the book will be of any interest to others however.   So, what are some of the titles that I could call the book that would chronicle the condition in which I live and the experiences that I have had living with it.  Let’s brainstorm:

Well, the first title that I have come up with is the title of this very blog ‘My Brain Lesion and Me.’  What a better title than that of the blog in which started me on the journey of writing and chronicling my experiences with living with the condition in which the book delves into.  The book is also quite self-explanatory and informs the reader straight away about the theme of the book.

Another title that I have brainstormed is ‘A Medical Malady.’  I have chosen this particular title as because of the many generalised symptoms that the brain lesion causes; meant that the condition went undiagnosed for many years.  For many years, I was sent to various specialists in many areas of medicine to try and get to the bottom of the cause of the severe chronic dizziness that I was experiencing.  And when this didn’t occur however, I was labelled as suffering with an anxiety disorder, in which the doctors put all my symptoms as the result of this particular psychiatric diagnosis.  I remember whilst at University and was undertaking a variety of medical tests and hospital appointments, after the dizziness became worse, a friend once said that I needed to see Dr. House from the television programme of the same name, as he would surely get the answers that I needed.  I was a medical malady indeed!

An alternative title could also be ‘Fractured Storms’.  I thought this was an interesting title and one in which is ambiguous; not letting potential readers in on the secrets that the book contains.  I often will pick up books with interesting titles; titles that catch my eye and makes me wonder what the book could be about!  The brain lesion is indeed similar to that of a fracture; of a scar lying within my brain stem and causing the ‘storms’ or symptoms that affect my daily life.  The storms causing symptoms such as the constant dizziness, episodes of vertigo, as well as the spastic paraparesis affecting my legs which results in pain, weakness and stiffness.

Another working title that I have come up with is ‘The Life and Times of a Neuro Patient’.  Again, this title instantly informs the reader of the subject matter of the book, and would be an instant interest for other neurological patients.  After making contact with other patients with other neurological conditions, I have found that there are many similarities regarding our experiences regardless of our differing diagnosis.  Very often people diagnosed with a neurological condition like me, have to wait many months before seeing a neurological consultant.  Recently, I have had to be referred back to the neurological department of my local hospital because of deteriorating symptoms, and have been informed that I have a six and a half month wait to be seen.  This however is not uncommon amongst neurological patients. How I wish that when I was first diagnosed that I could have read a book by someone who was also living with a neurological condition like myself; and whom also experienced similar problems that I was facing. I would have definitely bought a book that was entitled ‘The Life and Times of a Neuro Patient.’ 

And the final working title that I have chosen is ‘A Disequilibrium Life’.  Again, as most of you know, the dizziness and balance problems have long since been with me; ever since I can remember I have been battling dizziness.  Therefore, much of the hypothetical book regarding my life and my chronic illness would document the problems with dizziness, vertigo and balance, so the title should reflect this too.

So, what do you think of these working titles for the book regarding my life and battle with the long-standing brain stem lesion with which I live?  Which title do you like best?

As ever would love to hear your comments/suggestions, so please get in touch and comment below!

 

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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 reads as follows:

Create a Pinterest board for your health focus.  Pin 3 things.  Share the image

 

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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 reads as follows:

Go to http://www.wordle.net/ to create a word cloud or tree from a list of words associated with your condition, blog or interests.  Post it!

 

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But there is more than me than just my illness; so here’s a Word Cloud of some of my favourite interests and hobbies:

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And well done to everyone who correctly identified “I love musicals and my favourite one is Chicago” as the incorrect answer to yesterday’s poll!  I indeed love musicals but my favourite is ‘Les Misèrables’!

 

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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:

Write a health acrostic for your condition, hashtag, or username! (acrostic = a poem where every letter of a word serves as the first letter of a word or phrase i.e. DOG = Digs Others’ Gardens)

 

This has actually been quite challenging for me as I have never written an acrostic poem – and has even been years since I have written a poem…but will give it my best short!  Here it goes!:

Brain is at war,
Ravaging my mind
As well as my body, weakness overwhelming my limbs
It causing my world to endlessly spin
Not counting the endless falling 

Spastic Paraparesis affecting my legs, often sends me
Tumbling to the floor; unable to rise
Enslaved, trapped in this body, not even 
Medications can fix those lines that inflict my brain

Lying does not even cure the spinning
Even when my eyes are closed 
Spinning joins me in my sleep
In dreams, my world is still in motion
Out those damn scars; those lines that fracture my brain; those
Never ending scars that affect my world around me so

 

What did you all think?  A good first attempt?  Feedback always appreciated…comment below!

 

 

 

 

 

 

 

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