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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!

 

 

 

 

 

 

 

You think that you know, but you have no idea what living with my condition is like.  People make snap judgements based upon many different factors such as appearance, body language, posture and so on.

So, I have decided to write a post regarding misconceptions regarding my condition and my life that people may have, inspired by WEGO Health’s ‘True Life Tuesday Blog Party’.

The first misconception has that as I appear ‘normal’, I cannot possibly be disabled.  However hidden disabilities do exist and exist in many different forms – such as mental illness, learning disabilities and many neurological conditions such as my own.  Hidden disabilities can create significant limitations for the person, the only difference is that we cannot see these limitations and barriers as we can with those who are blind in a wheelchair.  Take my case for example, the weakness in my legs are not visible to the outside world, but it does and affects me greatly such as not being able to stand for very long and experiencing many falls daily.

Image: BBC News

“Your dizziness is caused by anxiety; you just need to learn to relax” is one misconception that I have experienced by many people over the years – especially by doctors.  However, although anxiety does play a part as I often felt anxious about the dizziness, which only seemed to magnify the unpleasant symptom even more.  Although relaxation and breathing exercises did help with feeling calmer and less anxious, it did not help regarding the dizziness, and was still very much present in my daily life.  As anxiety and other psychological problems was not the root cause of the dizziness but instead a by-product of it.

“You are constantly falling over, you must be drunk” is another misconception that many people may think when seeing me, as I am often swaying or stumbling and falling over, many symptoms people exhibit when intoxicated.  However, with neurological disorders such as mine and many others, the unsteadiness and constant imbalance is caused by the lesions that exist within my brain stem – causing dizziness, problems with balance, and in my case stiffness and weakness in my legs.  The spastic paraparesis often causes great difficulty with walking, especially when they are weak, as they often just give way from under me with no warning causing falls.

“You don’t look sick, you must be feeling fine” is one which I am sure many people with hidden disabilities or invisible illnesses such as mine often experience in daily life.  People make judgements based solely on appearance – but just because someone may look fine doesn’t necessarily mean they feel good on the inside.  Due to the long-standing brain stem lesion, I experience constant dizziness with frequent episodes of vertigo and consequently often feel very unwell, but as a young woman, when going out I don’t want to look ill, so I use make-up to hide the dark circles under my eyes – to give me a natural healthy glow.

And  my last misconception is based upon glances I receive when I am out using my crutch.  These stares and looks seem to say “Why the hell are you using that crutch, you don’t seem to need it”.  Again, as I am not exhibiting a broken leg or some other sign of injury, I couldn’t possibly need to use an aid such as a crutch, to look at me I look perfectly  ‘normal’ and ‘healthy’ but hiding deep inside are lesions causing imbalance and weakness in legs and so on, often leading to stumbles and falls, and using a crutch makes me feel much more stable when walking.

So, these are the misconceptions regarding my health condition.  Try and imagine a person exhibiting some of the symptoms I experience, are these any other misconceptions or judgements that you might make regarding that person? Would love to hear your thoughts and suggestions…

Welcome to another post for the 30 Days, 30 Posts Challenge as part of the WEGO Health Activist Writer’s Month Challenge. It’s Day 16 and today’s prompt says the following:

Pinboard…Create a pinterest board for your health focus. Pin 3 things. What did you pin? Share the images in a post and explain why you chose them

For those who are not aware, Pinterest is a ‘virtual pinboard’ and allows users to organise and share photographs that they love or inspire them. Users are also able to browse pinboards created by others who share they particular interests and a great way for discovering new ideas. Pinboards allow users to be able to plan special occasions such as weddings, or ideas for decorating the home or for new recipes.

I have signed up to Pinterest and my username is serenebutterfly for those wanting to have a look at my personal pinboard

This is a tough assignment today – my condition is, as already mentioned is invisible, so finding images that reflect my health focus. This is where Google is going to come in very handy!!

1.

Image: http://reference.medscape.com/features/slideshow/vertigo

The above image shows an MRI, the scan on the left depicts a brain stem lesion which is exactly what is wrong with me. However, it is not necessarily located in the same place as mine, however I thought that this image best showed what was going inside my head – the best way to show my health focus which is obviously my condition. Using an image of an MRI is the best way to illustrate what my specific health focus is – my condition…

2.

Image: http://pinterest.com/pin/126593439495125404/ (Courtesy of Kyle Mills)

Okay so could not find a picture that really defines ‘dizziness’ adequately, I mean it is something that you feel happen to you, and cannot tell if someone is dizzy by looking at them. However, this picture does show what my view is like when experiencing an episode of vertigo – as if the world is moving, and also depicts what my vision is like, quite effectively during these attacks as I very often have visual experiences – things become very out of focus and blurred and even double vision. Excellently portrayed by the image as you are able to see two images of the woman’s face. Closest picture I could find which really summed up the experience of vertigo and visual disturbances…

3.

Okay, so this is the third and final image I have chosen. Again my condition or the symptoms that I experience are not visible, and therefore I have to use images that are a metaphor for what I face on a daily basis. The constant dizziness, is as if my world is always unbalanced, which is portrayed by the rocks being on a tilt. Also, one can never tell when one of the rocks is going to fall off and fall to the ground…This also depicts, in a really clever way the problems with my legs as just like the rocks, I never know when my legs are going to collapse, causing me to fall to the ground…

I thought I would share one more with you, as it is something that made me smile when I found it on Pinterest and something that I can very well relate to because of all the falls that I endure on a daily basis:

So, what do you all think of the images that I have chosen to represent my health focus? Are there any other images that I could have used to represent my condition? If you had to create a pinboard for yourself, what images would you pin?

As always love to hear your views, comments or suggestions…

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