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HAWMC Day 7: ‘In a Perfect World’…

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Hello Everyone, me again!  Time for Day 7 of WEGO Health Activist Writer’s Month Challenge.  Today it is up to the Health Activist to choose what to write about.  So, I have decided to have a look at the bonus prompts that were given to us at the start of the challenge:

In a perfect world…Wrote about one thing you wish you could change.  It can be in your own life or the world at large.

So, I though I would choose ‘world peace’ but though that would be too obvious!

As my blog is about my daily struggles with my condition…I would obviously choose to change so that I would not have to endure the daily symptoms or the struggles that I have to face.

It would certainly make my life so much easier, I would be able to have so much more independence and would not be a burden on my parents or family.

I remember when I was younger, approximately 15 or 16 I was so excited and looking forward for the time when I would be able to start driving lessons.  I would imagine how exciting to would be to pass my driving test and then having my own car – being able to take myself off and going where I wanted, anytime I wanted.

In addition, after finishing my psychology degree, I originally wanted to work within the mental health sector, perhaps as a support worker for those suffering with psychological disorders.  However, in recent years emphasis has been placed on community care and away from hospitals.  Therefore, this means that the majority of jobs in the field require employees to visit people at home, and so is now a job that requires being able to drive or at least the ability to use public transportation.

However, due to the condition that I have – and the constant dizziness, as well as the unpredictability of the vertigo and visual disturbances that I experience, it means that I am not allowed to drive as it would be too dangerous for me to do so…and due to the spastic paraparesis, the weakness in my legs, and due to the fact that they very often give way with no warning and I am unable to stand for very long, would make it near impossible for me to be able to use public transportation and walk long distances to visit people in their homes.

Not having this condition, would also make it much easier to be able to make friends – and keep the ones I have made.  This condition, and the dizziness that I have endured for so many years, have made it so difficult to make and keep friends.  At school, I was often ostracised from my peers as many often thought I was strange.  And even at university when I did make friends, they have not stayed in contact, although I do not know the reason why, it more than likely is due to my condition due to the fact that the dizziness makes it very difficult for me to go out to places, such as large shopping centres or to nightclubs due to the way that they make me feel and how they can bring on episodes of vertigo.  Unfortunately, these places are incredibly popular with my age group and where most people my age want to go when going out with friends.

I have tried to make contact with those who I were closest to at university but none have made contact… So, it seems at the moment I lead a very lonely existence, sure I have my parents, but would be nice to be able to spend time with other people, or even people my own age.

It also incredibly difficult leading a normal life with the spastic paraparesis…especially as I am unable to stand for very long – no more than around 10 minutes,  This obviously causes a problem when thinking about going shopping, hence the reason why I still live at home, as Mum and Dad are able to do the majority of chores such as food shopping, and the like.  And if I do go out then I have to take regular breaks, such as going for a drink so am able to sit down – making it an expensive trip out!!

Also, causes a problem with being able to perform chores effectively – I have to regular breaks and sit downs when I have chores to do, making it take twice as long to do.

Therefore, I would choose to change the dizziness and spastic paraparesis so I would be able to live a normal and more to the point a life that I would want to live….

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In Chronic Illness

HAWMC Day 6: Health Haiku

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It’s Good Friday, so I hope everyone has a wonderful Easter. I’s the 6th of April, so that means it’s the sixth post in the WEGO Health Activist Writer’s Month Challenge. Here is today’s prompt:

Health Haiku…Write a haiku about your health focus. 5 syllables/7 syllables/5 syllables. Write as many as you like!

I have to say, I was pretty nervous when I read the prompt. While I used to love to write poetry as a child, I haven’t done so in some years, and what’s more is I have never written a haiku before!! But I signed up to the Challenge promising myself I will write something everyday. So here it goes…

Image: http://happyhaiku.blogspot.co.uk/2000/07/theory-5-7-5.html

I may look normal

But I am not invisible

Cannot see what is wrong

∞ ∞ ∞ ∞

Silent deep and hides

Within my brain lies a lesion

Dizzy, weak legs and falls

∞ ∞ ∞ ∞

Are now part of my life

Feeling all alone in the world

Nobody understands

∞ ∞ ∞ ∞

Room is spinning fast

Legs weak buckling beneath me – fall!

Pick myself up…again!

Although there are 4 separate Haikus I written them so that they all link together, creating a story about my condition.

I hope you enjoyed them…

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HAWMC Day 5: Ekphrasis Post

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Another day has come upon us…so it’s now the fifth day of the WEGO Health Activist Writer’s Month Challenge. Th prompt for today reads:

Ekphrasis Post…Go to flickr.com/explore and write a post inspired by the image. Can you link it to your health focus? Don’t forget to post the image!

Ekphrasis is defined as ‘a description of a visual work of art…and is considered generally to be a rhetorical device in which one medium of art tries to relate to another medium dy defining and describing its essence and form’.

Anyway, this is the image that flickr chose for me:

http://www.flickr.com/photos/star_gazer_32/2052442753/

For copyright reasons, I was unable to upload the photograph to the post itself.

So, how would this image relate to my health condition? Well for one, this image really sums up my world how it looks whilst I am dealing with the visual disturbances in my daily life – everything out of focus, and blurred, so not being able to clearly make out objects, people or places, which when they come on can be frightening indeed…

Also, it is ironic that the image that appeared was of a carousel – they obviously go round and round, often producing feeling of dizziness and nausea. Two symptoms which I suffer from every day!!  Often, after coming off a carousel or other rides such as these, often leave your legs feeling like jelly, which is a sensation similar I experience everyday with my legs which continuously feels weak and wobbly, as if at any moment I will fall as if my legs are unable to support my weight.

Living with a chronic illness can in many ways be symbolised by the movement of the carousel horses, like the one in the image – up, and down, up and down. Many chronic illnesses, or illnesses which cannot be seen are very often fluctuating condition, so that one day you may be feel on top of the world, have lots of energy… whilst the next day you may be at rock bottom, feeling incredibly unwell, lethargic.

The colours and the lights are that are depicted in the image are problematic for me – strobe lights like these often being on episodes of vertigo and visual disturbances when I am faced with them. So being in the location of the carousel from the picture would probably leave me feeling very unwell indeed!!

The image has evoked a feeling of deja vu in me, as if the image itself describes my everyday life – the spinning of the carousel itself depicting the continuous dizziness and episodes of vertigo.  The image being blurred and out of focus depicting the visual disturbances which come and go throughout the day.  And the feelings after coming off a carousel reflecting the jelly like feelings in my legs and the weakness in them.

Well, that’s all folks.  I hope you enjoyed the post – I myself have found this particular prompt very difficult indeed, and not sure that I have done well with it all.  If you have any comments or thoughts, please feel free to share them, i would love to know what you all think

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HAWMC Day 4: I Write About My Health Because…

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Hey Everyone,

I hope everyone is well today, I myself didn’t have a great night – legs were trembling really badly throughout the night which left me unable to sleep.  Anyway, today’s a brand new day – which means Day 4 of the WEGO Health Activist Writer’s Month Challenge, and today’s prompt says the following:

I write about my health because… Reflect on why you write about you health for 15-20 minutes without stopping

Okay, so why do I write about my health condition?  Well, my blog only started in January so I am still pretty new in the blogging community.

One of the main reasons why I started my blog as I wanted to educate people on my particular condition – long-standing brain stem lesion and spastic paraparesis.  I thought it was important to write about the condition as it seems to be very rare, and thought it may be of use to educate people on the condition.

I also thought it would be a good way to reach out to the ‘health community’ in order to gain support, friendship and knowledge from others that may be going through similar experiences.  In my life, I often feel lonely – being stuck in the house, especially when I’m on my own and thought starting a blog would be something that could occupy my time, giving me a ‘little project’ to help with the boredom and monotony in my life.

The idea of starting a blog was first suggested by a counsellor, writing a journal as a way of expressing my emotions and feelings, and the idea grew from there.  I decided to make my  journey public.

  I suppose I also want to educate people on disabilities – and that not all disabilities are visible, I have heard  great many stories of people with ‘invisible’ conditions having abuse thrown at them when using disabled parking – even though they had the necessary permits and had a legitimate excuse for using the disabled parking spaces.

Another story I read, concerned a gentleman who suffered with Ménière’s Disease, a vestibular condition which produces similar symptoms which I suffer from – dizziness, poor balance and co-ordination, and who was arrested for driving under the influence for alcohol after he was unable to walk in a straight line when asked to perform a sobriety test.  Therefore, it is important for those, like me suffering from a  chronic and life-long condition to stand up and speak out and to make people understand that just because a person may look fine and ‘normal’ does not mean to say they are – their disability or illness may be hidden underneath what we may be able to see.  Reminds me of the times of when I have gone out or mean to the doctor’s for an appointment, and I have had my crutch with me and having a few people stare at me, as if they were judging me and wondering why on earth I was using such an aid as I didn’t have a broken leg and I looked perfectly healthy.

 So, that’s my post for today, I hope you enjoyed reading.  Please leave a comment or message and let me know your thoughts or experiences.

Do you have your own blog or website?  What are the reasons for why you write?

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HAWMC Day 3: Superpower Day

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Hey Everyone

Another day, and another new post for the WEGO Health Activist Writer’s Month Challenge. Okay, so today’s prompt says the following:

If you had a superpower – what would it be? How would you use it?

After some deliberating, and going through all the superhero’s that we all know – Superman, Spiderman, Batman, and so forth for some inspiration, I have decided that my superpower would be the ability to teletransport from place to place. At one point during the exercise, I was debating whether to go for flying – but seeing as I have a phobia of heights I decided against it! Heights is definitely one of my ‘Achille’s Heels’ in my life.

So why I have chosen my superpower to be teletransportation? Well for one, due to my condition – my weak legs, the dizziness, vertigo and the frequent visual disturbances I am unable to get out by myself. So, if I were to have the ability of teletransportation I would not have to rely on other people – especially my parents to take me to places where I want to go. To go somewhere to pass the time instead of spending it on the computer or watching daytime television – to go out when I want to instead of waiting for someone to take me.

Image: http://by-anca.blogspot.co.uk/2010/07/girls-and-just-another-girl.html

Another reason is due to the weakness in my legs, as I have regularly stated in the blog am unable to stand for very long before my legs collapse from under me – teletransportation would take the problem away of having to queue for public transport (which I am unable to do) – maybe I would even able to teletransport a chair with me so I would be able to sit down before a fall occurs – although my legs often give way without any warning!

I will be able to go to places that I have always dreamed of and go to America and Canada to meet dear friends that I have made in the fantastic support groups that I have found. Friends that have given me so much support, understanding and friendship during these last few months and at times when things have been bad. Through teletransportation I would be able to achieve that dream and without the need of going to an airport – with high ceilings and fluorescent lights which leave me feeling incredibly dizzy and can bring on the attacks of vertigo and visual disturbances that I experience.

And how I would use this superpower? Well I would use it to ease the burden that I often feel that I am on my parents? A superpower like this would mean that I could be less reliant on my Mum and Dad – I could take myself out instead of having someone else take me… A power that would just simply make life easier for me and give me a better quality of life…

So, what would your superpower be, and how would you use it? Again please comment below on your thoughts, suggestions, etc…

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