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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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HAWMC Day 2: Quotation Inspiration

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Well the 2nd of April is here, and so is the second post in the WEGO’s Health Activist Writer’s Month Challenge.  Today’s prompt is as follows:

Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes

So, thought this will be an easy challenge for me, as part of my daily journal that I keep I regularly write different quotes that I have found, positive ones that inspire me or lifts my mood, or perhaps something that ties in with a particular event that has happened that day.

However, it has been tough selecting just the one quote to use, but have decided on the following that I found recently on Pinterest that really inspired me, and it says the following:

This really spoke to me on a personal level as all my life, some people have made me ashamed of who I was  – at school I wasn’t like everybody else – I was very quiet, reserved,  and certainly was not part of the ‘popular’ gang.  I was more of a loner, a ghost, somebody  no one really noticed…

And there was my ‘issues’ with the dizziness – due to the condition, I had a problem with buildings which are open and have high ceilings, consequently, I used to panic quite a lot as I didn’t understand what was going on, and was unable to take part in sports as the hall in which our P.E. Lessons took place was very high.

This led to a lot of name calling, and left me ostracised from my peers, during a school trip to London where I became very unwell with the dizziness and led to a panic attacks, my ‘so called’ friends deserted me to go shopping, leaving me with a teacher whom I barely knew to look after me.  As in the quote, people throughout my life and have left me feeling ‘weird’.

However, years have passed and I can now understand that who I am is not my fault – I have a legitimate medical condition which explains partly the type of person I am.  And no-one has a right to make anyone feel ashamed of who they are – so what, if someone is a shy or quiet person, who would prefer to sit down with a book rather than going partying and getting drunk…

We are all different and unique – if everyone in this world was exactly the same, with the same interests and personality, then the world would be pretty boring, wouldn’t it?  Nobody should have to hide the person that they are, and we should all free proud of who we are and celebrate our differences and what makes us unique – after all they are the reason that they people in our lives love us…because we are us.

And as the quote says, if we hide our true selves, we never know the people who will love us for who exactly we are.

I do believe this, although there have been times in my life, even recently when it is hard to accept or belive what the quote is trying to say, maybe I will write the quote and put it up somewhere I can read it every day…

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