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HAWMC Day 9: Keep calm and carry on…

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Well another day, which means a brand new post, still soldiering on with the WEGO Health  Activist Writer’s Month Challenge.  And today’s prompt is:

 Keep calm and carry on…Write (and create) your own Keep Calm and Carry On poster.  Can you make it about your condition? Then go to (http://www.keepcalm-o-matic.co.uk/) and actually make an image to post to your blog.

First, I thought I would give you all a quick history of the (now) iconic ‘Keep Calm and Carry On’ poster.  The poster was first designed in 1939 by the British Ministry of Information, intended to send a message to the British public in time of war, ‘to steel their resolve and boost their morale’.

However, while similar posters were found at the time across the country during World War II, the Keep Calm and Carry on posters were never used and were eventually forgotten about.

They were later rediscovered in 2000 at a second-hand bookstore in Northumberland called Barrier Books.  Since copyright on any works created by the British government expires after 50 years, the poster became known to the public, and the shop started selling reprinted copies of the poster.  Now, the poster is instantly recognisable and has since inspired countless products featuring the original poster as well as a number of parodies of it.

So, I have actually created two versions of the poster to reflect my condition:

I have chosen this image, as it is something that is constantly being said to be, particularly by my parents.  As, it has been previously mentioned, due to spastic paraparesis, my legs are considerably weak, often collapsing from under me.  As a result, I am unable to stand for long, and lately have been experiencing terrible trembling, or ‘jelly-like’ feeling in my legs.  When I am doing chores, or am standing up in the house I often stumble and fall, often being able to grab onto something so I don’t end up on the floor, and so my whomever I’m with, usually Mum tells me ‘to go and sit down’…

And the other poster I have created is the following:

With neurological conditions no one person will experience the exact same symptoms, as it depends on which part of the brain is affected as different parts of the brain is responsible for different functions.  Therefore, no two patients with neurological disorders are alike, just  like snowflakes…

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In Chronic Illness

‘Miss April’…

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In the madness of the Writer’s Challenge that I have been taken part in that I have forgotten to mention that a very special friend of mine who has her own blog is completing a special project for her blog abledis.com.   Marissa, like myself suffers with chronic dizziness, and was diagnosed with a debilitating vestibular disorder and set up her website “with the intention of documenting my life living with a hidden disability”.  For those who aren’t familiar with vestibular disorders, they are defined as:

“…a disturbance that causes an individual to feel unsteady, giddy, woozy, or have a sensation of movement, spinning or floating.  Balance is the result of several body systems working together: the visual system (the eyes), vestibular system (the ears) and proprioception (the body’s sense of where it is in space).  Degeneration of loss of function in any one of these systems can lead to balance deficits”

The project is called ’12 Months, 12 Journeys, 12 Lessons’ and where she is educating herself about a different medical condition each month.  So far, Marissa has featured spinal muscular atrophy, budd-chiari syndrome and multiple sclerosis.  And this month I and my condition, long-standing brain stem lesion and spastic paraparesis is being featured.  The page featuring me, with a list of the posts related to my condition, can be found here:

http://abledis.com/12-12-12/rhiann-johns

As part of this incredible project, I will also be taking part in a podcast interview with Marissa which will be available to listen to near the end of the month!  Each month Marissa is truly being an advocate for the project member and the condition being featured by wearing a t-shirt and a wristband to various medical appointments to show her support and raise awareness for the cause.  As you know, my condition is very rare, and so were no organisations or charities that we could find to reflect my condition, so Marissa had a t-shirt made instead! And somehow, we were able to find a website that had wristbands (silver) to support various brain disorders. Here they are:

Anyway wanted to let you all know about this incredible project, and I hope you all support Marissa and all of her hard work by visiting her website and having a look around and learn all about her health condition as well as those project members being featured.

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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 1: Health Time Capsule

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Well folks, April is finally here – the sun is shining and flowers are blooming, Spring is definitely in the air – and of course begins the Health Activist Writer’s Month Challenge courtesy of WEGO Health. A challenge in which I have to write a post for every day in April – being provided with prompts that I have to write about.

Today’s prompt says the following:

Pretend you’re making a time capsule of you and your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it.

Okay, so first thing, according to Wikipedia, a time capsule is defined as:

“…a historic cache of goods or information, usually intended as a method of communication with future people…”

Sounds easy, right? However, I have had some difficulty – as my condition is not common and seems to be rare, especially as I have come across very little information regarding it and have not found anyone else living with the same condition as me. Although I take several different medications, none of which really treat my condition or its symptoms, they merely ease the severity of the symptoms.

So, to start I have decided to place a letter intended for whoever happens to find the capsule – a letter introducing myself, about my life, hobbies, interests, and of course, about my condition – the medical jargon, the symptoms and how it affects me and my daily life. Perhaps, also including transcripts of my blog posts to gain extra insight into my condition. My journal would also be a great tool to learn more about me and my condition, one which fully dictates everything I go through day in and day out, as well as thoughts and feelings, pretty much everything about me!!

Also, have included two letters – a referral letter and the other the first appointment to see a hospital consultant. You may be wondering why, but I think it would be interesting as part of social history to compare the waiting lists from the past and the present. What would the people living 2112 think of our waiting times to see a consultant? Would they be shocked at how long they are? This is also of some interest for people living in the UK considering the recent discussions into the reforms of the NHS. Whether the reforms will make any difference to the length of waiting times remains to be seen.

I have also included a visual aid to represent one of the main symptoms that I experience – dizziness. And I have represented the dizziness by placing a spinning top into the time capsule.

Perhaps when the person who opens the time capsule will get dizzy when looking at the toy spin round and round. Maybe then they will be able to appreciate what it is like to live with it 24/7 like myself.

I have placed my degree certificate and transcripts in there – to show that even when living with an invisible and life long condition, it does not have to stop you from achieving something great.

My crutch is something else that is going in. A mobility aid that helps me in my daily life, as my legs are weak and have trouble with balance, it helps (or at least tries to!) maintain my balance and so I don’t fall!!

Another problematic symptom that I experience is due to the spastic paraparesis, causing stiffness, heaviness and tingling sensations in my legs, and of course weakness which often leads to my legs giving way on me. However, this is obviously a symptom which nobody can see, so it lead me to ask how I would represent this in my tine capsule? Then I remembered, a nickname that I was given a while ago – Bambi!! Yes, I have been given a nickname based on the Disney who at the beginning on the film is unable to stand on his legs, falling over as he tries to – not unlike me when my legs are weak and they collapse from under me. So I have placed a cute cuddly toy of Bambi to represent the spastic paraparesis.

And I have also included a butterfly – something that I love to represent me. Love the symbolism of them – that they are free beings, able to go here and there, something that I wish I could do. And of course, they start off as something else and transform into something beautiful. Perhaps, that is what happens when we become ill – that we transform into a better version of ourselves.

So, that is my time capsule!! I think that when someone in 2112 will open this, they will probably be very baffled!! Although, for many years I think I have baffled many doctors as getting a final diagnosis was quite a battle.

Where would I hide the time capsule?  Well, it would probably hide it in the vast field near my house – it would be nice that somebody who in the future who’s living in the street where I am now would find it.  Can’t imagine that it would end up in a museum or anything, but even if it’s just to educate someone about the complexities of the brain, and the problems associated with neurological conditions, and those conditions which cannot be seen.

Hope you have enjoyed the first post and would love to hear any responses and thoughts you may have, don’t hesitate to comment.

What would you place in your time capsule??

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Exercising: When it is it too much? And Upcoming Celebration

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Hey Everyone

So, have been really good lately, and have gone on the new AeroPilates Machine nearly everyday – the minor day missed because I have been too unwell or have had other things going on so didn’t manage to ‘fit’ it in during my day.

It has mostly been going well, think have gotten to grips with most of the exercises which were difficult to start off with – and boy, can you feel it working!! However, I have found myself feeling extremely tired afterwards and with my legs feeling extremely weak, sometimes not even been able to get back up straight away afterwards. During a particular exercise, you are required to put your legs in these straps and to raise the legs 90° in the air, on doing this however I am finding that my legs jerks and shakes, similar to what happens when the doctors are checking my reflexes, it used to just happen with my left leg as it seems to be weaker but has just started happening with my right leg too, and have started seening it happening with my arms when doing some of the arm exercises.

Does this mean that my legs are starting to become weaker and my arms are beginning to become weak also?? Just great!! Now my Mum is telling me constantly not to overdo it on the AeroPilates but whilst I am on there I don’t feel particularly tired, so how am I supposed to tell when enough is enough?? To demonstrate how the AeroPilates machine works here is a video from YouTube with some of the exercises that can be done on the machine:

On a happier note, this week I will be celebrating my 26th Birthday – and whilst it is supposed to be a lovely celebration surrounded by friends, going out perhaps to a local nightclub or bar, I however will find myself alone for some of the day whilst Mum and Dad are at work. Having this kind of ‘disability’ I am finding it a struggle to find someway of celebrating, given my condition and how it affects me especially considering how it often leaves me feeling fatigued, extremely dizzy and with legs so weak I am unable to walk or stand for very long. I have however been invited to a local Resource Centre where I volunteer to celebrate my day – although it will mean having to get a taxi from my house to the centre and back again.

Yet, another disadvantage of having such a disability – having to really think things through before going somewhere and planning the journey and all that comes with it instead of being able to just go out and do.

 

 

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