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HAWMC Day 11: Theme Song

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Hey, everyone…

Am actually in good spirits today, had a great chat last night with my great friend Marissa for the interview I will be doing as part of her project on her blog abledis.com.

Anyway, getting back on topic, it is another day of the 30 Days, 30 Posts Challenge for the WEGO Health HAWMC.  I think today’s prompt is so far has been the most challenging for me, and it reads:

Theme Song…Imagine your health focus or blog is getting its own theme song? What would the lyrics be?  What type of music would it be played to?

I have found this very challenging, as I am not musical in the slightest.  So, instead of composing my very own song for my health focus or blog, instead I have chosen to select a song which I feel inspires me and reflects my life with the condition.

And the song I have chosen is ‘Because of You’ by Kelly Clarkson.  I absolutely love the song, and have decided that the ‘you’ in the song is a metaphor for the dizziness, and reflects how the dizziness has affected me and made me feel through the many years I have dealt with it.  These are the lyrics:

I will not make the same mistakes that you did
I Will not let myself cause my heart so much misery
I will not break the way you did
You fell so hard
I’ve learned the hard way, to never let it get that far

Because of you
I’ll never stray too far from the sidewalk
Because of you
I learned to play on the safe side
So I don’t get hurt
Because of you
I find it hard to trust
Not only me, but everyone around me
Because of you
I am afraid

I lose my way
And it’s not too long before you point it out
I cannot cry
Because I know that’s weakness in your eyes
I’m forced to fake, a smile, a laugh
Every day of my life
My heart can’t possibly break
When it wasn’t even whole to start with

Because of you
I’ll never stray too far from the sidewalk
Because of you
I learned to play on the safe side
So I don’t get hurt
Because of you
I find it hard to trust
Not only me, but everyone around me
Because of you
I am afraid

I watched you die
I heard you cry
Every night in your sleep
I was so young
You should have known better than to lean on me
You never thought of anyone else
You just saw your pain
And now I cry
In the middle of the night
For the same damn thing

Because of you
I’ll never stray too far from the sidewalk
Because of you
I learned to play on the safe side
So I don’t get hurt
Because of you
I tried my hardest just to forget everything
Because of you
I don’t know how to let anyone else in
Because of you
I’m ashamed of my life because it’s empty
Because of you
I am afraid

Because of you
Because of you

Not all the lyrics are relevant, but there are a select few that really fits my life with the dizziness and mt condition in general.  For example, due to the severity of the dizziness and the episodes of vertigo and visual disturbances, I am unable to go out by myself and this is reflected in the lines “I’ll never stray too far from the sidewalk/Because of You/I learned to play on the safe side/So I don’t get hurt”.  It could also refer to the weakness in the legs, as they often give way on me with no warning, so obviously have to be careful of potential dangers in case of a fall.

Additionally, with the dizziness and experiencing at a very young age, I didn’t know what was going on, and was very difficult for me to articulate to doctors what the dizziness was like, and how I felt.  Also, friends and peers at school due to the dizziness, thought I was ‘odd’ because of it, sitting in science class on high stools, I often had to grab on to the side of the table and because of all of this I was ostracised by my peers, and when I did make friends, or whom I thought were friends, I later found out that they would make fun and ridicule me behind my back.  Even now I am cautious when meeting new people, and find it difficult to make new friends or trust new people who come into my life.  This is perfectly summed up with the lyrics “Because of You/I find it hard to trust/Not only me, but everyone around me/Because of You/I am afraid.”

Afraid? Yes, the dizziness, and the unknown of what it was or the origins of it, made me panic a lot,  the root cause of the anxiety that has plagued my life for many years….

Due to the lack of friends, the loneliness I lived with, and the dizziness and being generally unwell a lot of the time, I often felt low and often cried myself to sleep, a cathartic way to release all the pain I was feeling, sometimes I still do especially when the dizziness is bad or when my mood is low because I feel so bad – “And now I cry/In the middle of the night/For the same damn thing.”

There are many more comparisons that I could make between the life I live and have lived for many years with the song, but think I will leave it there and instead will leave you with the video to this amazing song:

I hope you have enjoyed the latest post, please feel free to post a comment – What would be your theme song?  Is there a particular song that inspires you or one that you can completely relate to?  Would love to hear your thoughts…

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HAWMC Day 10: Dear 16-year-old-me

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Hello everyone, hope you are all doing well.  Well, time for a brand new post for the HAWMC Challenge by WEGO Health.  Today’s prompt reads as the following:

Dear 16 year-old-me…Write a letter to yourself at age 16.  What would you tell yourself? What would you make your younger self aware of?

It sounds so easy, but think it has been a real challenge even though it was only 10 years ago since I was 16.  I remember at the time it was a very painful and difficult time in my life, so the letter that I have written is very personal and isn’t easy to write, especially dredging up the emotions and feelings that I was feeling at the time…

Image: http://reshapecoach.wordpress.com/2012/01/23/write-a-letter-to-yourself/

Dear Rhiann,

It’s hard to believe but this letter is from ten years from now, the year is 2012, and the future you is writing this.  I know you are going through a very painful and difficult time in your life, having formally been diagnosed with depression, and having to start taking antidepressants a couple of days before your sweet sixteen.  Writing this, I remember how sick they made me feel for the first couple of weeks, only being able to eat very little before I felt full.  I also remember the incredible loneliness I felt back then, especially during school time having no friends and walking around in a daze, trying to pass the time until lessons started back after lunch.

But I want to reassure and to let you know that all these problems are ‘not just in your head and you are not crazy or a ‘freak’.  I am not able to say what is wrong, but the dizziness that you experience, you are not imagining it.  I know you feel that there is something wrong, the doctors telling you constantly it is anxiety related.  And you timid and compliant, are too afraid to tell them otherwise, thinking that they are the professionals, “so must know what they are talking about”, making you doubt yourself that the symptoms you are exhibiting are even real or they are not as real as you imagine.

But, remember doctors do not know everything.  As tests are coming back normal, and cannot find a cause for the dizziness, the doctors then explain it away by claiming that it is all psychological.  But it isn’t…Please do not give up and lose hope that they will never find out a cause, they do!   It may take several more years, but you do find out….

I cannot say it isn’t going to be easy, or that it’s going to get better and you are going to live a full and normal life, but I believe that you are stronger than you think you are…and you can handle a lot more than you think you can…

And the loneliness you feel – it will go away, you are going to find people who will accept you for who you are, friends that are going to support you in times of need.  I remember at sixteen being teased and ridiculed for who you – just remember that no-one has a right to make you feel that you need to apologise for who you are.  Don’t be ashamed to be yourself…

And just wanted to say – the heaviness and stiffness that you feel in your legs?  The feelings that have been with you, since you can remember?  Well, these feelings, they aren’t normal and isn’t something that everyone experiences…Maybe mention this at your next doctor’s appointment.

And good luck for your GCSE exams in a couple of months – not that you need it, you are going to do great.  Next stop will be your A-Levels, and then who know maybe even to University 😉

Take Care and remember to persevere with the doctors – never stop searching for an answer, and never let them tell you that’s all in your head.

From yourself (at aged 26)

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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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HAWMC Day 8: Best Conversation I had this week…

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Happy Easter Everyone!!  Hope you are all enjoying your Easter Eggs… Well, it’s now day 8 of WEGO Health Activist Writer’s Month Challenge, which means a brand new post, and today’s prompt reads:

Best conversation I had this week…Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week

Well, unfortunately, today I am not feeling well today, and am unable to vividly remember any conversation I had this week.  However, quite recently a very nice woman got in touch with me via a website that I am a member of, she recently moved into the area and was looking to meet new people.  Anyway, she first came to my house a few weeks ago, and last week we arranged to go out into our local town for lunch.  We were talking about my blog and she said something that stayed with me:

Your blog is a great idea, is a great way to educate people about your condition and you never who you are going to help by writing it.  Some person may read it, and having the same symptoms as you and go to the doctor’s with the information and get a diagnosis.

I have never really though about it that way, sure I wanted to educate people about my condition and to raise awareness of hidden disabilities in general.  But would be amazing to think that maybe someone could helped by my blog, especially as it took me years and years to get a definitive diagnosis, instead doctor’s telling me it was all down to anxiety and my problems ‘were in my head.’

It was also probably the best conversation I have had this week, as for one it wasn’t with one of my parents, who I spend most of my time with. And second of all, going out with someone and having a fun conversation enabled me to forget about my problems for a while, and just have some fun…

Anyway, I am going to keep this short for today, especially as I don’t feel well, so will see you all tomorrow…

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‘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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