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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 given prompts.

Wednesday April 8th: Things Remembered 

What is an item you have kept with you that reminds you of an important time in your life?  Whether it was a good day, a stressful time, or a happy moment…why does this item remind you of that period of your life?

I have to admit, that I have an obsession over stationary.

Notebooks, journals and pens are examples of the type of stationary that I love to buy, and over the years, have acquired a lot of pretty and beautiful stationary.  The blank pages are embellished with my thoughts, memories, experiences and important reminders.

These notebooks are not only a reminder of the good, bad and important times of my life but they tell a story.  A story of a girl. A story of a girl struggling with unexplained symptoms, and doctors attempting and unable to find the answers.  It charts my story from being undiagnosed to finally having the diagnosis of a neurological disorder.  These pages not only charters the factual information from the time, but also contains my personal thoughts and feelings; the disappointments, frustrations, and the tears.  But also the relief and hope.

Writing can be a cathatric experience...
Writing can be a cathartic experience…

These journals are not only important for posterity, but for someone living with a chronic illness they are incredibly useful in order to chart life with said illness.  By keeping a journal, it makes it easy to look back into the past and track the changes, and any possible deterioration in the symptoms that I endure on a daily basis.  Often when doctors ask us, about our experiences with our symptoms in the past, it can be difficult to remember, or in the stress of the appointment, we cannot find the words to describe what my pain feels like, or how does the dizziness make me feel for examples.  However, by having written documentation of everything regarding my life and experiences I do not have to struggle to remember, or find the words as they are already written in front of me, in my own words about my own life.

Some of the lovely notebooks and journals that know all my innermost thoughts...
Some of the lovely notebooks and journals that know all my innermost thoughts…

The journals are not useful in recalling the past in regards to the symptoms associated with the neurological condition I have been diagnosed with, but they are also a wonderful opportunity to reflect on the accomplishments we have managed to achieve despite the limitations placed upon us as a result of living with a chronic illness.  On the bad days, in which the symptoms are particularly debilitating, it can be so easy to wallow in misery and ruminate on the limitations and everything that chronic illness has taken from us, but it is on these days that we need reminding of everything we have achieved DESPITE chronic illness.

My journals mention all the accomplishments that I have managed since receiving the diagnosis of a neurological condition – going to places that I have not been able to go for many years, and staying out despite experiencing severe symptoms, going on a cruise to name but a few.  And it is these accomplishments that I still have managed to achieve despite my condition and its symptoms getting worse.  They are reminders that a great life can still be found even when experiencing difficulties which are out of our control.  They are also a great motivation on those bad days, or when negative thoughts continue to plague our conscious thoughts.

These notebooks and journals are important items that I own, not only because they are mine, but also it represents everything about me – my story, my life and my own words.

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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