Reflection on a life with illness…

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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 prompts given.

Today’s prompt reads as follows:

Reflection…This is a day to reflect.  For WEGO Health family, we reflect on those who lost loved ones in the Boston Marathon Bombing last year and hope for a bright future for those impacted.  Reflect on your journey to this day, what are your thoughts and hopes for the future

I am writing this post whilst lying in bed.  It’s yet another bad day thanks to the neurological condition that I live with; it’s another day in which my legs are incredibly weak, and the trembling in them is severe that I am unable to walk far and so I am confined to my bed.  It’s days like this which we are able to reflect – to reflect on the past, present as well as what might have been and dream of a brighter future despite illness.

I was a typical girly girl when I was a child. I loved the fairy tales and the idea of a happily ever after.  That’s what I thought would happen when I grew up – that I would meet my own prince, get married and then live happily ever after.  I had a very naive and child-like view of the world, and suppose my parents shielded me from the horrors and sadness that can very often exist in the world.  Never did I imagine that I would live a life, like the one I am stuck in, I suppose that no one imagines a life with a neurological condition or any chronic illness.  But that was the hand that I was dealt.

I obviously grew up, and developed enough self-esteem to realise that my happiness was not dependant on some hypothetical Prince Charming to sweep me off my feet.  Instead, I dreamt of going to university in order to establish a career for myself.  I eventually decided to study Psychology with the aim of finding work to help other people in need of support and understanding.

However, this particular dream was not to be, and instead of graduating with honours from University and entering the world of employment or even further study, my symptoms became worse.  As an alternative to attending job interviews, my life became all about attending doctors’ and hospital appointments, to attempt to find the cause of my worsening symptoms.  It was to be a long and difficult journey on the road to diagnosis; for example gaining the original referral to see a neurological consultant was a battle as the GP was adamant that my symptoms could be explained by the anxiety disorder I had originally been diagnosed with.  That and long waiting lists to see consultants and for tests to be conducted.

Now, I have a definitive diagnosis.  It might not be what I wanted or expected and the knowledge that the condition was a life-long one was both a shock and a disappointment – knowing that the symptoms may get progressively worse, and the knowledge that the symptoms may prevent from me from ever being to work.  Yes, the journey has been difficult and the symptoms have become worse but on reflection I have learnt that despite being diagnosed with an untreatable and long-term neurological condition does not mean the end of my life.  Life indeed does go on, and despite not being able to work I have discovered that I can still have a purpose in life and help others.  I am involved with a new community for those affected by neurological conditions called Neuro Nula  and am excited by not only the work that I have already done for them, but for the work in the future; to develop the website further and to help others who are facing similar situations that I once faced after being diagnosed. To make someone realise that they are not alone like I once felt.

On reflection I have also learnt that despite living with a neurological condition does not mean that I cannot accomplish everything that I dreamt of as a child.  The journey towards those dreams may look different  and may also take longer but they are still achievable.  This is summed up brilliantly by a quote that I came across on Twitter:

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2 thoughts on “Reflection on a life with illness…

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