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Saturday, 16 February 2013

The fear


The one emotion we never seem to get rid of is fear. We're always scared or worried about something. I'm the world's worst worrier, I always have been, but the word has taken on a whole new meaning since I've been ill.

I worry a lot about my future, scared of what it may - and may not - hold for me. How long will I live/how soon will I die? How much worse will I get? I'm scared by the fact that I am continuously deteriorating, my condition is progressing all the time. I'm terrified of ending up trapped in my body; locked in, where my mind is sharp and I am aware, able to think as normal, but my body not working at all. I can't bear the thought of not being able to communicate; is there anything worse than that? Only being able to blink, and having to use your eyes for communication, which is very limited. That's my biggest fear; even my fear of dying is second to it. I have a lot of respect and admiration for Stephen Hawking.
 



I get weaker all the time, losing more function and control, which is both scary and frustrating. Yet, they say Ehlers Danlos is not progressive. I certainly have progressed, rather rapidly, and I most of the people I know with it have too; especially those of us with severe gastrointestinal involvement. There's so much that still needs to be understood about the condition.

Then there is my fear of dying. Many, if not most of us are scared of dying. What happens when we die? Is it painful? Is it scary? Do we know when we're dying? I hope my death will be peaceful and painless, and I won't be alone. I don't know what I believe happens afterwards, I'm not religious and really don't know what to believe. I hope, whatever happens, that it is pleasant.

What do you believe?

 
However, as much as I am scared I am not an anxious person and am able to deal with my fear. I'm very laid back and am able to go with the flow, and I think that is part of the reason I am able to cope. Being anxious would only add to my problems. Anxiety and depression is very common in people with chronic and/or life limiting and life threatening conditions, and I am fortunate not to suffer from either. Sure, I have my down days, and at times may feel anxious, but it does not consume me like it does some others, and I am very grateful for that.
 
"Fear cannot be without hope nor hope without fear."~ Baruch Spinoza

We have to take one day at a time and make the most of it. We all should, because you never know what’s round the corner. We have to make life as fulfilling and meaningful as we can. Never stop hoping and never stop dreaming.

Always believe.


About Lucy Watts MBE


Lucy is a disabled 22 year old young lady with life-limiting complications of Ehlers-Danlos Syndrome. She writes and speaks for a number of charities and runs this blog. She is an Ambassador for Together for Short Lives and Dreams Come True, Trustee for the Pseudo Obstruction Research Trust and is the first Youth Ambassador for the International Children's Palliative Care Network, also working with charities such as Scope and the Council for Disabled Children as well as Association for Young People's Health via the Young People's Health Partnership, the Children's Health and Wellbeing Forum and the Children and Young People's Health Outcomes Forum. Lucy was appointed MBE in the Queen's New Year Honours 2016 for her Services to Young People with Disabilities.
View all posts by Lucy →

3 comments:

  1. Beautifully written it made me cry :-( hugs xx

    ReplyDelete
  2. I know you probably don't want to think about it, but have u written your wishes down, just in case? That way u can have a say in your care just in case it progresses and your family doesn't have to make any decisions. I need to do it as well.

    ReplyDelete
    Replies
    1. I haven't yet, but I must do. Thanks x

      Delete

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