Tuesday, 17 August 2010

I Am Thinking Of How It Feels To Be Bed Bound

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I Am Wondering About Illness and Being In Bed

Sometimes I lie in my bed, tired and a little fractious, and think that if I was fighting an illness, how would that be for me?  I imagine Steve feeling so exhausted during the day that he needed to lie down and sleep.  He was full of energy and liked to go fishing in his beloved boat Illusion, to get things done, to be active and to participate in the day.  For him to be tired enough to have to go to bed in the day was very unusual.  So did he feel like I do sometimes; uncomfortable, dissatisfied, unrelieved?  I can feel the lack of peace when I lie down in my bed.  I can feel that my limbs are too weary to relax and I can feel that I am not benefiting from my rest.  But I can get up later and move around without questioning how my energy levels will cope.  There is always a point at which I can gear myself into action and get back into the swing of things as if I had never had to pause and rest.  But for Steve, and others who are ill, there is no change.  There was no moment that Steve felt that he was rested enough, and that it was time to get up and join in the day to day routines around him.  the exhaustion in his body kept him lying down, and when he decided to get up and join us, it made him move slowly and pause for breath, and to decide to do as little as possible in order to stay in the loop with us.

But sometimes, as I lie in my lovely bed, anxious and unrestful, I think What if this was the best I could feel?  What if this is where I would stay and the world out of my window was gone for me for ever?  How would I feel if I could no longer get up, dust myself down and drive off in my car to meet someone, do the shopping, get something done?  I find it very scarey.  I think that if I had to stay here, no matter how red my sheets are and how many wonderful pictures I have on my walls, I would feel frightened and trapped and terrified that this was as good as it could be.  I would remember with longing how I took for granted the moving around the house, the choosing of clothes, the way I could just Do things.  I don't think I would be comforted by the lovely things that surround me in my room.  

What is it like to be ill in bed?  If you are terminally ill, how do you think?  What do you think?  What are the silences like when no one is coming to visit you and you have to endure yourself inbetween distractions?  I imagine myself into a state of mind that is as near to this as is possible in a healthy inexperienced person.  I find my focus changing utterly.  I feel my body much more profoundly, and feel it as if it is not a part of me.  When I am dispirited and lie down at night to sleep, and don't feel any benefits, I think Ah.  So this is a fraction of what it must be like to have your body slowly succumb to an illness that will eventually kill you.  If I were in that position, I may find the memory of how I took for granted my health and life before it began to fade, almost unbearable.  Or would I feel so physically weak, ill, unwell, that I would find the lying down in peace in my bed a relief?  Would I concentrate on how I felt now, and not find time to remember how it was to do as I pleased during the day?  I know that when I try to imagine how Steve must have felt as his symptoms became more and more obvious, that I was not as understanding as I could have been.  I was simply ignorant.  I had had no experience at all of such a thing as cancer and the inevitable decline and eventual death it brings in the sufferer.  Nor, I have to say, had Steve.  Between us we had no real idea of what to expect.  We feared that he would die, but until the disease had rendered him visibly and mentally incapable, we hoped he wouldn't have to.  I knew he would die before he did.  I think.  But as I sometimes try and imagine how I would feel if I had a terminal illness, I think that perhaps Steve always knew it was the end and that he would die.  He just would not admit it.  I wonder if I would?  If I were in his position?  

Lying restless in my bed sometimes, in the night, with my limbs finding little relief from exhaustion from lying down, and worrying about it, I think This is how Steve felt.  All the time.  And for him there was no getting better.  It wasn't just a temporary discomfort, it was total, and constant and forever getting worse.  This, for him, was never going to improve.  

And how is it for anyone who is bed bound?  Anyone who contemplates their own death?  I may be in that situation one day.  I hope I don't drop dead or die in my sleep.  I think I would like to prepare myself to die.  I think I would like to know it is coming and get ready for it.  That is what I think now.  Not having ever had to deal with my own mortality, everything I write is just theory.  And this is why I am writing this - what is it like to lie in bed and consider your own end?  I just do not know.

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