Sunday, August 28th 2011

A Tough Month

I celebrated my 51st birthday last Wednesday not exactly as I imagined it would be but instead wrapped up in bed unable to move and fearful of the future. My breathing continues to worsen, so much so now in fact I have been effectively confined to bed 24 hours a day – every day’! Any attempts to leave it and reposition myself leave me gasping for air. It has been a particularly frustrating month for me as I have seen valuable time squandered whilst I lie here helpless. Even the computer which I have long depended on to keep my mind fully engaged is now becoming difficult to talk to as the volume in my voice continues to diminish. Quite often now I have to endlessly repeat a sentence or phrase before the software is able to understand. No wonder it takes me so many hours to create the simplest documents. My OT has been made aware of the situation so I’m hoping that she can set up another assessment on my needs with AbilityNet. I really hope that they can come up with something soon otherwise I shall be facing the real possibility of being physically unable to communicate with my digital world and those around me. But it isn’t just my computer that is suffering; I am also finding it difficult for people to hear my voice on the telephone as well. In addition, Debbie, one of my carers, has obtained a baby monitor so they can listen out to changes in my voice wherever they are in the house.

My energy levels have fallen through the floor this month. I wake up each morning with very little desire to do anything other than go back to sleep. By the time I’ve got myself sorted out the morning has gone and I have very little to show for it. And so for the rest of the day I drop in and out of sleep seemingly finding escape from the problems of the world around me.

I’ve lost my appetite almost completely now. Very little food gives me any real pleasure and the tastes and textures do nothing to stimulate eating. And yet bizarrely around midnight my stomach is growling in complaint at a lack of normal food even though I know full well that by morning I’ll be struggling with a mouthful of cereal.

I’ll sign off now with a photograph taken over the week leading up to my birthday when my whole team of carers descended on me for a surprise birthday gathering. There were supposed to be more photographs in this post but there appears to be some kind of technical glitch preventing me adding them to my post. I’ve already spent an utterly exhausting afternoon trying to clear the problem without any progress. I suggest you come back in about a week to see if I’ve made any progress.

With my niece, brother and nephew at my bedside where I now spend all my days. 17th of August 2011


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3 Responses to Sunday, August 28th 2011

  1. Christian Glover says:

    Hi Mark,
    It is so nice to read another blog entry and so sorry to hear your condition continues to bring more problems for you. It was really nice coming down to see you recently and glad you have put a photo up of you with me and and my two. Speak to you soon!

    Take care Mark, love you

    Chris xxx

  2. CHRIS RUSSELL says:



  3. Ida says:

    Nice to see you again but I’m sorry for what you are going through. A late Happy Birthday and sending good wishes your way


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