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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Sunday, July 31st 2011

Feeling exhausted

Things have not been going too well for me these past few weeks and I’ve spent most of that time confined to bed thanks to my weakening breathing muscles which are really starting to dictate what I can and cannot do. Consequently they’ve been making life a little bit miserable lately. I’ve only got to be a few degrees out of my ‘sweet spot’ and I am gasping for air and unable to talk. To make matters worse I developed a bit of a rattle on my chest last week which culminated in a late-night visit from the doctor who prescribed some antibiotics which I am still working my way through.

The hot weather we’ve been enjoying lately has brought with it further difficulties for me making life distinctly unpleasant. The high temperatures have made breathing even more difficult and tiring and I’ve been going to sleep with an oscillating fan by my bedside not only to help me to keep cool but also in some way hoping it will assist with my breathing. My appetite has been fluctuating wildly. Some days I can do no more than sip on a few ensure high calorie drinks whilst on others I can be coaxed into eating some solid food. But walking hand-in-hand with my poor appetite are the feelings of nausea which make me feel even worse. Fortunately I have some tablets to help combat it.

To help alleviate the positional problems I’ve been facing when taking a shower, Caroline, one of my OT’s has made arrangements for a different model to be delivered, one which allows the chair to be reclined a lot further. It’s not perfect but at least I can breathe a little easier whilst being washed and that at least removes some of the anxiety. It was getting to the stage where I was becoming nervous about leaving the bed to take a shower!

Apart from this everything else is running okay although boredom is starting to set in due to lack of stimulation. The new night care is working out well and my lovely new mattress really makes laying in one position for a long period of time bearable. Just as well really as my world at the moment seems confined to 6ft x 3ft.


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