Saturday, June 4th 2011

Return to St Michaels

On Tuesday this week I was transferred to St Michael’s Hospice where I have been ever since. I think the intention is to see what can be done to manage my breathing difficulties, possibly try BiPAP again, and sort out what to do about my care package, none of which had been discussed with me yet.

Unlike the constant hustle and bustle of a busy hospital there is a calming influence here at the hospice which I find much more restful. I’ve been able to get into the newly refurbished garden and Labyrinth on several occasions and just being able to get some fresh air and sunshine has made a world of difference. I’ve also got access to my computer again so have something to occupy my mind. My breathing is still giving me a lot of concerns though. I am not sleeping very well and in fact I’ve had several nights where I’ve not got any sleep at all so I’m feeling quite exhausted. Also my breathing is now starting to be dictated by the position I am in. It is for instance becoming harder to breathe normally when sat in an upright position and it is already causing problems when I use my shower chair during the mornings for my personal care. Also I am now having to use the wheelchair reclined back further and I am spending more time lying on the bed catching my breath. In fact this is now where I am using the computer – lying back in bed. But dictating into my microphone is leaving me exhausted so I am steadily reducing the hours I can use it. In addition to all this I am now starting to take anti-sickness pills several times a day to combat the queasiness I feel around mealtimes. After last week’s breathing episode I feel I have turned another corner with this disease and I now face learning to live with reduced abilities once again.

Mark

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