Wednesday, July 21st 2010

Not feeling my best again today

It’s 8:30 PM on a warm summer’s evening as I begin writing this blog entry. I’m feeling very tired today, my eyes feel heavy, my appetite has dipped a little again, and although I still have lots of work to do bed can’t come quick enough this evening. But I still have another hour wait before my carer arrives. So whilst I’m waiting I think I’ll put a few words together to bring you all up to date with what’s been happening over the past few days.

I’m starting to feel at home in my new wheelchair which has allowed me get out of my room a bit more often. It’s also given me an opportunity to draft in help from my carers and the hospice staff so that I can get a few pictures during my time here of some of the kind-hearted people caring for me. So on Saturday morning Ann took up wheelchair duties accompanied by Chris (one of the friendly health care assistants) and together we explored the hospice and its grounds. On Monday it was Vanessa’s turn to push me around and this time we were accompanied by the lovely Tracey (one of the hospice’s staff nurses).

My laptop arrived back from the repair company yesterday but I had to wait until Bernie, the IT manager, was available so that he could help me set it up and put all my confidential data back on the machine. Everything is now working as it should be and the laptop is running a lot cooler. It’s a big relief to have it back because of the wealth of software and customisations that make life easier for me.

A new shower/commode chair was delivered at the hospice for me to try yesterday. This is the one I shall be taking home with me and using until the extension is built. It is significantly more comfortable than the glide about commode chair provided here at the hospice. The seat is well padded, there is a high back and head support, and the whole chair reclines making it much safer to sit on as there is no fear of falling forward. But as added safety the chair has been supplied with a safety harness which is probably just as well in my case and I am slowly losing control of my upper body as it gradually starts to fall more and more under the influence of gravity. The only problem with it is that the head support is a bit narrow and I can’t fit my ears in so I end up sitting there looking like Dumbo!

This morning, Chris (my OT with the PCT) called in to trial a new sling on me that had been ordered for when I go home. It was also an opportunity to experiment with a different handling technique for getting the sling on me whilst lying prone on the bed. What they have been doing lately is to raise the head end of the bed up which brings me into a more upright position. From here I’m then brought forward a few inches so they can pull the sling down my back. However, this apparently puts a load on the carer so today they’ve been looking at rolling me onto my side. Although I can just about tolerate this it is not very comfortable and there is still the concern that some carers may not know their own strength and cause pain around my shoulders which are becoming increasingly fragile.

Tonight I will be administered the last dose of the antibiotics that I was put on when I was diagnosed with a chest infection last week. Since then I’ve not had a recurrence of the croaky voice I had when secretions were building up on my chest and I didn’t have the energy to loosen them up. Fingers crossed that it was just an isolated incident rather than the tip of an ominous iceberg, although deep down inside I know that my breathing isn’t what it should be and that this was just an early warning sign. I wonder if that’s why I been feeling tired all day and lacking enthusiasm to eat much? Or is it more related to the hot weather we are having? The last time I ran into difficulties it was also very hot. Perhaps that’s it. Let’s hope so.

So let’s close out today with a few of the photos taken over the weekend and early part of this week. Thanks to everyone who participated. Enjoy!

Ann and I outside the conservatory where I have my meals.

Ann and I outside the conservatory and heading towards the car park.

My new wheelchair.


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