Sunday, June 26th 2011

Life at the hospice

It’s been a couple of weeks since I last gave you an update on how things are progressing here at the hospice so I thought I would spend the afternoon bringing you up to date.

My health continues to decline and for a while at least threw a new surprise at me in the form of heart palpitations which persisted for four nights. Not recalling ever experiencing this it was rather frightening waking up in the early hours of the morning to find my chest pounding away and not even in a smooth rhythm but rather erratic. The cure was found when we removed all the tablets I was taking in the evenings. Phew! The last thing I need on top of everything else is a dodgy ticker! As for the tablets, well I can live without them as they are not critical. In fact I’ve just decided to stop taking Riluzole altogether after being on it since 2007 as I now feel that any benefit it could have given me is now behind me. In fact everything that I have read about it suggests that at most it will give you another 2 to 3 months of extra life. That’s one less thing to worry about.

I’m still experiencing problems breathing particularly when sitting upright and I’ve already had a couple of minor frights when it felt like my breathing had rapidly declined and I was starting to struggle for breath. For this reason I have become very wary about going anywhere in the wheelchair for fear of running out of breath. Consequently most of the past couple of weeks have been spent in bed although not always in my room. On a couple of occasions the staff wheeled my bed into the conservatory so I could enjoy a change of view.

I’m really grateful that I’m allowed to use my computer at the hospice. Without it I have no idea what I would do all day other than get bored. Oh and thank you Jason and Chery for those lovely earphones you bought me last year. They are really coming into their own lately as they enable me to listen to music whilst working away without speakers interrupting the microphone. Having a good selection of electronic books and magazines has also kept my mind entertained and engaged.

Working busily in the background the folks at the hospice and my care agency have been busy arranging extended care for me for when I go home. Yes after a long battle to maintain some independence I am moving to 24 hour care in my own home. I’m sure my family will be relieved to hear this! Truthfully so am I now that the disease has reached the state it has. So this will be my last weekend at the hospice. I am due to leave on Tuesday although this has not yet been confirmed.

I’ll leave you with a few pictures that Suja kindly took of me working on my computer recently.

In bed at St Michaels Hospice. 17th of June 2011In bed at St Michaels Hospice. 17th of June 2011

 

In bed at St Michaels Hospice. 17th of June 2011

In bed at St Michaels Hospice. 17th of June 2011

Mark

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