16 June 2012

Posted by DMC on 17 June 2012 in Diary |

I had a particularly good night’s sleep, in fact the best yet since we have had the benefit of the night carers. We also had a new day carer from Ross Nursing, a second blonde Paula. She will have to be Paula number two (not Bert, as she suggested!)

I must say. I am impressed with the follow-up from my quarterly assessment both at Addenbrookes and Papworth. In the last Addenbrooke one there was mention of a slight deterioration in my speech and today I received a call from Tom (?) offering to drop in and discuss any problems, I might have, bearing in mind it is almost my only means of communication with the outside world. This was a timely call as I have become seriously concerned about maintaining this blog if I cannot enunciate clearly enough to use my Dragon, voice activation. An appointment has been arranged.

Jayne ‘ the sheep’ would normally have ‘baby sat’ me today but was unavailable so I was lucky to get Paul’ the computer’ who, as usual, kindly went through my most recent blog entries, removing tables or any other hidden instruction which can confuse subsequent entries.

Doctor Michael Davies returned my call concerning my so-called panic attacks I have suffered using the respirator. Certainly the first was the most dramatic and I really panicked when I I could not get any air at all and my nose and mouth were covered by the airtight respirator, (to be fair I have been told that the respirator is not entirely airtight and it is possible to breathe in and out through the side flaps. I think I would have to try this out for myself I place any reliance on it). As Michael says it will take some time to get back the confidence I obviously lost as a result of the accident. Before that I had taken the respirator for granted as a lifesaver whereas now I am only too aware how easily it can become a killer.

As I have explained yesterday that, as a result of a dramatic event in my early childhood , I am still frightened of the dark. Now it is even worse as I wear an airline eye shade to cushion the respirator and, as a result, I cannot see. Anyway, Michael was very reassuring, in particular, about my confidence returning wearing the respirator.

The worst that could happen is I have another panic attack, through temporary loss of air, but when I come round again my body will have kicked in and started breathing normally.

Much of this questioning was in anticipation of returning to my golf club lunches, and later on to Lord’s for cricket. ‘ My lovely’ is keen that I take a carer to accompany me on both expeditions but it really isn’t that easy. Whoever they are they would find it embarrassing to sit outside the club with the boys and then there is the expense which Alice gets very cross each time I mention it. My approach is to pick up one of my pals and make sure that he understands how the respirator works and rely on him.

The weather forecast for next Tuesday looks very promising – 19°C and only a 4 mph, south easterly breeze – so maybe I will be able to make this my second visit, to the club, this year. No sooner had I booked Ollie’s Friendly Wheelchair Service than John Gray reminded me next week Tuesday was on a Monday, as the Lucifer’s had booked the whole of Tuesday. Looking at the weather forecast for the following Tuesday, it looks less appealing and colder than next week, so maybe another two or three weeks will have to go by before I get back to my routine, of going to the golf club, on Tuesdays.

The lavatory side of things is probably the last vestige of dignity one has left, and once you have to rely upon others to help you including cleaning up you afterwards, you realise that there is no longer any aspect of your physical life which is private. To wear a pad, instead of underpants, is embarrassing enough, even if, as in my case I have never had the need to use them. Your told by sympathetic carers that it is just for the occasion when you might wake in the middle of the night with an upset tummy and there is no way you could be hoisted out of bed at that time of the morning. The answer is just to ‘ use your pad’. The same advice is given if you are out in your electric wheelchair and it is not convenient to find a hoist and be hoisted onto a commode. Of course, the convenience of the pad becomes obvious on such occasions but the thought of it is distressing to someone who was always been , punctillous about cleanliness. Anyway to show that we can always laugh at ourselves, even over such personal matters, click here, and be amused by this little video

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