Yet another hospital visit, this time for my quarterly assessment with the MND team at Addenbrookes. This time I had the boss himself Chris (Dr Chris Allen) and our lovely MND coordinator, Jo (Joanna Sassons). Quite honestly I felt this was the most useful session we have had yet. They really did go into a lot of detail about my pain and ways of alleviating it, not only about changing some of the medication but considering new beds or mattresses and so on, for which Jo will arrange for someone to come around here and start that process.
I did make it clear however that the one thing I wish to avoid was the air mattress. I know that this is almost a guarantee against pressure sores but it is a horrid thing to lie on if you have any movement at all,. I suspect it is the same feeling as a fly stuck on a flypaper. When I was in hospital with a broken leg a couple of years ago, they put me onto one of these air mattresses but I panicked in the middle of the night finding myself totally unable to move.
I have always been fearful of the dark. I know it sounds ridiculous but when I was a young child my great-grandfather came into my bedroom sleepwalking and fell over me so that I woke up to grab a large hairy arm, and from that point on, I have always been nervous of the dark. As a child I would sleep with the sheets and blankets tucked over my head. Even now, when Alice was away I would check under the bed and in the wardrobes before locking the doors. I know it’s totally logical and there is no bogeyman who is going to suddenly jump out on me but now being unable to move my legs and the rest of me being pinned down by the weight of the blankets and with my eyes covered under an eye shade, used in conjunction with the respirator to stop my nose and getting sore, I feel at my most vulnerable and therefore, in addition, could not cope with the air mattress and being totally immobilised. On the occasion that I was put onto one, the hospital were good enough to change it for me in the middle of the night (at 02.00). Joe says our other types as well as other beds that they could consider
In addition to that Chris and Jo between gave some thought to changing some of my medication, most particularly to deal with the pain. For example, introducing a seven day pain patch and prescribing soluble paracetamol instead of those huge tablets which I’m always fearful would get stuck in my throat. They were also a little concerned about my weight loss observed at Papworth Hospital (8 Kg since September) and as a result have prescribed some calorie medication. I must say if one has to put on weight it’s pretty dull way of doing it instead of all the delicious things I could eat to achieve the same effect. In any case’ my lovely’ certainly does not notice me getting any lighter when she has to turn me three times a night. All in all a good session and one that has confirmed that I am in good hands with people who really care.
I must mention the transport to and from the hospital as I have had some criticism of this in the past. Today the paramedic was Wendy, who had been here before. First of all she was kind enough to telephone us in the morning saying she was running a little late and letting us know the time she will be with this. That is a very first time anybody has done that. When it came to coming home I had estimated the length of time for my consultation and sure enough Wendy was sitting outside waiting for me. She and her driver partner had decided they would take me home first and then return to the hospital for the other patient who rode with me going to the hospital earlier that day. As he was going to take at least another hour, Wendy and her colleague decided it would be kinder to dispatch me first and go back for other gentleman. Again another first whether patient’s wishes came before their own convenience. In the past I was the one who would have to wait for two or three hours until all of the patients who were travelling together were ready to go. For this I say to Wendy and her colleague, thank you so much. It was refreshing to meet such a kind couple.
To mar the day slightly when I returned and plugged in my for some odd reason it would not boot up. It seems that my Dragon, voice activation programme, and become corrupted merely being taken to the hospital (where I read my book for a little while). I did manage to put up the computer and’ repair it’ but it still insisted that Dragon was corrupt and I should contact my technical team. I rang Dragon and they said they would put written instructions to me on an e-mail.
After my visit to Addenbrookes today I thought this little story about medical humour might be appropriate. Click here.