Another distressing night. I wake up 10:30 finding it hard to breathe through the nose respirator. There was no easy rhythm to it. As each puff of air came through I seemed to have to make an enormous effort to it into my lungs and after a little while, and whilst remembering the frightening episode of the last respirator when it became unattached from the Nippy, began to panic. I managed to lash out and hit one of the alarms and attached to each side of my bed, ‘my lovely’ came to the rescue in minutes.
She quickly realised I was panicking through the inability to get sufficient air from the respirator and within seconds got me sitting up and had ripped off the respirator so I could try to begin breathing naturally. This is the second time readers will recall that this sort of thing is happened. I sat on the bed, being cradled by’ my lovely’ until I could breathe normally. This took about 15 mins. Then, she got my legs over the side of the bed and propped me up using our old sponge bed armchair, which I can use for sitting up in bed unaided , she then swapped over the respirators to put me back to the full face one, which I had abandoned a day or two before in case I had been sick with the possibility of having been drowned in my own vomit. Once she had fitted the respirator and I was breathing calmly she went through the normal process of putting me down again.
An hour or two later both heels started to become painful until they had reached an unbearable level. I hung on as long as I possibly could but had no choice but to ring for Alice yet again, and turn me in the bed, rearranging my feet on a cushion, in the hope that that would help, as the change of position made me feel as though the heels will probably be okay, Alice went back to bed, but within 20 min or so, I had no choice but to ring for her again. having been in agony from the time she had left previously. Another change of position and a pillow placed between my legs which alleviated the severe pain for a short period but then it began to build up again. I had no choice but to ring’
my lovely” yet again. She rearranged me that there so that there were no pressure on the heels and then went back to bed for the last 20 min of her almost sleepless night.
I felt really bad at having messed up another of’ ‘my lovely’ nights sleep. Certainly there’s never been one as bad as that. If I had had to be taken to hospital for the night, as had previously been suggested, I think I would have gone mad. I know how the wonderful nursing staff are in both Addenbrookes and Papworth hospitals but even their patience would have been tried once or twice too often over the night and I think I would have just had to have lain there, moaning until the day shift came on at seven o’clock.
Everyone says what a wonderful person Alice is and of that there can be no doubt. These particular incidents being a good example of her care and selfishness. I really do not need to be told how lucky I am to have such a wonderful wife, I know only too well how blessed I am in that direction. However, for Alice’s sake, as well of my own, a resolution of these nightly problems must be resolved very quickly, before Alice becomes totally exhausted by the lack of sleep.
I went through the usual ‘getting up’ procedure with Louise and Sam, two of my Ross Nursing carers. They got me into my study chair where I struggled for almost 4 hours to update my blog. Moving backwards and forwards to correct the text as I went along I found quite exhausting, as I did even raising my hands to wipe my nose, which was actually running. So I think I have been severely weakened by the events of past few days events, coupled with the fact that I had nothing substantial to eat for days,
In fact, any small movement like extricating my handkerchief under one of my legs, sitting in the study chair is making me gasp for air which takes a minute or so to settle down. I think I might be suffering from a post traumatic stress disorder following the second close shave last evening when I panicked over not getting sufficient air through the respirator. Even, as I accept, this may be psychosomatic there is still little I can do, at this stage, to convince myself that I won’t be caught out again and this causes me to gasp for air. I suppose that I am fearful of finding myself in the same position again but not being able to call for help or due to my useless hands and weak arms, struggle and find I cannot remove my mask. Frankly, it’s a bit of a nightmare which I have somehow got to get through and rationalise or find myself almost permanently on the respirator.
Whereas last week I was really looking forward to my days out at Lord’s with my cricketing pals and was fairly confident that I would somehow struggled through to August, I am already sceptical about the two days already organised for next weekend. I know I must at least take my respirator with me.
I’m sorry that this is such a dreary entry but when I started the blog four years or so ago, I promised I would tell it as it is, but MND sufferers and carers reading this must remember that we are all different. What affects one patient in a certain way will not affect another in the same way..
For a few moments diversion, click here to watch a short video of this magnificent bird of bird, the osprey . Osprey on the hunt.