Yummy, crisps and morphine!

Hello everybody,
We still have a Winter Wonderland here. I am rather pleased to report that someone must have been out with a metaphorical pooper-scooper overnight as some of the problems described yesterday have eased somewhat. Most importantly, my swallow seems to have recovered to almost its previous strength although I am now probably super cautious about what I eat and drink. However when sat watching an episode of Green Wing with Louise I had a really intense craving for crisps, not very helpful I know!

Whilst last night was far from settled, I had a couple of extra hours in bed this morning which has left me feeling less fatigued. I’m not sure if the extra sleep is a result of being so tired or the fact that we had to crack into our rescue drug, a form of morphine. This was required to treat a recurring and unusual symptom. Generally what happens is that throughout my extremities I can feel a tremble which proceeds through the length of my arms and legs and up my torso. The strange thing is that this tremble is not manifested physically but must simply be a memory of movement. This is then physically manifested as a powerful and uncontrollable shudder through my neck and jaw which clenches tightly shut. I can only liken it to when you bend down and try to lift something very heavy, like a car! This can and often does last for a number of hours making sleep impossible, until it either subsides on its own or I succumb to the sedatives, as was the case last night.

Winter_image3_640.jpg

I thought it might be worth telling you about some of the more unusual symptoms I have experienced.  I am sure that these are not unique to motor neurone disease and are suffered by many paralysed people.  Often times as I sit in my chair, I can feel my feet swinging back and forth below me when clearly they are firmly planted in the foot rest.  On one occasion, I was sat in my chair with the computer on a table cantilevered over me.  Louise was operating the laptop using the little tablet to control the mouse and I could feel in the tip of my index finger every time she moved her’s; every motion and even when her finger ran into the raised edges of the tablet.

One of the strangest symptoms to have occurred thus far is the inability to understand the relationship of one limb to another. When I am covered up it is often impossible for me to determine where one hand is in relation to the other, for example. My fingers can feel painfully curled up when in fact they are perfectly laid upon my thighs. My legs can be crossed as far as I’m concerned but my feet will be a foot and a half apart in reality. While this is quite entertaining when such symptoms initially occurr, you will appreciate how infuriating it is after some time.

I hope the above is of interest to you, particularly as they are less well-known than the condition itself. Rather than overload you now, I will tell you about the joys of nerve pain another time.

On another subject, Oscar is currently enjoying his third outing in the snow with his mum and Granny Rosie. They have gone for a bit of a walk so I’ll give you a full report of how he got on tomorrow. I can however tell you that his behaviour has progressed into that of a stroppy teenager!

Also tomorrow I hope to be in a position to ask your help in raising awareness further, I just need to clear it with a few people first. Watch this space.
All my love,
Neil (slightly more awake) x


Neil’s exhaustion now seemed to take a day of recovery in bed, about every second or third day. Some days when he woke up I could just tell that he would ask me to cancel the Palliative Care Team as he would not be moving from the bed. It seemed to suddenly be part of our routine, just like everything else had crept in, we would look back and some things had become the norm, without us even realising.

The jaw clenching symptom he described here, made him very frustrated, partly because he felt as though it were psychosomatic, as if he was creating the symptom with his mind. I remember him trying to describe it to me and telling me that his jaw was clenched. He would ask me if I could see his neck muscle working the way he describes here, as if he were straining to lift a heavy weight, but there was no sign of it. I think the frustration was born out of the idea the disease was now messing with his mind and playing tricks with his senses, and yet again he wasn’t sure if it was another progression of the disease or a side effect from medication. – Louise (2013)

Do you like this post?

Showing 2 reactions


@breathingfilm tweeted this page. 2013-05-28 18:56:12 +0100
'Yummy, crisps and morphine!' Or how #MND played tricks on Neil's mind... #Plattitude http://www.iambreathingfilm.com/yummy_crisps_and_morphine?recruiter_id=2
commented 2013-05-28 18:55:47 +0100
Comments on Neil’s original post:

buddy
February 3, 2009 at 7:28 pm
Hi, still no snow here, like I said its better outside “your!” window.. lol .

Glad to hear your feeling on the up side today, apart from the obvious, over active nerves and vague appendages.
As designs go, the human body is crap.
(the Architect really rushed the job)
The program wear is far to complicated, the his and her software is incompatible, it’s too difficult to update, and the box it comes in is far too fragile.
We are a bit like a DVD, the information lasts for eons but the plastic case we come in is broken 5secons after we open it.

An the new improved virus free and user friendly version wont be available for another millennium. Just like “window’s version 2525

“Raising awareness further” ???

To be continued…
“dam” hate it when that happens,
well now you’ve built up the suspense you’ll have to deliver.
Or there’ll be trouble…lol
Love and best wishes to you all.
Neil.

Andrea Kler
February 3, 2009 at 11:32 pm
Hi Neil

You must be thinking, OMG here she is again!!

You sound quite ‘up’ today which is good to hear.

This raising awareness further sounds good and you know you can count me in to do whatever it takes.

Hope it wont be long before I see you again.

Love to you and your lovely family.

Take care

Andy xxxxx

Douglas
February 4, 2009 at 3:09 pm
You could always partake in the latest celeb diet regime which involves just licking crisps.

There is an article in the new scientist about your phantom sensation thing that you may find interesting http://www.newscientist.com/article/mg20126924.900-brain-trick-makes-robot-hand-feel-real.html

Cheers

Elizabeth Wight
February 6, 2009 at 1:56 pm
Hi Neil
If the downside wasn’t there,this would be comedy/scific! When I worked with disabled people (OT) I met a few war-wounded (yes,WWII!)
limbless men who reported – often with frightening humour – details about their legs doing funny things….legs they hadn’t had for 20 or even 30 years! But you should tell us these things…for the record, medical history, medical science!

We still haven’t had enough snow here to feel it’s real winter…not doing without the damarts though!
Keep the reports coming….love, Liz
THE THIN SPACE BETWEEN LIFE AND DEATH
Film by Emma Davie & Morag McKinnon
Watch it online
Order the DVD
Pay it Forward
Make a donation
STEM CELL REVOLUTIONS