(an excerpt from my book, Stumbling Along - a Journey with the Master of Surprises (c) 2006)
Wasn’t ‘dropsy’ a name for TB or consumption in the last
century? One particular week in the
autumn of 2004 saw me declaring it a new name for an all too common MS symptom,
so I entered it into the “E.R. Domestic
Dictionary for PwMS” (People with MS)
I’m not quite decided as to just how much of my cognition
problems are down to age, my MS or just purely being dumb.đ For example, Steffan had a girlfriend once
who became almost a permanent fixture in our house but d’you think I could ever
remember her name? What is more, to make
matters even more embarrassing, I’m talking of a long-term relationship here,
not a casual two-minute fling. I ended
up calling her “wotsherface” every time I mentioned her - in her absence I
hasten to add. It’s a good way of
alienating your son, I can assure you!
I have my own vocabulary these days which only Huw
understands; it consists not just of verbal utterances but also of much
gesticulating, muttering and pacing up and down, waving my arms in Manuel of
Fawlty Towers mode.
The most catholic of entries in the "ER Domestic
Dictionary for PwMS’"is ‘thingy’. I find
myself losing a word in mid-sentence and ‘thingy’ is one which is used quite
extensively and is usually accompanied by a finger or nodding head even,
pointing in the direction of wherever the object is.
It’s also one which slithers off the tongue quite
comfortably, unlike words containing the letter “R”. I worked in the Land Registry for seven years
where we dealt with work in Shropshire.
It’s a standing joke that I can’t roll my rrrrrr’s in true Welsh
Tradition, but stick an ess-aitch (sh) in front of an “arrr” and my soft palate
becomes Loctited™ to my hard palate. Phoning Local Authorities proved to be ‘interesting’…. đ¤Ļ♀️
This reminds me of the following joke…
“Doctor, Doctor, I can’t pronounce my F’s, T’s and H’s.”
“Well you can’t say, Fairer Than That, Then.”
So this is what caused me to enter ‘dropsy’ into the “ER,
Domestic Dictionary for PwMS”………………
The whole of family life revolves around the kitchen in many
homes, but ours is too small in which to sit around the table, so it’s not
exactly the hub of the universe
here. Despite this, it’s a source of
many a tale of despair and laughter.
I’ve always loved cooking and eating (just call me Nigella,
but never call me Delia)
However, culinary activities are getting more and more
tricky as the journey continues due to hands which are as rebellious as a
testosterone-riddled teenager; they simply refuse to listen when I tell them to
do something. I’m sure that many a mum
and MSer reading this are now nodding their heads in agreement like the nodding
dog in a certain car insurance advert.
Picture an all too familiar scene; you’ve grabbed hold of a
pan full of hot food straight off the cooker and when you try to put it down you find
your hand still wrapped around it and you can’t let go.
So you’re screeching for your ever-patient husband, who is
usually out of hearing distance, or in our case, he’s totally engrossed in the
footie on telly, to come and slide the handle gently out of your hand - heaven forbid that he may try to straighten your hand because it jolly well
HURTS!
The opposite to that scenario is when you just drop
everything you try to grasp and even worse again are moments when you could
swear that something has jumped off the surface without you ever getting as far
as touching it.
I can remember one particular revolt on the part of my hands
quite clearly; I can close my eyes and see the picture unfold as if in slow
motion. There it was, a shallow glass dish
which has a plastic lid which you can put in the freezer,
microwave, dishwasher etc. In fact, you
can put it anywhere except in your rebellious and revolting hands.
One minute I was looking at it, the next minute there it was
– smashed into smithereens on the floor!
At times like these I’ve never been too sure whether to ring
Poltergeists Anonymous or Ghostbusters because I swear this must be a
paranormal experience of the MS kind, though I doubt whether incidents like
this have ever been documented. After all these years I no longer shout
“Hu-uw!” I shout “Broken glass alert!!!!!
Shut the dog in the lounge!! Kick
the cats out!! Glass - broken!! Smashed Glass!!! Glass everywhere!!”
Would you think that anyone who does not have MS would
suspect I have a histrionic personality ?
Because when I realised I couldn’t be heard, the profanities started to
emanate from my ever-so-tender, gentle and delicate female lips. đŧ
I was swearing so much that I wasn’t concerned about the
whole of the street hearing but I was living in fear of the late Mary
Whitehouse appearing and declaring me to be unfit to be a minister’s wife let
alone teacher of Sunday School children as was one of my many pleasurable duties at that
time.
H: (finally) “I heard.
Stop shouting. Right – you get
out of the way and I’ll clean it up. I
can see better than you can and when you cut yourself you always almost bleed to
death.” It’s true - I could write a tale
or twenty about ‘bleeding’ experiences.
Two evenings later Huw was in a rush to get out to a meeting
so he dished up his food whilst I was doing something else. I told him not to worry about mine because I
could dish it up myself. Could I? Pffff!
I put my rice on my plate and how this happened I really
don’t know, but the serving spoon jumped clean out of the saucepan along with
half its contents. There was Prawnthingumywotsit everywhere; on the floor, all over myself, all
over the kitchen, in fact the whole kitchen looked redder than my face. It was fortunate that Dog was in the other
room or he would have ended up looking like a bloodied bandage!
I don’t have a stock phrase for such an event so it a was
zillion decibel-ed, “Aaarrgghhhhh!” (Not bad, I thought, considering I’d lost
my voice because of a cold.)
H: Came running,
“Do you have to screech?”
E: Croaking ….. “I’m only doing a bit of self-
expression.”
H: “Well you
should have given up self-expression
at your
age. You should have got it all out of
your system
years ago.”
E: ???????????????????? (speechless for once)
Needless to say, Huw cleaned up after me once again and was
late for his meeting.
