Early
May

So
here we are into May and one third through the year already. Scary
that it is not just Alzheimer’s sufferers that lose time so easily.
Maybe it is in fact better for us as we expect nothing different the
rest of you are shocked to find that so many days, 121 of them, have
already disappeared into oblivion and you can only recall a few of
them. Welcome to my world and you are most welcome to it.

May
day, the Sunday, followed so many just before it and vanished without
a trace. Probably because nothing worth wasting a precious brain cell
on actually happened. The Monday being a Bank Holiday meant nearly
everything stops or grinds to almost halt. The country is on holiday
so there are hardly any buses or trains for the millions of extra
people to use, even less than there are during the middle of a week
day when most people are in work and not trying to travel. Logical!
It’s a bit like most of the bank tellers going to lunch at the time
everyone comes out of work to use the bank? Suppose that is why they
need bank holidays to make up for all the hard work they do during
the times no-one is in the bank????? Sorry if you work in a bank this
is just how I see it and you do have the right to
reply/explain/retaliate.

Having
rested my ribs enough, not that my ribs thought so, I dragged poor
Dave out for a morning walk that I did not usually go on as it was
the only one scheduled for this bank holiday. 20 or so people turned
up for the walk which rather surprised the organiser as he had
cancelled it but came along just in case some had not got the
message. The turn out suggested the message did not travel well. The
walk was ok but too fast. Not because of me being less than 100% but
it gave no chance to enjoy any scenery so Dave and I will go back and
do it gain when we can stop and read information boards and see the
sights etc. also the walkers quickly divided into groups (cliques)
and the social side was not there so for me a pointless exercise as
it is just exercise and I can do that better on my bike. I go group
walking for the social interaction and mental stimulation not for
fitness.

Comments
left by wonderful peeps on TP really touched me deeply and I had to
pull myself together enough to post a mushy note to them despite my
mental state tumbling during the afternoon dragging me downwards
fast.

As
some may have missed my thank you, I repeat the important bit
here:-
“I
have spent a very nice afternoon/evening with mate/neighbour Dave and
have tried hard to describe how I can feel the ‘fog’ closing in at
this very moment. My speech, my speed of thought, my ability to find
words, my capability to find and use the correct words all changed
dramatically and for the worse as 5 hours passed by. I recognise
these symptoms from several years of past experience and have
therefore spent the last hour or so doing this as I know it will be
impossible to do over the next couple/few days.
Already
textual burbling….. I just want to thank you all so very much even
though the words do not touch upon being able to convey how you make
me feel. My only way of giving something back is to post/blog as best
I can whenever possible and that I will do”.

I
sort of recognise the feelings experienced during the afternoon and
evening as a precursor to my remote days. I think that in past blogs
I have mentioned this remoteness but not sure if I have or even can
describe it properly. Rather than being me, I am watching me, as if I
am a character in a game being operated by me from a slightly removed
position. As the time moves on the distance between me (the operator)
and me (the character) increases and with that increase the
connectivity between us decreases. I care less and am effected
mentally and emotionally less by what I see happening to the
character. Eventually I am just a viewer not an operator. At the time
I am so removed that it does not really bother me what happens but
afterwards I worry that I am vulnerable to getting run over or doing
or saying something stupid ( well more stupid than usual anyway!).
Despite this I did sleep ok last night. Maybe the ribs were hurting
the character but they were not bothering me so ha!

Another
post needed to be got out of my head to start the day Tuesday, again
in case it was missed:-

“Mental
Image
as
I awoke this morning I had a mental image planted in my minds eye. By
mental image I mean an image in my brain not a mad image but maybe it
is a bit of both, you decide and thanks for humouring me.
I
saw a picture/video of how I believe we interact. I have fallen in to
a wide murky river which has sides so steep that it is impossible to
pull me back out and I am condemned to just float along at the mercy
of the current for the rest of time. You my dear friends are on the
tow-path keeping pace with the flow. When the river is warm, clean &
gentle you tell me to enjoy the experience and go with the flow. When
the water is cooling, sparkling and fresh you tell me to have fun but
be careful. When the current turns to a dark raging torrent pounding
rocks you throw lines out which I can grab when I need to and be
pulled into the safer waters at the side. We cannot get me out nor
stop the flow but you stabilise me long enough so that I can rest,
wait for the torrent to subside, then the lines release and I float
on unrestrained.”

This
waking dream is quite in keeping with the ‘remote’ syndrome as it is
like watching a video of me rather than experiencing so it just
confirmed that I am still in the remote place/space.

The
CST group was about reminiscing and orientation (I thought that is
where the orient express train stopped!), but as I have only been in
this area 11 months the historic photos did nothing for me but that
is not their fault. Because of me feeling rather disconnected from me
and everything else as a continuation of the mental crash yesterday
afternoon & evening, I was not really up to much of a challenge
so not connecting with the session was not a problem, or at least not
an additional problem. After the session I became a victim of
dementia as the arrangements to go with 3 other group members to a
new, to me, dementia cafe, had been ‘forgotten’ by them so I went
alone. This did not seem much of a deal until I tried to enter the
hall that the meeting is in. I was 1 minute past the scheduled start
time, later found that just about everyone turns up 15 minutes early,
I was already very anxious about something new with new people. The
noise coming from the room full of strangers made me wary and I was a
heart beat from running away when I was spotted and encouraged in. 4
points to note from the afternoon, negatives of it being a stressful
entry and not welcoming and the second that when I mentioned that I
was told that everyone is new at sometime. Being selfish I do not
care about them then I felt that I had not been treated as me, an
individual with my anxieties. Tell me please, am I being over
sensitive and should toughen up? The positives far outweigh those
negatives though in that I have been invited to start attending the
dementia pressure group next month AND our local county dementia
champion, that I have mentioned before, is being asked if she will
mentor me around her parliamentary visits etc. great for me and
hopefully long term my voice can be a benefit to many others but I am
still a bit frustrated that such help & support is not available
for everyone. On the way home the stupid character me got off 2 stops
early and I had to go with him/me to keep an eye out for him/me.

No
surprise, very tired by the end of the day.

On
the Wednesday I did the short, note short, organised walk of 30
minutes locally then enjoyed an hour of sitting around drinking
coffee and chatting about walks and weather with the others. Still
being good and by now feeling good I collected Dave in the afternoon,
skipped the usual 10 pin bowling and wandered the shops trying to
find a lockable metal case for important paperwork. I am hoping to
find something with 2 different locks so that I can give 1 key to
Dave thus stopping me from unknowingly messing with contents and
losing stuff at sometime in the future. We have failed to find such a
thing so far. Now please don’t think I/we spend all our time in fast
food outlets following last weeks KFC excursion, but we went into
Burger-king for coffees. On the wall were 2 big signs. “FRESHLY
GRILLED OVER OPEN FLAME SINCE 1954”, I was very impressed that it
has not burnt yet! Also, “THE WHOPPER – 100% PURE BEEF FRESHLY
FLAME GRILLED FOR YOU SINCE 1957”, and I was sorely tempted to go
and ask for MY whopper, not A whooper but MY whooper that they have
been grilling for ME since 1957.

On
our way home and while trying desperately to navigate the high street
crowds, we just avoided a young guy dressed in a bright red
sweatshirt who was trying to sell or promote something and
desperately tried talking to us. Several metres further on a
similarly dressed young girl tried to stand in front of us and asked
politely with an American accent “how’s your day been?” Dave
replied with ok to which she said “well I’m sure I can make it
better”. After another couple of paces we both turned to look at
her with surprise on our faces which was nothing compared to the
embarrassment plastered across her face as the realisation of what
she had said hit her.

Absolutely
wonderful thing the English language and it will be such a painful
day when I am no longer able to use it or abuse it!!!!!

Sorry
I let the side down today, Thursday. Putting up with the self
obsessed facilitator I do not like plus having Mrs. Chatterbox
talking non stop through everything we were doing proved too much for
my current fragile mind state so I swore and walked out! I am not
doing any more Thursdays unless the facilitators take control of the
group back from her and talk about it on a Tuesday as a group
discussion point. When the next flight of pigs go over!!

Thanks
for your attention peeps catch ya soon.

Wayne