June
2016 Sunshine walking and Back to COGs

Sunday June 5th to Wednesday June 8th

Hi all, and welcome back. First
off, and much against my first inclinations but giving in to what I
hope is my better judgement, a plea for advice/guidance from the
wealth of experience out there. As I said in the last blog, I am
trying to note changes and, as I have probably mentioned before, I do
not tend to bother the GP with things that seem DementiaLand related,
as he cannot ‘fix’ this. So why trouble him and stress me? Again, as
mentioned last time, I have been shaking a bit (lot) lately and,
being Wayne, just make it into a joke. My walk friends on the Friday
now joke about ‘who are you going to share your biscuits with this
time?’, as I am likely to launch a bit of biscuit or slop coffee
around. All very well and a good laugh, but it is getting more
frequent and more forceful. I could be accused of throwing stuff?????
So, is this a new phase kicking in? Is it expected? Is it something
to worry about? I have already scared myself by trying to research,
and I found something called ‘Parkinson’s Dementia’, so am worried
and taking it a bit (only a little bit) more seriously now. Enough of
that till later; on with the good stuff

Here
we are on a gorgeous sunny Sunday, and
on the way out for a bus trip and walk to make up for me missing
yesterday. During the journey, and I cannot recall the start of the
conversation, I made Dave laugh when I told him that I have not got
time for death. When Dr Death comes I will just say ‘sorry mate, ya
names not on the list; I’m not coming in!’ He will just have to get
to the back of the queue, as there is far too much left for me to do
before there is any chance of that kind of long rest.

We
went to Maidstone for a walk around a big park called Mote. I love
this park because of a fairly large lake that can be walked around.
Maidstone, if you remember (ha ha) from a couple of weeks back, is
the home of ‘not open on Monday’, but today it was and this being
Sunday??? Really very odd, these Kent people and places. We did an
hour walk, then tracked down our beloved big breakfast before a
couple more hours walking. One end of the park was beautiful, and
quiet; almost tranquil as we strolled around amid trees and uncut
grass. The other end, when we got there, was flat and open, full of
laughing, screaming, crying kids, hurtling and barking dogs, buzzing
remote control boats, loads of noise, fuss, rubbish, crowds etc.
Although we had planned for a long walk on the river towpath, the
sudden stress and anxiety caused by the bedlam knocked me out. And I
was then very tired and had no choice but to end the day and get home
fast, so that I could sleep. The journey home was tough, as I drifted
in and out of sleep on the bus. It was still only mid-afternoon? Just
to show what a weird kind of place Maidstone must be, the fit tracker
on the new smart phone stopped tracking the journey when we entered
the park and picked up again when we left. Very odd? Maybe the place
does not even exist outside of my head and it would not be the only
place like that???

Monday,
and I went back on the silly walk that I had done once before, and
which I did not enjoy, even then. So why go again? With this one,
people just do their own thing and march off at speed. Very little
social stuff goes on, and as it is mostly built up areas, even that
is a negative. But it still looks very nice the other side of the
river so
I must get over there for a walk/explore soon. The walk is so fast,
it is more like jogging. And that confused my poor smart phone
fitness tracker so much it thought I was running for part of the way
(as if?). I must find a nicer walk than this or latch onto a specific
group and stick with them, rather than trying to do my usual floating
around to find new victims to talk at. Why do I do this? Answers on a
postcard please.

At
the end of the walk, those who do not immediately jump in cars and
clear off, disperse into various cafes rather than going together as
a social group. I went with a small group of those I know from the
Friday walk. I was still not focussed, and found myself drifting in
and out of conversations. And then suddenly they were leaving, which
made me feel very vulnerable and anxious. So rather than risk trying
to get home alone from an unusual place, I went on another long walk
for the afternoon with Bob and a few of his group. That felt like a
safer option at the time, as it meant I would at least get guided
back onto home turf afterwards. I was not physically tired at this
time, just unfocussed so we did another four hours, but thankfully
this was mostly countryside. Nice, but I was in shorts and t-shirt
for the morning town walk, not dressed for wading in
stinging-nettles. That kept me very focussed though, and again we saw
some good things.

I
just thought that, after so many mentions of Bob over the last few
episodes, it was maybe time to introduce him; so here is Bob!

[pic
of bob]

Most
of the organised Tuesday walks are either too far, too long, or start
too late to enable me to fit them in with the twice monthly afternoon
commitments I have. But one is along the river in our local country
park, so it fits time-wise and also is really good being away from
roads. Lovely, almost 100% off-road walking. But for some reason, on
the way back to the start point, we did a road when there is a plenty
good enough off-road track available. I do not understand how that is
a ‘health walk’, playing dodge the lorries and choking on fumes, when
we could have been away from the road and on a grass track?? It took
1hr 15minutes to do the one hour walk, showing that I must have been
way below usual pace (certainly no running) and, by the end, was
tired yet again. Getting pretty fed up with this. No time for napping
today, though I have the dementia cafe to attend with many others I
now know well.

A
great afternoon was spent, with a good hour of it talking with
another vascular dementia sufferer about the many, many varied
symptoms we have encountered over the years. Neither of us put memory
in as a major factor, as most things are attitudes, character blips,
personality changes, mood swings, physical mishaps etc. And the
memory loss is very low on the priority list, as that causes the
fewest and least problematic issues. As others joined our
exploration, it seemed funny at the time how major troubles with
white crockery keep coming up lately. Must be a visual problem thing,
and is a far more common issue than I had thought. White crockery on
white table cloths really is asking for trouble! Talking about
crockery, I keep getting told I am difficult because I want a ‘mug’
of tea not a ‘cup’ of coffee. I’m English, so surely tea is the norm,
not coffee. Or am I just old and out of touch? Came out of the church
hall and, surprise, surprise! it is raining again.

Late
afternoon and, upon checking Talking Point, I saw a post asking after
me from three days ago. I had not even clicked that it was me!
Replied to it, with thanks to those kind souls who had noticed I had
gone missing. Then I just sat there looking at the post, waiting for
it to ‘do’ something. No idea what was going through the black void
of my mind at that time. Finally realised that I needed to hit
‘submit’ if I wanted anything to happen. After eventually getting
that right, I lost another couple of hours to nothing and nowhere. If
time continues to keep slipping away like this, I will be offering a
reward for its safe return!

I
gave up fighting quite early this evening and decided to ‘submit’, as
I have a big day back at the COGS club tomorrow. Still cannot
remember his name???

It
turned out to be another very disturbed night and, during the early
hours, I did some sound bites filled with frustration and anger. I
really cannot get why I keep waking when I am so, so tired. It makes
no sense to me. And I am sure that this making no sense is not due to
me being in a nonsense place at the moment, it IS because it makes no
sense! In the morning I made a silly mistake with the alarm, and
turned it off instead of activating ‘snooze’. At least I was just
about with it enough and knew of the mistake, so I got up before
risking crashing out again. As per usual, when that sort of thing
happens to anyone, I bet that sleep for the whole day would have been
easy???

So
it was only the start of the day, I was already extremely tired and
had quite a struggle on the bus, but I got there. The buzz of being
back at the club made me feel better for a short time, but I kept
drifting lots and missing stuff. Sometimes I was central to the
conversation, and then so far outside, it was as if I’d entered
another universe. I don’t think it was too noticeable, but was so
drifty that I could not tell.

Enjoyed it when the Wednesday facilitator told me she met Mrs chatterbox and
her friend at another cogs venue earlier this week. Obviously, as I
had not mentioned names, she did not know for sure but guessed it was
the person I’d mentioned (just in passing) in previous blog posts.
She now fully understands my views about the lady, and was relieved
to the max when Mrs C left the group early, having decided she did
not like it? We compared notes regarding both hers and her friend’s
names to confirm it was one and the same person. She better not turn
up here????

The
day was very hot and dry, but I am not moaning. Kept drinking lots
and thinking (when I was capable of thoughts) that all this liquid
will give my body yet another reason to have me up and awake all
night!. I did not eat so much as usual because of being so tired and
not enjoying it. Also, I do not remember the activities of the day,
but again, ‘feel’ like I had a good time. Just wanted to sleep on the
bus, as it was so hot, but I just about got home. Quick look at TP.
Struggling badly, no mental or visual focus. Desperately want to do
more and write stuff, but am just totally listless. Tried a couple of
hours sleep with the mind, and would see how I was later. There was
no later, as I just ‘passed’ the evening, not really sleeping but not
awake either. I just existed somewhere in the mists of DementiaLand.

I
made three voice-recordings; one during the late evening, one in the
middle of the night, and one very early morning as my mood
progressively worsened. My original intention was to try and put into
words what seemed to be going on, but as I got more tired, more
frustrated and more angry, I lost track of the target. These are the
three voice-recordings, totalling nearly five minutes, made over the
course of that night.

[night
chat recording]

Although
I am typing these notes now, a couple of days later, nothing much has
changed. I am still not sleeping right, still frustrated by it, and
fed up because it is 04:02 A bloody M.

GoodNIGHT!!!!!!!!

Wayne
x