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!

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