Why I'm angry all the time

I never write these posts on Saturdays.

I woke up at 9. NINE! That's such a lie-in. J was out last night with a friend. No text as to an eta, but that's normal. 

Stanley couldn't or wouldn't grasp that his Mummy was coming home. And the fireworks were not conducive to his relaxation. The slightest noise was setting him off, so I waited up with him, trying to calm him. J got home around 12.15. 

I then took a while to get to sleep.

But back to today, I woke up in a really good mood. So what happened then?

I don't know. Something made me really angry: full of inner rage. 

I really busied myself - I cleaned the window frames, put the cellophane on the windows for the winter and used the hairdryer to get the creases out which was not wholly successful - even had to take the curtains off too. 

I also mowed the grass. I repaired the flex on the hairdryer. Little things.

I thought this would make me feel good; after all I was achieving things and not wasting my day. 

I guess J relaxing and not taking in what I was doing was slightly grating - how dare she not appreciate my toiling for the good of the house! 

I reminded myself she's worked a 50 hour week. She's allowed to relax.

J was at the hairdressers from 10 till 2. Mmn. I'm really angry.

I'm still at a loss why I'm feeling this way.

The Semantic Variant hasn't really taken hold, but the mood swings are awful. It's Behavioural Variant I'm struggling with. My Frontal Lobe is being eroded - eaten away - and I'm finding it so difficult to join in socially where I used to so 

What’s on the TV? Rupaul's Drag Race, Strictly Come Dancing, and variations on those themes. I can’t join in with any of those. Only Murders in the Building is the exception which we all like watching. 

I can't do the frenetic, camp, fizz anymore, that's for sure. It means I spend more time on my own in the house than I used to.

I'm not perfect. J does the cooking: I clear up. It always has been and it's getting more challenging. Things are left habitually, without malice I've come to understand,  but it's just never-ending.

And of course, they feel they're tiptoeing around me, which of course they are. 

Apparently I’m leaving the oven on and the toilet seat up when I’m urinating. 

It's good to know this stuff. I can then work on these things.

Life is a balance and it's about choosing your battles.

Anyway, I sometimes feel my points of view are quickly dismissed in this house. Maybe that's the reason I get angry. 

It feels like it's me vs the females at times. Or me vs the non-demented at the least.

And there are plenty of people without dementia who can be just plain wrong. 

Many of whom are female.

Which proves it.

What do you do to relax?

John Taverner, exercise,  this video (below)? I'm much calmer on my own watching this CGI interior listening to the auto-Jazz in the background. Maybe Putin goes to bed listening to this. Maybe not.

Aside from walking the dog I need to do some proper exercise. My body's atrophied since giving up work. I haven't lost as much weight either as I thought I would since giving up alcohol, which is disappointing. I guess that's in part my age and a more sedentary life. 

I am not going to the gym. I used to be a gym-addict in my 20s. I went again for a few months in my late 40s. I can't stand the places.

Not sure the knees or ankles will stand running again. 

Swimming is my favourite exercise - wonderful flow activity with zero impact, but can you find a decent pool in this country?

No, is the answer you were looking for.

Dungeons and Dragons

Yes. You were waiting for that. And one can hardly blame you.

That's you that is.

So, Rick's pub is unavailable until 4pm so I've cleared it with the females and the 5 goblins will come here, to the dining room. I think the girls will make themselves scarce if they can help it. 

We can be quite loud and smelly. 

More fun in a Lovecraftian-horror, set in an epic-fantasy world akin to our own European Gothic-Rennaissance. How many boxes does that tick?

It really is proving to be one of the best D&D campaigns I've ever run - 'hugely exiting and full of peril'. Sounds like a modern film rating!

So we should have some fun tomorrow.

J and I love fantasy and sci-fi - X profoundly doesn't. J and I devoured House of The Dragon. We also found a really good Cyberpunk thing just started on Prime the other night: The Peripheral. Worth checking out.

So, on a positive note, I'll bid you goodnight.

Be nice to each other, read a good book. Remember the clocks go back tonight in the UK.

Ner-night.

(FACT: we only have GMT for 5 months of the year!)

 

Trying hard not to be a burden

Every Day is Nostalgia Day

My sister came up to visit briefly, in order to go to see Abba (second time for me). 

It's an extraordinary thing. Mainly middle-aged people; some older, some younger. Everyone in a party frame of mind. Many dressed up. 

The journey there was stressful only because of my condition. Once you get there it's a really lovely arena due to its pleasant staff and the calming environment of the foyer's wooden interior.

It's easy to dismiss, but this Abba show means something to people. It's the happy-sad Swedish nature of the songs - but also the time it was created. The 70s may have been bleak socially and economically, but it was very creative musically. And it was my childhood. There's a certain poignancy about the Abba songs that best reflects the time, in my opinion.

At the concert everyone stands up and dances. Especially the 'David Attenborough' guy (as my sister called him) in the row in front of us, though thankfully a few seats to our left. 

Luckily the people directly in front of us looked really square and lived up to expectations, not getting up from their seats until Dancing Queen, giving us a clear view.

So we're in the arena, sat down -I'm  feeling happy, nostalgic, sad. Such a mixture of emotions. FTD has given me a sense of melancholy - that I somehow long for my past, yet much of the past I remember is a past that admonishes me.  

I sit in cinemas watching Star Wars films with tears in my eyes throughout the whole movie, glad no one else can see me. Like a time-traveller, I switch back and forth from the present to the little boy in Swansea Odeon next to my big Dad, watching the whole film through a C-3PO mask.

I'm living my life in multiple time-lines. Everything has a resonance to a previous age - anything at any time can draw parallels with past experiences and I'm suddenly in a classroom getting told off and crying, or being a total shit to some poor girlfriend; it can be anything. The emotion generated is visceral. I cry out, swearing.

'Why are you here? Let's get back to the present.'

At last, that calm inner voice.

And I return to the present moment. Having done a Mindfulness course I'm 'mindful' enough to acknowledge my awareness in realising where I was in my mind and having the ability to return, and I give myself a pat on the back for doing so.

As an epilogue, my sister loved the Abba concert and I loved it just as much as when J and I saw it back in June.

Just as well as I'm going again in 2 weeks! 

"That's all I can see is green stuff!"

Those wonderful people at RDS have organised 6 Monday morning sessions at the London Wetlands Centre in Barnes. 

Yesterday was the second session.

Thankfully after the horrendous storms we had on Sunday, this was the breezy, bright Autumn day we needed.

We were encouraged to embrace nature. It was too far for me to go barefoot in the grass, and I've never been one to hug a tree. But I do find them enigmatic and mysterious. I've always been fascinated by what goes on under our feet, and it's only recently we're starting to discover the communication between trees and fungi.

Charlie and Raksha gave out notebooks and information leaflets. In order to give back I took lots of A-levellish photos with my iPhone. I have a ton of pro-photographic equipment which I have barely used for years as you end up being a photographer when you really should be experiencing being in the moment with nature. 

Twats.

Rather like the people who go to a concert and video the whole thing. They're missing out on the experience in order to get a third rate recording of it.

The title of this comes from a hide we were in. A dad was showing his little boy how to use the telescope to see the wildfowl. The boy was struggling and said "THAT'S ALL I CAN SEE IS GREEN STUFF!"

Made me laugh anyway.

Am I a burden?

J's having a hard time at the moment dealing with it all. Work, the future, the house, kids, the dogs, the past. I always think it's me and me alone that's the problem. I think of myself at times as the constant reminder to her that she made the wrong decision in marrying me. She asks all my friends and they say - no - he was always like this.

Thanks.

Really constructive!

Let me break this down. 

I have never been the easiest person. I am relatively thin-skinned, I am quick to anger, I am a total coward when it comes to confrontation...blah blah blah. Posts passim

However, in my 40s I had become a lot calmer. More thoughtful. Always trying to become better from my 30s, I'd read lots, been on courses, had therapy. None of us are the finished article. 

It is so hard. I have tried to get a thicker skin, be more calm, be less outspoken, think more about proffering my opinion etc.

When I met J I was in a good place: a more mature and less abrasive me. 

Then FTD. Oh the irony.

I became angrier again; with myself, with the world. Temper frayed, my intolerance worsened. My faux pas knew no limits.

I can hear my Mother's voice: 'Leopards don't change their spots!'

While an addict suppresses their addiction, the addiction is always there, and like a dormant volcano it can occasionally spring back into action.

I can't tell you how hard it is to keep it together all the time. If something angers me and it can be anything - the coping mechanisms I've created and deploy you would not believe. And it is really hard work, which adds to the tiredness people with dementia experience the whole time. Even a couple of days on holiday are tiring - and that's just talking to people you know.

So just remember that I am having to consciously deal with anything life throws at me now - when all of this used to be done unconsciously.

I am trying so hard not to lose who I am - to lose the best of me. 

I don't want things to be like this either.

Drakkenheim Continued

Sunday - a 4 1/2 hour DMing session. We had 2 special guest stars, Larry and Adrian from the other Drakkenheim group (from the games holiday) who met the Sunday players at The Bark and Buzzard Tavern in Emberwood.

From there they went to The Rat's Nest Tavern and and into the burrows, managing to defeat the hoards of Ratlings (2' tall bipedal sentient rats) and the Rat Prince and his Warlock. On the way back they chanced upon a wailing from a ruined house. It turned out to be a wretched ghost or in this context, a Warp Witch. On defeating the creature they heard a clapping behind them. 

This was a strike team of The Queen's Men - sent to duff them up and take their magic items away. 

However, by the skin of their teeth our heroes prevailed. It was a really exciting session in a really vivid setting of a shattered city, its characters and lore. 

I'm really looking forward to the next session.

My Monday session with a different group of players and the world setting is markedly different. Their characters are much higher level and are unfortunately going through giants like a dose of salts. D&D is very difficult to get the balance right at times.

And it's very tiring too, but worth it.

I can’t get my head to think

Games Holiday

 So I went on holiday, a gaming holiday. And the 2nd day I got Covid and had to come home and isolate. Very annoying. I'd hired a car too and had (naughtily) taken Wilbur the spaniel with me, despite the 'No Pets' instruction.

(Anarchy or what? Yeah, I know!)

I came home and all symptoms were gone in 2 days and after a clean LF test I came back. 

We played some games but not so much any RPGs, but for the last 2 days I Dungeon Mastered for 11 hours . It was so exhilarating but really tiring. The players all loved it too. Very kindly, the guys rearranged the timetable to accommodate me. How very kind and thoughtful of them.

Lots of other games were played: 6mm Napoleonic wargaming, card games, railway games (this is a genre) boardgames or other weird things. I even played one where you had to feed a Panda bamboo.

Napoleonic Wargaming using 6mm figures. Can you see them?

But my thing is Role-Playing Games and with a few exceptions they're pretty much all I really want to play. Those exceptions are Marvel United and Here's Negen and a few others.

By the way, this was the first time in 20 years a timetable had been used to organise the week. 

Some said it would never catch on. Others that it would upset the apple cart. 

It proved to be quite the game-changer (see what I did there?). 

At least when something is written down it can be changed/moved.  With RPGs once you start a campaign you need the same players as many sessions make up the whole game, rather like chapters to a novel. Some of the games can last years even played weekly with a 3-4 hour session.

In previous holidays games sessions were conducted on a far more ad hoc basis and there were hours spent waiting around for other players playing games we were told would last no longer than 80 minutes. 6 hours later and they were still playing.

Wilbur's Holiday

Wilbur loves it on the farm but he found the composting area in the private area at the back. I ran through to the private area of the owners, through the huge hissing geese and posh chickens and despite calling his name several times I ended up having to drag him out of the compost by the scruff of his neck, still with a rotten fermenting apple in his gob.

He woke me up at 3am to puke it all up. Thanks Wilbur.

Farmer Wilbur 

I tried taking him for a walk, but 200 yards in he just dug his paws in and headed back for the farm. He just loves tootling around there and there alone. 

Luckily the other gamers (for the best part) like Wilbur too. He takes a seat next to me so he's on the same level when I'm DMing.

He's one of us.

Everyone you know is mental

Gamers are mental. This was the fourth time I've holidayed with them so I should know. 

I am now an EXPERT.

And it's all of them. People who don't wash, or do wash but not their clothes. People who have a room in their house full of Amazonian tree frogs. People who have made 6 attempts to leave the house because of their fear of getting Covid. People who are rules lawyers with no self awareness whatsoever regarding how they impact on others, who deny the existence of rules they aren't aware of. People who have the loudest voices you've ever heard. People who look at you in utter horror if you use a metaphor or analogy because they are so literal and cannot make that leap. People who can't bear any material on their feet. People who cannot bear any material on their arms. People who cannot do anything for themselves as their wives/mums do it all at home. 

Of course, I'm only scratching the surface here. But you get the gist.

Gamers are also kind, gentle, inclusive, accommodating, interesting and thoughtful.

And this is why a demented - such as myself - fits in with it all.

Life back on Earth

I had a stress-free time at the gaming holiday. It was hugely enjoyable and relaxing (except when Wilbur runs off to eat compost). 

Dungeon Mastering  for that amount of hours and the intensity of it also turbo charged me into a good place, but now I'm back I have all manner of crazy negative thoughts coming into my brainage, none of which were present on the holiday. A lot of these are the same old stupid things that have been haunting/possessing my conscious these last few years, all of which happened years ago.

Possible reasons as follows:

1. The Conservative Party. They certainly don't help matters.
2. Pelotons of city-boy cyclists on 15 grand bikes shouting about their what their broker's advised them while tearing round Richmond Park don't do my mental health any favours.
3. Knowing that I'm on a high as far as cognitive function goes means I can expect a trough in the very near future.
4. We all feed off of others' fears and worries unconsciously, whether from hormones, smells etc or body language and the subtleties of communications.
5. Other/don't know.

As always, I tell myself to remain creative and keep busy and all will be well. I still haven't drunk since that Friday in September when I lost my shit.

Luckily I found it again. 

It's just retaining my shit that's the problem.

Quaint little hellhole

 Vanless, clueless

Having sold the van I’m now consigned to public transport. I came down on the train for the first time in years. I’d thought Castle Cary was much further away  - the same distance Bath is - but it’s only 10 miles. Dad was there to pick me up - just like when I was in my early 20s! It was a really nice journey on a new train. My noise-cancelling headphones and a half-full carriage added to the quality of the journey.

Dad chose a really dumb way to go back. I wanted to go back through the pretty villages of Croscombe and Dulcote for old times’ sake. I used to cycle to see friends who lived there. Bike lights back then had about as much illumination as a cigarette. I never got run over, but I did end up in ditches a couple of times. 

Instead we went back through country A-roads with high hedges and littered for miles. With the detritus poured out of vehicles by scum. 

Long-haired hippy bastard!!

What can I tell you about this place? Well it’s changed and I’ve changed. We’ve changed. More populous, more affluent and at the same time more down and outs. Visible heroin problem and lots of mental heath issues. The 2 are not necessarily mutually exclusive of course.

I realise this is par for the course for almost every developed country in the Western World, but hey.

I know very few people here now. It always amazed me who came back, not who stayed. When I left and being a creature of habit, I never wanted to leave, yet I ended up in London, dirt-poor, looking for work. But it was so exciting and vibrant. To a young person it was great. No one calling me out for looking different, no one trying to ruin mine and my friends’ evening because it was their way of feeling better about themselves. In fact, lots of people like me, relishing their new found anonymity and that no one else gave much of a fuck either. No one was going to try and ruin your day. There were lots of people much more edgy than me so I really truly was a minnow in an ocean. Bliss.

Freedom in other words; a chance to reinvent oneself. I shone brightly for a few years, thankfully realising there was no place for me in the world of advertising - despite having won an award as a student - and then after an epiphany and retraining to be a stonemason, I found that the umbilical cord I thought had long-gone snapped me back home like a bungee and I got a job in a local stonemasonry banker shop - the only positive reply I received from a dozen letters, and so I returned, churning out stones in factory conditions at £4.15 per hour in 1996. A 39 hour week meant I would have a net pay of £130 if memory serves. And the place was like Lord of the Flies with the chosen alphas at the top who would give beatings out to the apprentices, but had their favourite - a surly little bastard just like them. They’d call it toxically male these days. 

I spent a year there an then went to a much nicer place in Shepton Mallet which produced a far better quality of work.

But I digress. It’s strange moving back to a small place when all your peers have left as well. It’s like the heart and soul of Eden has just disapperaed making it feel like a semblance of itself. There are people who never left who can be quite resentful that you were ‘disloyal’ as they see it. I find the patheticness of that really funny.

It’s also funny - to me at least - that the biggest rebel I know returned there. I know she’s told me why but I can’t remember and I think the reason that I can’t is that I could never truly get my head round why.

Brain not compute…brain not compute…

So after 2 1/2 years I packed everything in and moved back to London, but that’s another story.

Modern life IS rubbish (but it has its compensations)

I’m at the cafeteria of The Bishop’s Palace having a vegan sandwich. I’m not a vegan but I’ve developed an intolerance to lactose. It’s an age thing, you see.

Middle-classed hippies with their home-schooled boundary-free kids running and screaming at the other end of the restaurant. I’m here at the furthest end from them, safe with my coffee and cake with my noise-cancelling headphones.

What would I do without you…?

I recommend these to everyone who has dementia or any sensitivity to noise. Other people’s dogs, children, mobile phone conversations, loud revolting students (a tautology, I realise) and just general pub/restaurant/classroom etc noise. Makes life more tolerable. Not a cure, but a treatment.

You probably need a product demonstration. In fact, you definitely do if you haven’t put a pair on. Unless you’re already hard of hearing which I would say is a far better place than being hypersensitive to noise.

I should have been in advertising. 

Actually, no.

Even the people I know who went into it regret it.

Stonemasonry was the least worst way of earning a living I ever found. I tried a lot of different things see. I would have much preferred to be a trustafarian just doing course after course. Loved learning new things.

Maybe in the next life.

Don't read this if you're having a bad week.

I'm so happy you could puke.

I've heard it said that creativity sometimes flourishes when times are bad. For example the punk movement burst onto a complacent youth/music scene when Britain's economy was in the 💩 and everyone was fed up. 

Ditto this blog. I write usually when something or someone's pissed me off (which actually may be most of the time) but actually I've just had a great week. It's been fantastic actually.

(I'm ignoring our new plutocratic scum elected by 0.3% of the population by the way.)

So I'm going to buck the trend and try and write something positive about my wonderful week.

I'm now going to tell you about it. The disclaimer is if you're having a bad week then I apologise in advance and recommend you DON'T read this, okay?

Last Wednesday I met up with some interested parties in London (it's very exciting commuting into London when you live outside it) to discuss being a part of team who will deliver talks and articles about rare dementias. It's at a fledgling state at present as we thrashed out what we would and wouldn't say, and I spent the whole day (10-4pm) in Queen's Square and whilst it was tiring  - I was doing jaw-dislocating yawns by the end - I felt so empowered. I can still produce good ideas, I can metaphor and analogise with the best of them, and I think my brief experience in the world of advertising has given me the tools to know the message the recipient should be taking away at the end. 

I made a valuable contribution and that really made me feel good.

I was so tired that the next day that it was a total write-off!

80th birthday party

On Saturday evening J and I went into town to a joint 40th birthday between a husband and wife  - hence the 80th. 

To be honest I wasn't looking forward to it. Rather, I was nervous. There were certain people there I wasn't looking forward to seeing particularly.

When I arrived the welcome was very warm. Over the evening I didn't speak to everybody but that was fine. Some of the people there I wasn't close to, but one person I'd fallen out with (she'd rather fallen out with me) was friendly and we chewed the cud over the weather I think. 

Another old friend took me outside and I thought I was going to get a talking to about something or other, but I couldn't think what he was going to say. He asked me to explain my FTD so he could understand it and he asked loads of questions about me and it and Jacqui and my family and how they'd been affected and then seemed genuinely sorry that he and I had become disacquainted and he wanted to make an effort. 

How nice is that?

Our history is long (I've known him for 16 years) and complicated. It was a real olive branch though and it was a very genuine and bold thing for him to do. I really appreciate it, Andy.

Most people I hadn't seen for a while - years in some cases. It was very loud and almost impossible to hear anything once the DJ started up, so many of us non-smokers went outside into the cold.

One woman I knew vaguely and to be honest we'd never particularly got on very well, came up and hugged me. She said:

"You probably don't remember me but I used to hang out at the house in Abbeville Road when you lived there." 

I thought, what's she on about? 

"I know who you are - you're Laura." 

She went on about something else  - it was fine, nice even. It was only later I realised that someone must have mentioned dementia and she thought 'Alzheimers!' That's why she assumed I would have forgotten her.

Fact: 37% of dementia is NOT Alzheimers.

At 10.30pm I'd had enough - too much noise and socialising is very tiring for me now, so J and I got a taxi to Waterloo and went home. 

Such a pleasant evening - they're often the ones you have low expectations of, so you can be pleasantly surprised,

Drakkenheim lives!

The following day I did a 5 hour Dungeon Mastering session. I had prepped for the players with the expectation they would be finishing off a dungeon they'd left last session. Of course, this being a sandbox D&D adventure (i.e. non-linear: here's a map - go where you want, do what you want) they didn't do what I expected at all. They went to another bit of the map instead! 

To describe the scenario, it's rather like John Carpenter's The Thing crossed with Game of Thrones. Not for the faint-hearted!

I say! What fun!

I started off tired from the previous evening but after a while got it together. They did really well, and I brought in rival factions to the adventure to disrupt/help/hinder the party. This made running the adventure quite a lot more complicated as yours truly had to play all the Non-Player Characters who populate the gaming world.

I made the knight clumsy and incompetent yet zealous for the cause. He ended up getting eaten by a living wall in the end (as you do), having accidentally killed one of his own men.

One player, Chris had to make 2 exceptional rolls in order to avoid confrontation with 9 bandits. He rolled 20 and 20 (on a 20-sided dice), the chances of which are er...

Anyway, the players did an excellent job. They are really thinking about the game and how to overcome situations where they may be overpowered and they seem to be enjoying it. 

By the way, if you've got this far rest assured things can only go downhill in terms of enjoyability for me. Hold that thought!

Behavioural it is then.

 Angry lever jammed in the ON Position

Friday afternoon - I met the goblins at The Antelope (seriously) and there happened to be a beer festival. Amazing beers - New England Pales, IPAs and unfiltered pales. Gorgeous. I didn't realise how drunk I was.

I came back in good spirits and was sat in a room with X. What set me in a rage is immaterial. But rage it was.

Since then I have been very quiet and have made the decision not to drink except with a meal. I have been looking back at this moment in time and since then I have been feeling as though a change has occurred.

 A change within me. I could go more easily at any time. This is not a good place to be. It's like I'm shaking inside.

To placate it I listen to calming music and read. I watched The Rings of Power last night. Despite the basement dwellers' condemnation of it, I found it a great tonic.

It would seem the overriding form of dementia I have at  present is FTD Behavioural Variant, or Pick's Disease. The Frontal Lobe is degrading, which is a shame in the main as it's responsible for behaviour. So, more irrational shouting out, rudeness and anger.

This is a genuine trough in the overall dementia wavelength. I'm also a little bit more discombobulated when it comes to being put on the spot with conversation, being questioned and so forth. 

My conversational topics are becoming very limited as well. This must be very tedious for everyone else!

One of those clients

A man phoned me today as my masonry website is still online. He started almost telling me what I was going to do in the job as I would be working with another bloke I don't know. I took an instant dislike to this guy. You don't phone up a specialist and tell him how to do his job. He was pretty condescending in his manner too.

The conversation was very stilted and the temptation to tell him to fuck off was palpable.

I didn't though. 

Don't worry! If he calls again I will.

Bye Bye Van

There are certain things in life - key moments. This was one of them. Over the last couple of weeks 2 friends have come over to buy tools and equipment from me I will never use again. (Saying that, I kept other equipment I will probably never use again, but hey...).

But it was the van being sold and driven out of the driveway that has really resonated. We've been through a lot - we had a symbiotic relationship. I couldn't have done so many things without it. And then with all my decals still on, it goes from my life. And that was the end of that.

That's pretty significant I'd say.

It's funny how we anthropomorphise inanimate objects, machines etc. We love our pets and grieve for them like a family member when they pass. 

Although I haven't wept, there's definitely a part that's gone from my life. It wasn't just the van - it's what it signified: my working life; my contribution to the family; my living; the one job I hated less than the others.

It's made me feel confined. I want to go out less and less and only to places I'm familiar with, unless I REALLY want to see someone or something.

That chapter is now well and truly over. Suddenly my arrogant distain for the RDS monthly group has gone - I need it now. I belong there. These are my people. I've seen people degenerate in only the 2 years I've been a member. I thought I was almost immune to it. Like Chris or Alison my dementia would remain constant for 8-10 years. 

Nah.

Next Chapter

Well, I'm enjoying cuddling up with the dogs on the sofa and taking them for walks, although Stanley is extremely naughty at the moment. His mother won't hear anything of it though.

Evil Incarnate

I'm enjoying reading and preparing and running Dungeons and Dragons games. 

I need something physical to do as well. I'm atrophying quite quickly, plus the exercise is v good for the brain.

I'm going to Barnes Wetland Centre for 6 mornings starting in October in conjunction with RDS (Rare Dementia Support) as I love birds and nature so I am really looking forward to that.

I've got the games holiday in early October for a week.

I'm going to see my family in Somerset late September, and see my friend Mark.

Still got the gaming, Sundays, Mondays and Tuesdays.

That's pretty good. Better than nothing. Helps to write these things down so you can see them.

 I feel better now. Thanks for reading 🤓

The Truth about my dementia

 The Grim Bit

What to write anymore?

I could go on about the minutiae of my life in that droll way I do which everyone is very complimentary about. But I think it's getting boring. 

I suspect it's lost its way a bit.

So what can I tell you? I don't want to sound self-pitying. It's a danger area I try to steer clear of. It never helps anyone.

I'm going to try to cut through the chummy guff and tell you what I can. 

There are 2 people immediately involved with this dementia issue: J and me.

Our relationship has been more companionship than anything for the majority of our marriage. There was a period I wasn't aware of when J couldn't bear to be with me due to how I'd changed.

We had relationship counselling 2 years ago. It was always going to be the sticking plaster over the rift.

It was horribly upsetting. For me, I felt such a failure. I still couldn't understand why things had just gone; just petered out.

We then got my FTD diagnosis.

The more we learned about the condition, the more it explained why I didn't get where J was coming from most of the time, my lack of empathy, why I was behaving like I do, and the symptoms I was directly conscious of, like tiredness, irritability, oversensitivity to light and noise, my unwillingness to do shared activities or go anywhere, losing words, substituting words, the ever increasing brain fog, my temper and even more faux pas than ever before.

We probably use FTD as the whipping post more than it deserves, nevertheless...

...here we are J and I, in the present. Her working upstairs and me downstairs typing this. 

I try not to think of the future as it means further degradation of my brain and behaviour. Nothing I nor anyone else can do about it.

I've always been nostalgic for romanticised visions of my past and at the same time haunted by those myriad times where I let myself down, which I'm reminded of every morning as I wake up.

J is very future-focused (management -speak) and we are finding it very difficult.

What is our relationship, what will future relationships look like, how rapid will my deterioration be?

It's very difficult planning if you don't have even a rough idea of timings; key-moments.

I don't know where any of 'this' is heading. 

But this is where we're at.

Mitigating the Inevitable

Okay, let's try and be positive here. I am trying to keep my brain fit and functioning. This is how.

I'm playing with the dogs every day - Stanley and I play a game with these balls which bounce irregularly. I throw them off the wall and he goes crazy trying to catch them. I think it's his new favourite game. He's not interested in the other balls that have a regular surface and bounce predictably. We do this for half an hour at a time. 

Aren't dogs brilliant?

I love the dogs. Chippy is a bossy dachshund who is deeply suspicious of strangers, and Wilbur is a dopey Spaniel who is the greediest dog in the world, but he's lovely.

I've also started juggling again, to try and keep my coordination from going. Years ago in the 90s there was a juggling craze. While juggling 3 balls is muscle memory you do get out of practice and I used to be able to do tricks. I'm trying to do 4 ball juggling again as I used to really like that. I'm getting there...

I read lots of news  - The Times everyday, parts of The Guardian, BBC website for news as it happens, and also other magazines and feeds. Looking forward to today's news to see who our latest totes-inappropes PM will be.

I also run D&D games as no doubt you know. This involves assimilating huge amounts of information, storylines, and roll-playing numerous characters while riffing with the players. All the while trying to keep the flow of the story and plot(s). It can be exhausting.

I DM'd a new campaign yesterday - very different in its setting (think Game of Thrones meets John Carpenter's 'The Thing') which I think went pretty well.

I write a journal every night. It's complete salacious garbage but it's my complete salacious garbage.  

It's cathartic, if nothing else.

So I am trying to keep going - keep ticking over - while the temptation is to sit on my backside watching the same old stuff on YouTube!

All things considered I'm doing okay.

I'm okay.

SHUT UP GERAINT

Nothing to say

I feel I have less to say these days. And that's not like me at all.

I read the newspapers and walk the dogs and play my games, do my chores. I just don't seem to generate the same yield of rants and opinions that I did even a year and a half ago.

This must be part and parcel of the general decline in my brain activity. 

I've had the intention of reading lots of Dungeons and Dragons books and have achieved very little - a chapter a day at best. Disappointing.

I still have my lists. My reminders on my calendar that pop up to put me back on the tracks.

God it's easy to ignore those. 

In fact I laugh in the face of digital pop-up reminders! 

I chat over the news with J, but less so I think these days. It may be that with the 5th rate venal scum we have running the country that it's just too depressing to talk about any more.

D&G Decline?

We keep on cancelling the Monday evening sessions. Sometimes people just don't respond on the WhatsApp messages if they're able to attend or not. It may just be my perception of things but I feel there's a decline in the energy - the positivity - that used to drive the games.

It may be the particular adventure we're doing is less interesting, my DMing (Dungeon Mastering) or just that people are tired after work, the campaign has just atrophied, or something else. 

Maybe it's just my perception.

Perceptions are everything though. 

I get concerned as I drift off into the Astral plane of dementia, that the silvery cords that bind me to you, the world and everyone and everything are disintegrating atom by atom, molecule by molecule.

They are here...

(This is a big D&D reference from the Astral Projection spell!)

Already I feel more distant than I did when I started this blog 9 months ago. 

Increasingly separated from everything until there is nothing.

Oh well, look on the bright side.

😶‍🌫️

Finally Retiring

I've sold my van, which is being picked up next week, and 2 of my masonry chums are coming to buy my old tools, though I am  keeping my hand tools for futile purposes.

2 other friends have asked me to carve a green man for each of them. I'm happy to do this. Whether I get round to doing it is another thing, but as usual I INTEND to do it. It's a great get-out clause I learned from an old (non-masonry) boss years ago. We INTEND to be there. We INTEND to win. I INTEND to knock smack on the head, etc etc..

I'm not really on smack by the way.

Finally I'm doing something meaningful and getting shit done.

A new world beckons. I shall visit my friends, sort out the house, sell things on Ebay, run myriad games groups.

Well, I intend to of course...

My Brain has Stalled...

Have you seen my sausage?

 I talk a good game at times. Like a lot of people I have great advice for everyone on how to live. 

Today I am on the struggle bus, as J calls it. 

We walk 3 dogs every morning. Today X's Dachshund ran off in the woods. For 40 minutes we were in stress-city calling him, chasing him, calling him again. Hearing him bark in the distance. 

The other 2 dogs  - Wilbur especially - were getting stressed by it all. Why weren't we moving? Canine panic!

For us humans it was worse on J than it was for me. The very thought of losing another person's dog is so horribly stressful.

Eventually we got him. He had crossed the road a few times (not good) and I managed to lure him from 20 feet. He'd obviously scared himself witless and it was a huge relief to all. 

When we got home J had to jump straight into work. 

That's not the best way to start the week of course.

I can hear J upstairs. Sounds like she's up against it at work but I may be wrong. 

Me, I just can't get going, which is why I'm writing this.

I had a list of things to do - admin things relating to closing down my business. They'll wait till tomorrow.

I have some other things to do - physical stuff like putting some weeds and plants through the garden mincer and cutting a tile for a neighbour's DIY project. I can do those and at least they will be the boxes that I tick today,

Let's not set our sights too high today: listen to my body; listen to my brain.

I ❤️ Unimogs

Like a lot of men my age I'm notoriously difficult (in general too it must be said) but specifically in this instance with regards to buying presents for. 

So for Xmas my family had taken note of me extoling the many virtues of Unimogs - 4 wheel drive utility lorries made by a division of Mercedes - so they got me a driving experience with one!

Now me being me I left the gift card on the bookcase and did little about it as with FTD your executive functions become increasingly inert. After all, it's much safer here in front of the computer surrounded with D&D books.

Cue stepson Ben who prompted me to act, and we booked the session in for Saturday 20th August. We drove there - 5 of us - (leaving the dogs to be capably looked after by a neighbour's son) and had a very pleasant afternoon at https://tanksntrucks.com in the heart of Kent.

I'd never done off-roading before but it was really fun. Unimogs are quite different to regular vehicles. The 1984 model I drove had 10 gears and lever to make it go forward or reverse, so it was possible (if you were mad) to drive it at 70MPH in reverse. 

It's a very mechanical vehicle and and a very enjoyable experience pootling along. 

I would thoroughly recommend it. 

By the way, I was knackered in the evening, falling asleep on the sofa. J pointed out that it was not the 45 mins of driving the Unimog, but the socialising I had done that day that had done for me. 

And she was spot on.

Dream car...

What is there left to do?

• Sell van
• Liquidate (or whatever term they use) company
• Transfer stuff over to me after taxes etc
• Sort out the garden
• Decorate J's bedroom
• Decorate Ben's old bedroom
• Other stuff.

That is a lot of stuff. Easy to become quickly overwhelmed. I must break it down into smaller pieces or I'll be having sleepless nights. 

There's always so much to do isn't there?

Dementia Boiling over

 I'll fight you for a beer

Having FTD BV/SV isn't great. Well, it's shit actually. I get by. I'm keeping busy and active and that's pretty good for me. 

I did a load of gardening last week, filled the skip, ordered things for the house. God - I'd let everything slip for months and months and now there's mountain to climb, but I'm breaking it down into doable chunks. It's good for me to keep active - have lists of achievable tasks for each day and it's good for my mental well-being.

But however much I do, I still have dementia. And it comes to the surface when you are least expecting it.

On Saturday I was at a friend's house. It was a birthday party. We were all sat outside with the blistering heat and the 11 year old daughter of our host was fetching us drinks the whole time.

A new couple joined us, sat at the other end of the table. He had one of those voices that just carried above all others. A sort of unfortunate nasal South eastern accent. He and a woman were talking politics. 

He said a couple of things that jarred with me. "Margaret Thatcher. She had a job to do." It was all sounding rather Daily Mail to me. I had to leave the table.

After a relatively short time everyone apart from him and the woman were indoors. Later, after even more beer in the heat, he was talking to J. She flailed her arms around, gesticulating. 

I couldn't hear what was being said, but neither could I help it anymore. I stormed up to him to berate him of his Daily Mail bollocks and the fact everyone came indoors leaving him outside as that's all they could hear was his voice talking shite.

I was quickly ushered away by everyone.

I'm afraid this is probably the future. I'll expect to be hit a few times in the short and long term. And at the age of 53 never having had a fight in my life, it's probably not the best tactic.

But at the time I was unrepentant and angry at this guy's views.

And another thing...

I woke up sweating with alcohol in the early hours and made my way down to the hammock beside the pool (!) and expected J and everyone else to be furious with me. 

When J found me she was really sweet. I wasn't expecting that reaction. Oddly no one seemed to mind. Maybe I'd said what they were thinking. Or maybe the waters had been calmed with everyone being told I had this weird dementia.

I was too embarrassed to ask. It was S's (our host's) belated birthday party and I'd presumably upset the evening, or had I provided the entertainment? 

We had breakfast and drove home.

We have another 'do' in the near future where I know there are 2 people who drive me nuts with their pro-Putin right wing views. I think avoidance of them and alcohol will be the order of the day.

Improvisational Skills

I DM'd some downtime for the players in last night's session with my Monday crew. You may know we have a WhatsApp group called D&G which was set up before I joined. I asked after a month or 2: 

- Why is the group called D&G?

- Dungeons and Dragons!

- No that's 'D&D' not 'D&G'.

- Oh.

They're all dyslexic, see. No one had noticed.

Anyway, the players finished one part of the adventure. It's kind of done in chapters - modules in old 1st Edition - which they have to complete, and then they have downtime - like a rest back in the town where they live, with minor events thrown in for good measure. 

They had rescued a dwarf called Morley from a hermitage on an island that was under attack from some aquatic zombies. They later revealed to the dwarf that there was a price on his head. Morley, suddenly terrified, pleaded with them and told them he'd been set up.

From here on in I basically improvised a story with counter claims and subterfuge with a powerful local merchant who is very popular with the townsfolk, despite being an utter crook. None of this will play to any single group's  benefit. Any outcome will be a Pyrrhic victory at best. 

Just like real life really.

The session went really well and served to enrich the environment with role-play and (almost) zero combat. 

I really enjoyed doing it and it gave me a lot of confidence and contentment with my neurological faculties, in stark contrast to Saturday night's frolics.

 

 

The Sedentary Life Calls

Busy as a bee

I don't know what the hell has happened with the formatting here. I fxxxing hate centred or justified type. And yes I have been trying to get the formatting back to ranged left.

I've been really busy recently. Following on from the 6 days of work (I worked Monday too putting a sundial pedestal back for a Royal personage in Richmond Park) and so I thought I would continue with the momentum and do lots of work around the house - work I've neglected for months. J is simply too busy with her job to do stuff, so it's only fair I do the janitoring.

And then today…walking the dogs with J. She lets Chippy off who’s going ballistic and he shoots

off. We then saw that he’s not running after squirrels but some deer - he’s a dachshund too, which is comical yet still unacceptable.. Panic takes us. 

I’m wearing sunglasses at 7 in the morning in the expectation that within half an hour I’m really going to need them. I start running not looking at the uneven ground and turn my ankle. 

Cue Malcolm Tucker impression.

Oh blast...

So this throws a spanner in the works. I’ve turned ankles and sprained wrists all my life so I know how to deal with them (foot up, ice pack on and off in 20 minute bursts).

Back to the walk and we searched for Chippy for 15 minutes or so. We returned to the spot where he'd disappeared and there he was, coming from the other direction, with a euphoric, deranged face on.

But I’m a bear with a sore head. Don’t come near me.

I will bite. Or throw something. Or worse. 

Oh, if I had napalm right now...

Thing is while I still had the bit between my teeth I was going to start decorating a bedroom next week. Hopefully with a rest I can still do that. 

If not I'll read that ever increasing mountain of D&D books.

Bring on Autumn. The coolness, the water, the colours, the perfumes, the relief from this un-British heat and drought.

So next week we are thankfully forecast lower temperatures and rain. I read today our wonderful privatised water utilities haemorrhage billions of gallons; Thames Water alone 600 million gallons of water A DAY. We have the only privatised water companies in the world, and when they’re not pumping thousands of tons of raw sewage into our lovely rivers they’re awarding themselves and their shareholders millions of pounds in dividends. 

Makes ya proud, don’t it?

Think of the animals

Awful pictures of wildlife that have been killed by dehydration. I’ve got an insect water feeder coming today.

I get very depressed and sad about animals. We treat them so awfully. I still eat meat but I’m veering towards vegetarianism. With the passing days I like to think I would miss meat less and less.

I suspect this is to do with FTD - even though my empathy to humans is diminished I have heightened emotions. Especially towards maltreatment of children and animals.

Current Music and Media Tastes

I’m very much in a practical mode at the moment. I’m really not interested in reading D&D books (despite having bought yet another adventure book…).

What I’m currently into:

George Duke - Fusion

Banda Black Rio - 70s Brazilian funk

YouTube - barely watch it. Ditto Abba.

Samba makes me really happy - keeps my spirits up. It just has that vibrancy and vivacity that is absent from say, this.

Especially when George Duke plays it on Brazilian Love Affair. Don’t like the sloppy R&B stuff, but I do love the fusion!

It’s too much noodling for most. I love to be bombarded with it. I can’t get bored with it. 

As you were.

I don't do meetings, I just do doing.

Culture of Guff

Having not been in the culture of corporations or medium to large companies for several years, I'd rather forgotten meetings. 

There's a certain type of people who relish meetings. "Goody! We're going to have a meeting!" they cry.

They've been practising their delivery, their jokes (the obvious ones the rest of us think of but can't be bothered to say) which they laugh at themselves, and will drone on and on about the one thing they're interested in that's of little or no interest to the rest of us. 

In my judgmental way, I imagine such people are often pretty ineffective in the workplace, but I digress...

To the rest of us, meetings are an intrusion to an already hectic workload. At best, a necessary evil where 5-10% of the content actually applies to you. 

As you can guess, I was in a meeting the other day. I can't divulge the contents, suffice to say I was no clearer at the end than I was at the beginning.

I used to think a meeting was a sorting office, to provide clarity and strategy in order to efficiently achieve a shared goal.

What an idiot I was!

Now this may just be me being demented, or it may be that in my 20 years absence from the world of meetings, their very nature has changed to become more nuanced and holistic. Perhaps I'm not aware of the subtleties of New Meetings and this is how I fail to grasp the information subtly contained within.

It must be me, as at the end of the meeting almost everyone looked really pleased. However, we did not put a proposition down as to what we wanted to achieve, who we needed to speak to and how we were to communicate it. 

I had mistakenly thought this was the whole point.

When Martin Duncan-Jones - a very clever friend of mine - was at university he was told to not write  essays starting with an assertion, which is then backed up with facts, ending with a conclusion, but to talk about things in a 'perhaps this could be said...perhaps that could be said..." type of way. 

He produced a meandering essay he knew was absolute drivel, and they were so impressed they ended up using it as a teaching-aid.

He realised then the world had gone mad.

Hello world.

The Burden of Dementia

As a person with dementia I'm always trying to delve deep within myself to ascertain what is guiding me at any one moment. Why did I do that, why did I say that to that person, in that way, what makes me happy, what could I do now this minute, what I didn't I like about this or that.

It's all about me, with the odd realisation that I could make the others working upstairs a cup of tea or vacuum the house. 

If something's out of place or someone's left something somewhere it shouldn't be I can get really arsey about it. An obsession with order is very much an FTD trait.

As is lack of empathy.

I don't consider those closest to me a lot of the time  - the space and time they're giving me. Their patience at dealing with me while they deal with their own lives: the cost of living crisis, their own careers, their own money worries, worries about other family members and on it goes.

And for much of the time I'm quite oblivious to their needs. I've become a teenaged me who is happiest gaming or listening to music, with friends. 

I should start going swimming again.

See? No worries at all.

Then it dawns on me and I remember to consider others and that if they left something where it shouldn't be they were busy or tired and it probably doesn't bother them and after all it's not a big deal. 

But that mindset is difficult to sustain.

Dementia is a burden to everyone nearest you.

The last Bay

Back to tangibles...

Worked with Fyfe this week in Teddington. This is my penultimate job. Very simple - to take out a PVC double-glazed window and the bricks and lintel above the window and install brand new hand-carved Bath Stone features to an early 20th century semi-detached house.

Before and After...but can you tell which is which?

The PVC window was held in with just 4 galvanised screws and some mastic but it had been there 20 years or so. The lintel was odd but again like the terrible brickwork, was poorly constructed using pea shingle as aggregate so it was light enough for us to take it out quite easily.

We worked hard and effectively that week. Oddly enough my muscle memory was intact and lifting, sawing and everything else was fine. I guess walking the dogs had prevented me from atrophying too much.

The client was really happy and paid us on the day. It was a job he'd been wanting to do for a few years so it was a great relief for him to finally have it done. Lovely people - I've been lucky for the best part with clients. Only had a couple of cu....nutters.

As these things do, a sleepless Sunday/Monday night and the adrenalin keeps me going, then I crashed at the weekend. Fizzled out.

However, I hope to keep myself going  - this has galvanised me and like Baron Munchausen  I have shaken the dust and cobwebs off and am now striding around the world like a mighty Apollo...

I shall seize the moment with this new found energy and next week: garden-weeding and bramble-destruction! 

I shall use a variety of sharp objects and powered implements. 

Death to invasive flora!!!

Yes, gardening. At least I can do stuff around the house and garden. Being busy is difficult to maintain, but I should be doing odd jobs far more.

Let's see if I can keep the momentum going...