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.