Holidays in Dementialand

Pubs

I was doing really well. We’d had a funeral, 2 big walks, meals out. I had coped with all the new people, the crowds (the hustle, bustle, noises and so forth) and then after a not very good meal we decided to go to the pub nearest to the restaurant - the best pub in town too.

Suddenly lots of people. I thought it would be relatively quiet on a Tuesday. The people we were with knew a couple at the bar - they went back years. Hugs, bon homie, chitter-chatter, old friends and everything that entails.

Something in me switched. I can’t grasp what exactly but I went very silent, looking everywhere else but the conversation. I went outside for 5 minutes but that didn’t do anything except leave me feeling colder. 

I guess I was hoping the four of us from the restaurant would be on our own having a quiet chat. I just wasn’t expecting there to be new people joining us. I don’t know why this is so difficult. It seems I slip a gear when this happens and can’t get going again. 

I guess I don’t cope well with the unexpected anymore

So I stayed there, in that space.

The old me would have tried to join in the conversation but like a roundabout going too fast I just couldn’t get the timing right to grab a hold and be part of it all. Nor, if I’m honest, did I have the inclination to even want to try.

The people at the bar were friendly enough. It’s just the dementia.

I think our friends felt awkward with my behaviour and I’m sorry about that. It’s not something I can do much about anymore, and some episodes are worse than others.

Oh god, it’s him…

Shopping

I woke up this morning and J and I decided to do some shopping. The feeling from last night was still there, as I entered shops with music playing and people milling about; lots of voices. I was finding the whole thing just slightly overwhelming. 

I put on my Sunflower lanyard.

(I’m never sure if people know what it means.)

Anyway, I tried on some approach shoes and while they fitted my weird feet, I didn’t like the styles. I don’t know about you (and why would I?) but some seasons I buy nothing as I find the styles and colours pretty ghastly. 

I had neglected to pack enough hiking t-shirts due to dimness/dementia, so I did buy 2 hiking t-shirts (cotton T’s can get uncomfortable on a long hike) with Jacqui’s help. I then said that we should abort the shopping sortie as it was just a fruitless exercise.

I’m now writing this. This evening we are going out once more to a restaurant. It will be fine. This sort of thing just happens now and again.

I’m just looking forward for it to pass over so I can return to the new normal. 

It can take days however.

My Neurological Diversity, innit?

Someone I was at school with sent me a friend invite after viewing my profile on Facebook. We didn’t really know each other very well, but she had read my blog and a lot of it had resonated with her. Amongst other things she had been diagnosed with autism. She said if she had not known she would have thought I was writing about autism - especially the need to wear dark glasses and noise-cancelling headphones bit.

We compared notes and have had similar experiences socially all our lives; not really fitting in to any one group, saying the wrong thing/ faux pas, and more. 

Yes, I know everyone does. 

But they really don’t.

It was very interesting anyway, and good to have a new friend to understand/empathise with.

I need to talk about stationery

My lovely stationery

Above is a selection ladies and gentlemen, of my lovely stationery. By sharing this you will now think I am really cool and want to be my friend etc. I need ALL of these pencils and the Post-its but especially the tabs. I love tabs. (As you can see.)

They have to be actual Post-it notes and not imposters as the others never stick or stay put long enough. I despair of stationery suppliers who try to fob me off with 3rd party sticky notes. I mean, what are they trying to pull here? Do they take me for a fool?

The highlighters at the bottom of the shot are Japanese. I took a while to find these. They're not quite the colours I would have chosen but what's great about them is they have a really weird window in the nib so I guess you can see the characters as you highlight so you can highlight individual Japanese characters. Makes sense.

Propus highlighter nib

I use pencils and fountain pens to write with. I am known for my handwriting. I use a Rotring Art Pen 1.1 and a Cross fountain pen for my diary. The Cross has the best flow of a fountain pen I've ever used. Not too much and not too dry - just right. I prefer Waterman ink to Parker Quink. The latter is acknowledged as the best but that's my personal preference.

By the way, I really really hate it when people borrow a rubber at gaming sessions and don't give it back IMMEDIATELY. This is very egregious behaviour and is very difficult to tolerate. They should work on this.

Talking of gaming, most players are pretty OCD (can you imagine!) and like to keep their books pristine. I used to be like that, but I grew out of it and these days - with my brain being what it is - I have to do a lot of background work before a game session.

It's very difficult to retain new information, and there can be a lot of it. For the game to flow I need to cram as much information as I can. The only way I can do this is to precis the whole book along with highlighting and tabbing the information within.

It takes about maybe 12 hours to prep around 20-30 pages.

WARNING! This following image would be considered desecration to a lot of gamers:

Covered in tabs, Post-its and highlighter

An A5 notebook with my summation of the text

I also buy a third party set of notes on the adventure so I can cross-reference those AS WELL and check if I've got the gist right. I have them as PDFs on my iPad when I'm Dungeon Master. It's the only way I can do it. Having all these resources also gives me the confidence to DM. I guess it's like a performer (say, Ozzie Osbourne) going through rituals before they go on stage. It's only before all these are completed thoroughly that I can feel relaxed enough to deliver a good session. I'm a people-pleaser by nature so I want everyone to have a good time, and this will all make me feel confident and we'll get a good result.

Here are some of my dice. I have to buy new ones now and again as they run out of juice and don't roll high enough, so having the new ones lets the older ones recharge. There are a lot of people like me who think like this (although not all of them will admit it) and again, this is perfectly normal.

Some of my lovely dice

So I've done my prep for The Final Enemy and I'm now thinking what else do I need to do? I had a really productive and busy day yesterday but today I feel rather dizzy. I might have overdone it. But sometimes it's worth doing. Poor night's sleep though. One of those where I fought a mighty battle against the duvet.

I guess I'll read through everything on the day and add some more touches - like the characters of the boatmen who take them to the isle, weather, encounters on their journey there etc.

I'll be DMing more next week too - a Sunday session at the club where it can get very noisy and some of the players can be quite disruptive. We'll see how that goes nearer the time. I happened to have prepped this particular adventure - a 3-4 hour one we call a One-Shot  - about a year ago so that will give me a head-start.

But anyway, that's stationery and how it helps me. Aren't I great? YES.

Peter Andre

I'm having a bad week. Sorry to carp on about it. I can't start anything: even D&D stuff. 

We walked the dogs this morning and I walked down the road to Charlotte's to get some bread. I say that like they're achievements. That's where we're at. That's dementia. It's giving yourself a pat on the back for achieving almost fuck all.

Why is this happening? Executive functions are manifestly offline and I want to achieve some stuff but all I can do is watch YouTube clips and write this crap. I am engaged in an almost entirely passive capacity to everything. 

I know I should be doing something, just something. I could roll that character up or make notes from the next part of the adventure, or vacuum the house. And then those thoughts vanish into the ether and hours roll by watching YT clips.

Actions, a to-do list; like helium balloons rising higher and higher, they're just out of my reach or I can't grab or if I do I can't hold onto them. Can't quite make out what the tasks are - vaguely here or there then the writing fades away, and the thought is erased.

Another thing with dementia: standards of hygiene and dress-sense erode. I now need to make a concerted effort to take a shower everyday. Sorry if that's TMI.

This was my favourite jumper which I was still wearing but shouldn't have been. I did buy 2 new pairs of jeans the other day, but my shopping trips are militaristic in their execution - in and out with no deviation - so I didn't even think to look for jumpers, nor did it even occur to me that I needed new ones.

I slightly drool out of the right side of my mouth. This is a dementia-related thing - v standard. The tongue is the only organ directly controlled by the brain (cool fact, eh?) and is responsible for swallowing so it all correlates with brain shrivel.

Heard some awful news about a poor woman who has FTD and is behaving completely inappropriately in front of her 2 year old daughter. So cruel isn't it? Her poor husband. 

One of these days there'll be drugs to prevent these dementias from taking hold. As advanced as our medicine is it will be too late for the likes of me. I'm resigned to that fact though, but I think the future is good for dementia treatment.

Btw (stands for 'by the way'), I couldn't think of a title for it and then the image of Peter Andre appeared like a vision. What a genius that man is. Remember Insania?