Letter from the North

Scanxiety, a good day out and muppetry on the Coast Road – 31-Mar-2018

Just me about to start my starter at the Gonad on Friday

Sat 24-Mar-2018

Today started with an exploration of Angelique while Teresa was out at a singing workshop. I quickly established that the “bed” (made up from the middle row of seats and some box seats in the back) will need some help to get it level, never mind comfortable.

Sun 25-Mar-2018

Teresa and I spent some time sorting the bed in Angelique and came up with some solutions. All we now need is implement them – which needs some carpentry by me (which I’m just about able to handle with my dodgy collar bone and shoulder) and upholstery by Teresa.

Mon 26-Mar-2018

First thing this morning there was a knock at the door and there was a police woman wanting to see me. Teresa had to ask her to wait a few minutes as I was just finishing dressing in the sitting room!

It turns out she needed a statement from me about the accident back in October last year, they hadn’t taken one at the time. It’s not a problem for me, I won’t say any more about this for now but I will update when I can.

Tue 27-Mar-2018

First time back at work under my own steam and for more than just a visit.

Naturally I had a rubbish night’s sleep, being stressed about today – but of course it went fine. I knew it would, all the time I was worrying, but it makes no difference.

So, I was up at 5:45am (I was awake before this) and got to work at 7:30am. No problem with the journey, Angelique wafted along perfectly, couldn’t be happier. No racer, I only overtook one vehicle in each direction and that was because I had mega clear space to do so.

I had a great day at work (left 2.00 pm-ish), and it was fantastic to feel I was actually part of the team over in Penryn. Makes the other four days I am at home less isolating.

Wed 28-Mar-2018

Three medical visits in one day, which is better than having them spread across the week (like last week: Monday, Wednesday, Friday) but still a lot more than I would like!

9.00 am it was off to the phlebotomist to take bloods to check kidney, bones, liver and that blood itself is all in good working order (or not). Used right arm instead of usual left as I was keeping the left free for the CT scan as they require it to be bent above my head, and that’s not happening with the right shoulder!

10.00 am CT Scan to check growth or otherwise of tumours. Went fine, though there were some issues with the blood not stopping after they removed the cannula they used to inject the contrast. It did stop (eventually), but my arm felt somewhat battered for a few hours afterwards. Results day is in a week, so Scanxiety starts here.

12:10 pm Optician and all ok, phew what a relief. I really liked the optician, he was jolly, communicative and did a good job. He could see one floater in my left eye, none in my right but he said they often “hide”.

So, the good news is “yes, I have floaters, no they are not a problem” YEAH! They can often be caused by trauma, so quite possible they were created during the accident! They also happen as you get older, of course they do, what doesn’t go wrong as you age!!!

In other good news, my prescription hasn’t changed, however I wanted a change of glasses anyway and I have some gorgeous turquoise ones being sorted. Teresa is not sure about them, but I love them.

At some stage (when driving home from the optician I think, or maybe when we were at Sainsburys) Teresa said that this weekend she wanted to go an antiques fair being held at Royal Cornwall Showground in Wadebridge at the weekend.

Despite hating the thought of having to be on the roads on Good Friday at the start of the Easter Holidays, I said yes, because she has wanted to go for years now and I’ve avoided it. These days I do pretty much whatever she wants to do as it matters to me to make sure she has as many memories of us doing things together as we can squeeze in – whether that’s over the next two years or ten years, for as long as I am physically able, I’ll do it, no matter how much it’s not something I can be bothered with.

Thu 29-Mar-2018

Spent part of today prepping Angelique for her trip to the antiques fair at Royal Cornwall Showground tomorrow which will include a picnic lunch to try her out. Got water in, gas in, made cheese and tomato chutney rolls and hard boiled two eggs. Hard boiled eggs are mandatory for me in a picnic. My children are similarly insistent, even my daughter who didn’t like the yolk (or was it the white?). In any case, they are grown up, but I still insist on my hard-boiled eggs.

We will picnic in Angelique to test out her (rather basic) facilities.

Next, I did some prep for our (early) Good Friday meal. I tried to “up” the flavour of what is normally a subtle fish, mash, egg sauce and peas meal that I’ve had since childhood. It ended up more like a fish pie.

After all the prep (cooked the fish and potato) I spent a nice afternoon talking on the phone to a friend from Cambridgeshire, the only person from my first counselling course worth keeping in touch with. I then finished making up tea but then I had some sixth sense and asked Teresa to make the cheese sauce because I felt it would be beyond me. I finished my prep, put the meal in the oven ready, went through to the sitting room and massive waves of fatigue washed over me. I tried just laying sideways, but when Teresa and Daughter came in after making their variation on the meal, I just couldn’t cope with eating, I couldn’t cope with the light and I couldn’t cope with the sound of the TV so I took my pillows and cushion upstairs to our bed and crashed out. Teresa was mega worried and came up after eating. I tried to reassure her I was just wacked out and she left. About an hour and a half later I felt a lot better, not sure whether I’d slept or not, went downstairs, had some tea and watched the TV with them.

The tea didn’t quite work, I probably added too much magic juice (Lee and Perrins) on the basis, if one tablespoon is good, two are better. On balance, I feel one was enough ????

About 10.00 pm, I settled in bed and had a reasonably good night

Fri 30-Mar-2018

Up at 5:30 am, fresh as a daisy, which is quite normal, and no ill effects from yesterday. There is just this wall I hit when the batteries run out and my body stops dead (well hopefully not actually dead of course, but, …) and once recharged it’s ok, and back to normal. The trouble is,  the batteries don’t ever last a full day any more and if I do much, they run down even faster!

Anyway, off we went to Wadebridge (antiques fair) with our picnic loaded. The journey was relaxed and easy, Angelique just wafts along nicely so long as you are prepared to be chilled (I am, I worry that Teresa won’t be so much and she’ll bedriving home!)

The antiques fair was fine. Disabled parking no problem though you then had to walk up a hill to get to the outdoor stalls, which was very disabled unfriendly, but whatever. I took my time, Teresa beetled on ahead looking at the stalls and having a throwback to her times as an antiques dealer (mostly trading down in London at Bermondsey market and, for a while, Portobello Road)

It’s amazing how many cars thought the disabled area was a place to just drive and stop (a phrase Teresa and I use to describe people who don’t so much park as just come to a halt, whether they are within lines or not!) in this case, blocking in the disabled cars (which happened to include us). The security folks were wonderful and toured the site to find the offenders, but all they had to do was turn their backs and another would be at it.

I just don’t get people who seem to lack either common sense and eyesight, or who care only about themselves, or both.

Hey ho!

After the fair Teresa wanted to try an antiques place in Wadebridge itself, but it was pretty useless; she then wanted to try a charity furniture shop, ditto, she then took over driving Angelique. That was hard for both of us, Teresa because she hadn’t really driven Angelique before, and she takes time to get used to a new vehicle – especially an automatic which she’s never driven before – and for me because I had to try (I failed of course) to bite my tongue and not “help”.

Still, we managed and after we turned down past St Erth, Teresa commented that she’d had a lovely day, …

That was the trigger, I interrupted her! ‘Shut up,’ I said, ‘I’ve got something I want to say.’ In the past she might have got upset, but we both understand my autism much better these days and know that when I have something I need to say, I have to focus without interruption. When I have a moment that I can generate language (verbal) I need to grab it because seconds latter I will lose it again, so, when I say ‘Shut up’, I am not being horrible, it’s the quickest thing I can say without losing the actual words ready to come out, then I have to take a run at the words and hopefully I get them out. If Teresa questions me for a moment as to why she has to shut up or tries to persuade me how rude it was to say it, then I lose the words and the conversation is lost. It’s not easy for her to understand, but she does now and it often does end up in her favor (like the meal).

As we’d been travelling I had been thinking, in my very non-verbal way, that it was a good day to try out the Gonad (The Gurnards Head, but known affectionately by the other name – thanks Rosie) for lunch, but I was worried about the drive back along the coast road with all the muppitude driving of tourists on Good Friday (a well-founded fear I might add!)

I also didn’t know how to suggest it, I was struggling to find language, which must sound really bizarre to those of you without this particular problem! Anyway, Teresa saying what she said gave me a trigger to use and I did. She loved the idea. We arrived at Sainsbury’s where she had been planning to practice reversing (not something I was looking forward to), rang the Gonad, while we swapped positions. They had a table so off I drove and the rest is on Facebook, but summarised here

Teresa: Gurnard’s Head has redeemed itself since our last visit. Best bloody mary ever, made with smoked vodka (don’t think I’ve ever had smoked vodka!). Oh and David could actually taste the food ???? ???? ❤

Bean: And in that simple statement is an awful lot of meaning. Being able to taste, never mind enjoy any meal but especially in a restaurant is a miracle. I had belly pork to start and collar of pork for mains and however they cooked them and whatever they were served with resulted in two delicious courses.

We had a lovely afternoon, I drove home along the coast road, followed by a vehicle glued to my exhaust who clearly didn’t understand that passing places on the narrow sections are for a single vehicle, so if I pull in to let a car past, they meet the car behind me in a narrow section and can’t progress and neither can I and we are gridlocked without a lot of careful manoeuvring. If both cars, the one behind and the oncoming one, are muppets it’s a nightmare, if more than one car behind and/or in front are muppets it’s impossible and if a bus is oncoming, well, …

I am well used to the road and drive slowly (hence the tailgaters who think I should race along) and tuck in tightly to let less able drivers get past me. Even so, it’s a tricky drive, but a fantastic road.

Down here we always wave when letting someone past or passing someone who has tucked in, I must have passed 50 vehicles on that road, and only a handful acknowledged, so I reckon the vast majority were tourists or second homers who don’t seem to want to try and understand the local roads and think they are dual carriageways.

The lack of acknowledgements, never mind lack of “due care and attention” is something I have heard the locals mull about down at the North and I can tell you, it’s not approved of at all…

Oh well, moan over, we made it and had a lovely ending to the day.

I even managed a couple of hours work in my office before hitting the brick wall, so a great day


This fatigue wall is very real, and I have to plan my activity around it. It hits so early (4.00 or 5.00 pm sometimes, as early as lunchtime on occasion), that if we’re going out in the evenings it is necessary to pace myself all day (and indeed make sure I rest in the afternoon) to ensure I can cope.

This going out with Teresa is all about me making memories for her, it is my way of saying “thank you” for all she does to help me and cope with my emotional ups and downs, never mind all of hers too!

I was really pleased we managed to enjoy our meal on Friday, even if it meant that every time I said I could taste or enjoy a mouthful, she cried, it was happy tears! However, the meal was the icing on a good day and it’s the good day I remember not the meal.



1 Comment

  • Kate Mole

    Dear Bean,
    It all (well, most of it) sounds absolutely lovely, and I’m so glad you were able to do all of it and enjoy it so much. That’s my favourite road, and the Gurnard’s is my favourite hotel too. A good day…..

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