Letter from the North

Awning, Lawn Mower, Birthday Treats and Chutney – 14-Apr-2008

Teresa in her Wendy House at Padstow on her Birthday

Sat 14-Apr-2018 

Today we had a trip out looking for an awning for Angelique. I did a lot of research before we went and Three Zero at Victoria (Roche) seemed best. Coming from the West, we had to do a U-turn at Cornwall Services so we decided to try it out. Rubbish disabled parking – 8 spaces in the whole car park, we did find one, but it would have been a nightmare had it been any busier.

We used the loo, picked up some food and something to drink and had a picnic in the back of the Angelique – Teresa refers to her as a “Wendy house” when used like this.

At Three Zero, we found the awning we wanted, Teresa negotiated a discount plus a discount on anything else we bought that day, added to which they had a £50 off voucher with every awning, so we selected things we needed at a bargain price.

After we got home I calculated Angelique’s MPG over the last 10 days or so – not pretty – around 19MPG, but she is a big girl with a 4-speed automatic gearbox and a 2.4L Petrol Engine. She needs a gentle foot!

We plan to get an LPG upgrade when finances allow. In the meantime, she’s definitely not a “popping to the shops” sort of vehicle!

Sun 15-Apr-2018 

I made some red tomato chutney – it turned out close to what I wanted, probably too hot (spicy) for my new “sensitive mouth” and so, next time, I will remove the chilli flakes and maybe half the ground ginger. But, I’m happy it tastes not bad considering its raw and has had no chance to mature. It will be interesting to try it in a few months’ time.

Mon 16-Apr-2018 

Granny’s ride on mower has arrived, this is a picture from our first outing (more on that next week)

It came in a very large box and needed assembling – not a job for the fainthearted. To be fair, the supplier provides an “engineered” delivery, where a man (or woman) comes with the scooter and assembles it and makes sure you are happy with how to use it. Teresa and I felt we were competent to do it ourselves, we are, I did ????

Tue 17-Apr-2018 

At work in Penryn as usual, followed by a trip to the North. Teresa came over for a while but then left me to my own devices. I stayed till 6pm, had a curry for tea (same one as last time, obviously!) and then came home and was able to stay out of bed till 9pm or so, which is quite amazing for me!

Wed 18-Apr-2018 

A full day’s work

Thu 19-Apr-2018 

It is Teresa’s birthday today so I booked a day’s holiday off work and we had a day out in Angelique. The trip was well-reported on Teresa’s Facebook page, primarily it was a trip to the Cornish Birds of Prey Centre at St Columb. Teresa loves birds of prey almost as much as she loves cats (hmm, both predators and carnivores, should I be concerned?). A number of years ago I took her to a similar centre near Huntingdon where she had a special half day that included handling the birds. Today she just wanted to look as we hadn’t been to the centre before and she wasn’t sure about it, so that’s what we did. I think she possibly regretted not having the opportunity to handle the birds ????

My two thoughts for today are:

  • Teresa had already said she wanted to go to Padstein (aka Padstow) for lunch. After the first flying session she re-iterated that wish – damn, I’d hoped she had forgotten. Old Bean would have flipped at the thought of going to a place he didn’t know, with tight time constraints (we had 1.5 hours and it was 20 minutes’ drive each way, in a vehicle that’s tricky to park and access without a disabled slot, …

“New” Bean still felt ALL those feelings and was just as stressed, but chose to put the feelings aside and do what Teresa wanted. The feelings were still there, but I chose to try to manage them.

New Bean wants to be this way and being Bean, he has a switch in his head that accepts this new way whilst still having all those old feelings, he just manages them because he needs to in order to support Teresa so she can support him (see, selfish really, not at all noble).

In any case, it worked. Teresa had a wonderful day watching birds of prey. We did find a parking slot (though not disabled) and got lunch from Rick Stein’s fish and chip shop. Exceedingly expensive but Teresa had battered mackerel which she said was delicious, and a little bottle of rose wine. Me I had tasteless chips but I could taste the ketchup I put on them – best I can hope for and some sausages that I’m sure tasted much better, but I could get some taste so it was an OK lunch, though not worth a fraction of what we paid, but that’s as much my broken taste buds as the Rick Stein effect ????, in any case it was for Teresa not me. Once again, we ate it Wendy House style in the back of Angelique before heading back to the bird of prey centre.

  • By the time we got home and I was absolutely exhausted. Were it not for the fact that it was Teresa’s birthday AND I’d encouraged her to have some wine with her lunch, I would have asked her to do the drive home. Instead, I knew I was doing the drive and so I made sure I conserved my energy and focussed on the journey, and all was fine. This is something I know I can do. In the days when I regularly had severe migraines, I found that I could push it to the background in order to drive home and then “let go” and that’s when it hit me hard, BUT I did get home. That same “trick” seems to work for me at the moment – so long as I make sure I conserve my energy as well.

When we go out for a long day, I consider a 2pm to 4pm finish to be my latest window for driving, if I’ve been sensible. We were home by 4pm.

It is necessary to be sensible with this level of fatigue or you are not safe on the road and that is unacceptable to both of us, so I am sensible. If I’m driving in the evening, I sleep in the afternoon to recharge.

Fri 20-Apr-2018 

Really just a normal day at work (in my office at home), but I spotted (on Facebook) this interview with Steve Silberman and if you are interested in autism and haven’t read Neurotribes then please go do so now!

Late on in the day we got the details of what the solicitors think I should get in compensation for the accident that started all this. I found it pretty derisory and lost four hours sleep overnight worrying away at it – the ability to obsess on something no matter how much you don’t want to, is a very autistic thing. The word for this is Perseverate (to repeat something insistently or redundantly)

Postscript

I try to describe how I can choose – within limits – to “manage” how autism shows itself on the outside and to some extent how it affects my ability to do things on the inside. This may well sound like I can turn it on and off and that is absolutely NOT the case. However, awareness of what is happening to me, and why, gives me space to manage the emotions and develop coping strategies so that they don’t become overwhelming. There is a cost involved in doing this.

It’s exactly the same as the conflict I have in finding being with people exhausting and stressful, and yet I love being with people. I do what I choose to do, but I make sure I have space to let go of the “managed” emotions and recover from the effort of managing those feelings.

It’s important to understand this because people often assume that if an autistic is calm in a stressful (for them) situation, then they can’t be autistic or they aren’t having difficulty in that situation. As we get older we often (but not always) become more competent in managing our reactions to our environment, but we cannot change them, they are still there.

It is not altogether different from this cancer. There are few, if any, external signs of it at the moment and little sign outside of this blog of the emotional and physical toll it takes on me, but that doesn’t mean it isn’t happening, it’s just you can’t see it.

Oh, and as many people with cancer and disability in general will tell you

  • I am NOT brave
  • I am not an inspiration

I am The Bean, Pendeen, 20-Apr-2018

 

 

1 Comment

  • Kate Mole

    Dear Bean,
    Thank you for explaining things. And it is so nice to read about ordinary stuff happening!
    Love,
    Kate.

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