Month: April 2018

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

 

 

Ride on mower, drying oneself, chutney making and whatever is a NAS – 07-Apr-2018

My replacement for Proper Job at the North!

Sat 07-Apr-2018

Today I spent a lot of time sorting out my new (commercial instead of ‘home brew’, but very effective) NAS/Raid storage we use here.

Now Teresa tells me I must explain to you what NAS/Raid storage is, the autistic me does not understand that you might not know and are incapable of using google, but the “people liking” me accepts there may be the odd person who doesn’t ????

Network Attached Storage is a disk drive attached to a network (Ethernet, WiFi, …) that is accessible (usually) to everyone in the building. So, in our case, mp3s’s and photos all go on the shared storage and everyone can get to them. Raid (Redundant Array of Inexpensive Disks) is a better way of using the disks so that if one dies the others can keep going with ALL the information until you replace the dead one.

I’m not convinced that makes it any clearer but a proper answer is a full day’s talk and I’d have to charge you for that!

Once I’m no longer capable, Teresa will still need to use (the NAS) and “fix” it, so something more mainstream is best.

Also, once Teresa got back from town with all my ingredients, I started prep for what has to be one of the strangest meal inventions I’ve ever come up with – with an inspired suggestion from Teresa that made it work.

  • A layer of cooked and sliced (but not pickled) beetroot
  • A layer of chickpeas slow cooked with some hot chillies so the chickpeas themselves are spicy hot
  • A layer of cooked and sliced potato
  • A sauce based on one given to me by my daughter for Coronation Chicken.

It cannot possibly work … and yet it does, it’s really scrummy.

This was the second time I’d made it, the first was pure experiment but I did write down what I’d done, nevertheless I was still concerned I may have missed something out, but no, all good

Sun 08-Apr-2018

A day to sort hanging the blind in the bathroom, but I stalled because I found I needed a mini angle grinder and thin blade metal cutting disc which I will pick it up from Screwfix on Monday. It would be nice to cut the metal header by hand, but there’s no way my shoulder will tolerate that. It’s hard enough putting in screws for the brackets at shoulder height (or a bit above) and I may well need to carefully use an electric screwdriver (easy to go mad with one of these, and strip the head if not careful and it’s still an awkward height for me, but probably easier than all that twisting to screw in things).

Finished my meal-making, assembled it and an hour in the oven it went. It was just as scrummy as last time, which was a relief.

Mon 09-Apr-2018

This morning I woke up to find half the power off in the house. One of (two) Earth leakage trips had gone, taking out much of downstairs – luckily not all because the wiring in our house is so weird. By process of elimination I worked out that it was “kitchen sockets”, except here that means the sockets on two sides of the kitchen, but not on the third side which are, I think, fed from upstairs, or at least are on a different breaker for those sockets and shared with some upstairs!

I tried all the sockets and none of them was to blame, so since I wanted breakfast I moved the microwave (for my ready brek) and kettle to a working socket, grabbed a multi socket adaptor and got the fridge and them working from the cooker power socket (which was working).

After breakfast and a cup of tea I remembered that the boiler was powered from a socket hidden behind our cooker. Quick check and yes, it was the boiler. The boiler has also been losing heat on the hot water side for a day or two so we were already planning to ring our boiler man, now it was essential. Our boiler man, Duncan, is fantastic. Teresa rang him first thing and he said he would be out this afternoon – brilliant.

Wet shave again (using a kettle of hot water) – this wet shaving is clearly working and I can now “file away” the electric razor I have been using since the accident – hooray.

Popped to Screwfix to collect angle grinder and extension bar for screwdriver (electric). The screws for the blind clips are right at the top of the window reveal and being classic Cornish granite, that’s a foot away from the surface of the wall and you can’t hold a screwdriver within the reveal without scraping your knuckles and pushing the screwdriver off the horizontal so it slips and rips the screw heads.

After Screwfix it was off to the optician, no problem, in and out, I like the glasses:

Mind you I seem to cause quite a few injuries as I walked along Market Jew Street to the opticians and back (well, waddled really, I’m rather slow and ungainly with the Paz feet and dodgy hip 🙂 ). So, several twisted necks and a number of people getting dizzy as they span 360 degrees to check what they’d seen. For goodness sake, have they never seen a bloke in a frock before? We wondered whether it was the fresh influx of tourists over Easter, as the locals are surely used to me by now?

We had a lovely drive home, along the prom and through Newlyn, the sun was shining and the sea was bright and calm – what a wonderful place to live and what a lovely day to be alive!

We got home and found a letter from the DVLA saying they are happy that I am medically fit to drive. I had to notify them about the broken bones and the cancer; I was sure it would be Ok as Mr. Butler had said I could drive, but there was still a worry in the back of my mind, so very pleased to get the all clear in writing.

This afternoon Teresa went out with daughter for a cream tea and so I was left at home to work and look after the boiler man (not that he needed my help!)

A couple of hours and a few spare parts later, and all sorted and hot water is back.

Tue 10-Apr-2018

To work in Penryn as usual, all went well, including the drive. I continue to be much more “chilled” in my driving, which Teresa is very happy about ????

When I got home, I went over The North to meet a friend from Cambridge who has a cottage down here. Came home about 5:30pm and continued to be quite awake till 8pm or so, which was rather nice!

As I’ve said (I think) I no longer drink alcohol, so at the North, it’s J2O, Appletise and my latest hard drink is a pot of tea!

Wed 11-Apr-2018

Just getting on with work

YEAH, showered and more to the point dried myself without help today. As it was last time, the shower bit was ok, except this time I didn’t need a sponge on a stick for my left underarm. I still use a cloth on a long stick for my back but didn’t need it for either leg, so good progress. Drying has been difficult (impossible without just hanging around waiting for it to air dry!) without help because of very limited shoulder movement, that has eased enough that I could manage today (uncomfortable but doable).

Thu 12-Apr-2018

Washed and dried without needing “aids” (like sponges on a stick), still restricted mobility in the right shoulder (rotator cuff I suspect) but we are clearly on the move, phew, taken long enough. Physio on Friday and so will get some feedback on my progress. The main thing is that I have to be careful to pace myself, be guided by pain, little but not too much, bit of masochism really, without pain there is no progress, too much pain is damage!

I finally bit the bullet and the ride on mower (aka mobility scooter) is on its way, the only nice thing is that it matches my glasses (pale blue, turquoise or sommat like that).

A bad evening. I had just been talking to Teresa about how manageable the Paz side effects have been, when I was hit by severe diarrhoea, two rapid trips upstairs and one dose of Imodium plus another of Imodium Instant (I find it truly does work much faster) and things slowed down, but it was a reminder of just how “on edge” poo can be. Given the only “unusual” thing I had with tea was some (frozen, but cooked) broad beans, we wonder if that was the cause. I’m not getting a lot in the way of fruit or veg at the moment and having the broad beans was an experiment as I do like them. I also love broccoli but I lost the ability to taste that. I might try the broccoli again to see if it’s any better and leave out the broad beans for now and see how things go.

I appreciate I have been somewhat of a failure in the “poo reports” of late, but I felt the squeamish amongst you needed a break and things were basically Ok, good days and bad days, but the bleeding problem had gone. Mind you, having a goodly amount of beetroot for tea earlier this week meant things turned pink after a loo trip, but that’s a well-known thing, beetroot is just so strong in colour, it taints absolutely everything, wee included!

So, rest assured, the “poo reports” are never far away, so if you are missing them, they can return at the drop of a hat 🙂

Fri 13-Apr-2018

Quick trip to Physiotherapy at 8:30am. As usual, I have been ignoring their exercises which were far too simple, and frankly, boring. What I do is use my arm as much as I can whilst being sensible and letting pain guide me. This was approved of by the physio and my progress deemed excellent! The physio’s normal process would include a lot of joint manipulation (as the shoulder was out of action for a long time) but because of the poor healing of the collar bone, she can’t, so it’s down to me to work out what’s best and she just monitors progress and suggests if I’m not doing enough in one area. I’m very happy with this approach as I know what I can and can’t do and I WILL always push myself (and Teresa will always take me to task if I let things slip at all) so I don’t need a stranger doing it for me.

I was very scared before going as this was the first “medical” trip I’ve done on my own since the accident. Teresa has always been there, not always with whoever I’m seeing, e.g. she has dropped me off and collected me from the GP. But, she has ALWAYS been a part of the visit. Today she went off to a sing in a choir she joined when we first moved down here, but hasn’t been to for some years. So, I drove myself to Physio. At one point Teresa said she wouldn’t go to choir, but we decided that was just silly.

Of course, it went all ok and yet it was frightening at the same time. No matter how you fight it, there is always a bit of liking to be looked after, being a victim, especially when it’s all so scary (the cancer, not the broken bones, but it’s hard to separate the two) and escaping from that “need” to be cared for and to be your own (non-gendered specific) person, is not easy. I certainly wanted it for Teresa’s sake as much as mine, but that didn’t stop it being hard. I can see how easy it would be to settle into a “being cared for” state and we neither of us want that to happen, for us as individuals but also because it’s a slippery slope on the road to giving up, and I’m not interested in that!

Increasingly, I will just do the medical stuff on my own unless it’s something Teresa wants to be part of, that way she can get back to her (new) normal life and that has to be a great thing for both of us, but (so far as I’m concerned) especially for her.

Working out what I can eat is an ongoing issue for me, driven by ‘dry mouth’ syndrome and wonky taste buds which are side effects of the drugs. One of the things that makes my lunchtime bread rolls work for me, is tomato chutney. I use quite a lot as it’s what gives me the moisture I need and tomato is something I can still taste, but I hate having to constantly buy it, especially when I used to make my own apple chutney in vast quantities (well it would be vast if I do it). So, I have researched some recipes for red tomato chutney, found one that has a lot of potential for “tinkering” and will pick up the ingredients tomorrow to make a small (for Bean) batch to test. If it works, actually with both Teresa and I being good cooks, it WILL work, then we’ll grow some of our own tomatoes (in grow bags, as we don’t have much in the way of garden for growing food) and then I can make proper home-grown chutney. I’m looking forward to that. All part of getting back to “normal”.

Postscript

On a different note, an interesting, albeit “headlines only” article on the BBC Web site Why some cancers are ‘born to be bad’. Research is not clinical practice, so this does nothing for people like me, but in time, …, it does however highlight why kidney cancer is so difficult as the tumours vary so much from each other, as does their aggressiveness, which means treatment is somewhat hit and miss!

One phrase I found interesting was “The studies also revealed that the earliest mutations that lead to kidney cancer were happening up to half a century before the cancer was detected.”, for me that could be back when I was 13, how scary is that???

 

 

Gin, wet shaving, drugs working for now and some DIY – 31-Mar-2018

Teresa likes this!

Sat 31-Mar-2018

Teresa spent today at a singing workshop. I love this, she is branching out of the house and happy to leave me to get on with things. Slowly but surely, we are managing to move towards a normal (the “new” normal) life from the “all hands-on deck”, “pull up the drawbridge” and “repel all boarders”, siege situation we’ve been in pretty much since the early days of recovering from the accident and getting to grips with the cancer.

While Teresa was out I managed 8.5 hours work – catching up on time lost last week.

Sun 01-Apr-2018

Another 7.5 hours work!

Mon 02-Apr-2018

Bank Holiday, half a day’s work done. I know it’s a bank holiday, but I will lose most of Wednesday going to the clinic for scan results, so I need to get ahead.

I also managed to re-hang some cupboard doors in the annexe (Teresa had repainted them) and put up the glass fittings on the ceiling lights – above head work and hence all left hand with Teresa supporting the glass while I fit it – the fixings are tricky and need a light touch (not Teresa’s strength 🙂 )

But we got it done and it was something Teresa has been asking me to do for weeks, if not months, so it was nice to have enough mobility to sort it. We had to pace ourselves, me because I just get tired, Teresa because she has been poorly all weekend, what a pair of crocks we are!

Tue 03-Apr-2018

Today I drove into the office, this was my second trip under my own steam and it went just as well as last time. Working from home is all well and good and it lets me get more done before exhaustion hits, but it’s also good to touch base (horrible phrase) with the team and indeed the office, and once a week seems to work for that. This week I left at 1pm instead of 2pm as I could feel the fatigue building and needed to drive before it hit. All was well.

Although not actively thinking about tomorrow (results day), I’m sure it was working away inside me all the same.

Wed 04-Apr-2018

Results day. We actually saw the oncologist this time. We were a little apprehensive as we had, effectively, lodged a complaint against him with Pals, so didn’t know how he’d be with us. In the event, it was all very civilised and we all acted like nothing had happened. I guess it helped that the news was “good” (in this world, good means not BAD). Teresa was a happy girl after the news; Bean? Well, he’s autistic, so a shrug of the shoulders and a “we’ll see what happens in three months’ time…”

This is the summary of the state of play, as reported to our Kidney Cancer Group:

Well, Wednesday was scan day. A long update but I wanted to capture a summary of where we are five months on from the Car crash started us on this road (I refuse to call it a journey )

I am on Paz. My scans have been somewhat out of step with the treatment due to the accident.

The first scan was on 27th Oct (2017), for shoulder and chest plus another on 30th Oct for abdomen and pelvis – all triggered by the accident which led to my cancer being identified. Formal diagnosis was on 13th Dec, when the scans were 6 weeks old. Because of high blood pressure, I didn’t start Paz till 18th Dec 2017.

My first review was on Valentine’s day this year, three months after “formal diagnosis” but closer to five months after the original scans. This showed growth in the main met in my shoulder, suggesting Paz wasn’t working. The oncologist decided to scan again in six weeks to see whether the growth was down to the long delay between those first scans and starting treatment. Wednesday we got the results of this “intermediate” scan.

Much better news. The mets in the lymph nodes in the lungs and near the spine are no longer visible. The shoulder has either not grown or there is small shrinkage (a mm or so), the primary on the kidney may have grown slightly but remains within the accuracy of the scan so considered to be stable.

Overall, it seems like Paz is working for me, for now, obviously this can change at the drop of a hat.

We left the clinic feeling a lot happier than we went in! Loaded with 3 months’ supply of drugs:

Side effects of Paz continue:

  • Nausea – managed with Ondansetron
  • Blood pressure – managed with a cocktail of drugs
  • Diarrhoea – Ok, manageable with Loperamide and often just with the Ondansetron which tends to cause constipation, so between it and Paz, things are Ok in the bottom department most off the time
  • Sore Feet – udder cream helps a bit, not a major problem and no cracking
  • Fatigue is the worst, I can hit that brick wall any time between Lunchtime and 6pm, depending on how much I do. Just talking to people exhausts me. Still, I manage to do 37.5 hours a week (over 7 days) for work, though I don’t get much of a social life after that, but it keeps a roof over our heads
  • White hair, I’m 63, who cares, I look distinguished

It could all be so much worse. I still have no visible (to me) signs of the cancer itself and without that accident, we would still be ignorant of what was going on inside me. Instead I now have stable tumours with hope of shrinkage, I have to be grateful for that.

As for the accident, the bones are healing incredibly slowly (thanks Paz), but after 5 months I can use my right arm sufficiently to be allowed to drive which is a real psychological lift. It will probably take many more months if not years before the collar bone fully heals, if it ever does, but it’s already healed enough to make a big difference to my life.

Bean (and Teresa)

We left the clinic with umpteen prescriptions for Paz and for the anti-nausea drugs. This usually means waiting twenty minutes for them to be filled (it has to be filled in by the hospital pharmacy because only they have the cancer drugs); that gives us just enough time for a coffee. This time a cockup on one of the prescriptions meant that we had to wait over an hour, pushing the car park over the two hours limit (so, from £2.80 to £5.60). Teresa was a bit grumpy about this, given we were only likely to go over the limit by 5 minutes, so she toddled off to move the car out of the car park and wait across the road. Eventually I waddled out, laden with pills, and Teresa picked me up in the drop off bay outside the hospital.

That “waddling” is down to sore feet, dodgy hip and fatigue!

I’ve mentioned before about having to consider mobility aids, especially if we are to be out walking for a few hours (any shopping trip), as it leaves me exhausted and unable to enjoy whatever we are actually doing. So, on our way out of Truro we called into one of THOSE places, somewhere Teresa dislikes talking about never mind going in to. But in we went and bless her, in she came despite hating it. I do understand, it feels like “acceptance” of my terminal decline, and she’s not keen on that. Me neither, but I view it like the tool I use to help open jars, useful and accepting limitations without giving in to them – I can’t open jars like I used to, due to lack of strength in my right arm, that’s the accident not the cancer.

Anyway, we looked at electric scooters, found one that was Ok. It comes apart enough for Teresa to be able to get it into a car, and it is OK for me to drive about. We both hate it, Teresa because of what it means and me because it helps me feel even more like an old lady (see previous references to Margaret Rutherford 🙂 ). We took away a leaflet, Teresa needs time to get her head around this. Neither of us is keen, but we are both realistic enough to accept that I can do less that I used to. Indeed, this Saturday Teresa is going into Penzance for a ‘Table sale’ on Chapel Street, followed by a trip to Sainsburys, the thought of walking up and down Chapel Street, followed by walking around a supermarket, is something I can’t face. I could do it, but I would lose the rest of the day to fatigue, so it would be a perfect time to use the “buggy”, blah, …

That evening we went to Pz Folk Club to see Vicky Swan and Johnny Dyer. It was the first time at the folk club for me in a long time. I don’t get on with rooms full of people at the best of times. The organiser, Hilary, made sure that I had seating that worked for me, we also took my cushions so I survived, but it’s hard just sitting.

What I did do was drive home so that Teresa could have a drink, especially because, having changed hands, the Benbow now has an interesting selection of gins – Teresa does like her gin. So, I made sure I would be okay to drive home. It’s the least I could do since she rarely gets to drink when out because she’s on her own and has to drive. Well, this evening I could and did drive – and her gin of choice on this occasion was Opihr.

Thu 05-Apr-2018

Teresa finished decorating our bathroom some weeks ago. I had taken down the old light fitting and the mirror above the sink (and isolated the mains of course!) so that she could paper that wall (we both love colour and pattern and the bathroom has been a grey and white desert since the day we moved in). We bought new lights and mirror a while back and poor Teresa has been patiently waiting for me to put them up for her. I have been delaying because it needs me to have reasonable movement in my right shoulder. Today, Teresa decided I was good enough and needed a kick in the pants. Kick duly delivered (I didn’t actually need much persuasion to be fair to me) and about an hour’s work got everything done. The mirror is too low for me (limited by the slope of the ceiling) and the lights are in my eyes, but Teresa and Daughter are happy. I just have to crouch down to shave!

Next task are blinds, three of them, one in the bathroom in the main house and two in the annexe.

For this I need:

  1. To cut the metal work at the top but not the slats
  2. To cut some the wood around the window reveal so that the blind fits without adjustment
  3. To cut the metal header and trim the slats

None of them are big jobs, but all require me to do some work above shoulder height and/or use “tools” in my right hand. Like the mirror and lights, I am as much afraid as unable, in truth more afraid of using my arm. It’s a confidence problem and stupid really, I am quite capable of using but not over using it, I just need to get my act together, so poor Teresa has to “nag” me and then feels guilty. It’s not fair and I need to have a go this weekend at getting at least one blind up.

Fri 06-Apr-2018

I decided to try for the North Inn today. Thanks to the new mirror and some mobility in the right shoulder, I was able to wet shave for first time since accident, even with the low mirror it was wonderful!

I had a fantastic welcome from the locals a.t the North (well some of them, others ignore me, but they always have ???? ) Teresa and daughter joined me for a meal at 6:00 pm, I wanted to try one of their curries (which have a well-deserved reputation) since that’s something I can eat. I selected a medium heat, pork one. I can no longer handle very spicy food and pork worked so well at the Gonad last week. The North’s curries are quite dry, which isn’t ideal for me, but this one was wet enough for me to cope and was very nice.

Again, it was nice all three of us having a meal “out”. By the time I’d finished eating I’d hit my fatigue wall just by sitting and reading then eating plus talking to people (it’s the latter that knocks me out, yes talking is exhausting, welcome to the world of autism where people, even people you like, are exhausting work to interact with), add on drugs that knock you out anyway and …

So, I was home and in bed by 7:30pm! Still, I’d enjoyed my afternoon out of the house even though I was mega nervous about going over there in the first place!

Postscript

Teresa had a tough week up to Wednesday, horrible dreams (they’ve been going on for weeks now) and a very upset tummy for the early part of the week. I get upset tummy all the time and can handle it, but it was hard to see her suffering with one, it’s hard to see her poorly at all, I can’t help her, I can carry our joint “burden” of poorly, she doesn’t need to have any. Yes, that may sound like a strange sentence and I can’t altogether explain it, but it does say something! Feeling powerless to help her is only a mirror of how powerless she feels about my condition, the difference is I can do something about mine, within reason, and so don’t feel powerless. One can tie oneself in knots trying to get one’s head inside the mutual support Teresa and I need to have for each other, the mutual helplessness we each feel for the other’s problems, …

 

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

Postscript

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.