Letter from the North

Not so much poo, a lot of fatigue and medical tests 18-25-May-2019

On our way to Manchester, nice Teresa smile

This blog may give you some clue as to the lengths we are going to try and get the poo under control, but don’t try to second guess us, it’s not quite what it may look like, but we want to keep our powder dry until we are sure especially since this weekend was a major setback.

Sat 18-May-2019

We need some shopping so I went to Sainsburys so Teresa can do wall painting/cushions. Of course, by the time I was back I was tired so rested.

After my afternoon nap I made some onion free tomato chutney.

Still got bad diarrhoea – Loperamide

Sun 19-May-2019

Not awful this morning, nothing else, very tired

Made chicken/pasta (sort of) meal – no onion, no tomato, no garlic

After my nap I sorted out Teresa’s cushion measurements, they are now accurate 🙂 I love Teresa to bits but her spatial/measurement skills are not great (rubbish), but I didn’t interfere while she did her thing and then helped sort it out when she was ready. Mind you easier for me to “fix” her mistakes than get it right in the first place but as a quasi-male I couldn’t possibly admit that could I? Oops I did, ah well 🙂

I wanted some more flapjack for “snacks” but Teresa too busy, so I sorted myself. Now that should be NO big deal but I’ve never done “sweet” cooking before and it was mega stressful. Logically that is stupid, flapjacks are easy, but autistically it is something different and a nightmare of stress. I realise this won’t make sense to you unless you are or live with an autistic, but trust me, rows can grow from something so trivial.

It didn’t but it was tough all the same, Teresa, bless her, came in a provided some comments and encouragement and that got me over the finish line. Darned nice flapjacks too 🙂

Mon 20-May-2019

Moderate diarrhoea in the evening, took Loperamide

Tue 21-May-2019

A good day in the office today, best for some time.

Almost no poo in the morning, regular Diarrhoea this afternoon – no worry. Bedtime – severe abdominal cramps, major diarrhoea, a deeply unpleasant 20 minutes on the toilet. Loperamide – obviously.

Feels like our new “regime” has failed disastrously, but we are not ready to throw in the towel yet, we need time to see how things proceed and tweak, so far, we have explanations for problems.

But however positive you are it was not a great evening

Wed 22-May-2019

Digestive track not too bad today, maybe we learnt something new over the weekend?

Thu 23-May-2019

Voted in the European elections, digestive track a little happier still, fingers crossed?

Tomorrow is CT scan and assignment results, could do without the stress especially as I won’t have access to the assignment results until I get home from the scan. No stress there then?

If I pass the assignment, I get a PgCert in autism studies, so it’s not just another exam, it’s also the gateway to the 2nd year of the MA, failure means I don’t proceed and wouldn’t want to as I did the best I could, given my current limitations.

Fri 24-May-2019

Hmmm, CT scan easy peasy – lie down, quick needle in the arm, hold your breath for 15 seconds, move your arms, wait another 10 seconds, job done! I’d arrived 45 mins early and was out 15 mins before I was due to go in 😊

Mind you, one hell of a bruise – compare it to the pinpricks in the last Blog!

Lots more colour than it seems here!

That pic was taken 10 days ago, still plenty of colour this morning!

At West Cornwall hospital I’m now “David Bottomley (aka Bean) and people call me Bean, no fuss, no demands, low key recognition, that’s how I like it. It came about because of a conversation I’d had with nurses at my venesection clinic about gender (well I do swan around in a frock) and I asked how easy it was to change my records, this was a simple change since I haven’t legally changed my name (and not important to me to do, dying seems more significant!)

At West Cornwall hospital I’m now “David Bottomley (aka Bean) and people call me Bean, no fuss, no demands, low key recognition, that’s how I like it. It came about because of a conversation I’d had with nurses at my venesection clinic about gender (well I do swan around in a frock) and I asked how easy it was to change my records, this was a simple change since I haven’t legally changed my name (and not important to me to do, dying seems more significant!)

However, assignment results still not available (4:50pm), apparently maybe not until 6pm. Last time it was around lunchtime, so you can imagine the stress and tension in waiting, especially knowing it’s a bank holiday weekend so if late, may not be until Tuesday!

Apparently, the results came in around 9pm, I was asleep and saw mine around 2am. The feedback was right, the mark was decent, I cannot complain. I knew I hadn’t done a good job, but apparently, I hadn’t done an awful one, quite content. As an autistic I prepare myself for the binary (abysmal fail or total excellence), this wishy-washy middle ground is hard to process!

Only real criticism I have is that the results were very late but there was no explanation from the University that a) they would be late and b) why. “Stated” policy is that they should be done by 6pm, so 9pm was a long wait for all the students.

Postscript

Hmmm, this should have been it and I publish over the weekend, but things got on top of me, so here is next week too

The Bean, Pendeen, 26-May-2019

Sat 25-May-2019

We are off to Manchester tomorrow for the Autistic UK, “The future is Gold”. The worry about the journey, the hotel, the event and getting home again is more than sufficient to paralyse me. Plus, the after effects of the CT scan are never far away.

Nothing happened today

Sun 26-May-2019

Left at 9am, arrived 6pm, 360 Miles later. The hotel was fine – though not up to Teresa’s standards as she repeatedly communicated :-). Still a couple of gins inside her and she mellowed out a bit. There was a wedding in the hotel that night and it wasn’t the most restful, but I got an OK night.

Mon 27-May-2019

Got to the venue OK, everything was organised for me in my mobility scooter, couldn’t ask for better.

The venues audio was rubbish, in particular they had set up their mic’s so that there was a constant low-level low frequency feedback hum. It had me (and a number of others) crawling up the walls. Autistics often have noise sensitivity and low frequencies are mine. In the end I was forced to leave the hall, in tears and retreat to the quiet room (they specifically have one as is normal at autistic events) until the problem was sorted. The organisers did their best, but the venue was just incompetent, no need, the fix was to move a mic, not exactly rocket science and could have been done 45 mins earlier!

The venue also excelled itself by putting the disabled loos off a narrow corridor with a tight turn to get into the corridor and another into the loo. I was walking (staggering) so OK, but those in wheelchairs faced an impossible challenge.

What is worse they had moved the disabled loo from somewhere with easy access to that location!

Oh well, the conference itself was brilliant, I went up there to hear Steve Silbermann of Neurotribes fame and it was also interesting to hear my PGCert supervisor (Luke Beardon) talking to a non-student audience.

A conference organised by autistics for autistics, brilliant.

As for flappause (google it), is there anything cooler?

Left 4:30pm, home 1:30am, shattered, crashed into bed

Tue 28-May-2019

Awake 8:30am and took it easy for the rest of the day, except in the evening we needed to move the buggy from my car to Teresa’s, that exhausted me.

Wed 29-May-2019

Blood test 8am and then into Truro to meet ex-wife (#2) we still keep in touch, as much to talk about the children, but I like the fact that divorce doesn’t have to leave a bad taste.

Got home exhausted and crashed for the rest of the day

Thu 30-May-2019

Phew got some work done

Fri 31-May-2019

Venesection at 9am, particularly affected me and indeed after I’d had my BP meds in the evening, I was not safe standing up due to low blood pressure – not surprising having had a pint of blood taken out.

Otherwise just an exhausted day.

Postscript

So, last week just disappeared. The diarrhoea is a long way from being gone but it is more manageable nowadays, I think we may have a handle on its worst excesses, keep monitoring.

This was an intense period:

  • Fri 24th May CT scan
  • Sun/Mon Conference
  • Wed 29th May Blood Test
  • Fri 31st May venesection
  • Tue 4th May drive to work. Why does this matter? Because on the way I need to fill up Angelique’s tank. This is what I had done on the way to work that fateful day and I still get a powerful emotional jolt when I have to do it – I usually try VERY hard to avoid it but at 1:15am last Tuesday on our way home from Manchester I just didn’t have the energy to stop and start again and she is running on fumes.
  • Wed 5th June, scan results, can’t be stressful, can it? All the abdominal pain of late “must” have a non cancer explanation? Hope won’t make it true, fear won’t make it false. It will be what it will be, but it remains stressful
  • … Now we know, panic or momentary relief?

The Bean, Pendeen, 03-Jun-2019

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