Month: February 2019

Fatigue and poo, a rough week – 16-Feb-2019

No picture today, it’s taking the last vestiges of my energy to get this out on time, sorry. 

Sat 16-Feb-2019

Teresa went shopping, I had to stay at home and try a get a first draft to the first task for my second assignment (yeah quite a mouthful).

The washing machine died and was old enough that replacing was needed – Teresa ordered a new one

We moved her “new” (but old in terms of years) desk from Kat’s room to her freshly decorated office. Found all the bits and I worked out what was needed to reassemble it – I’d had to do some disassembly to get it up the stairs, a task I could no longer do as I lifted it on my shoulders and it was incredibly heavy and unwieldy.

Anyway, know what to do and ordered some suitable screws and nails.

Sun 17-Feb-2019

The new washing machine is due today, the old one is surrounded by mess and it’s plumbing is as odd as the rest of the house so I wanted to make sure it could be detached by the delivery people (we paid extra so they took the old one away)

Well, apart from the fact that the cold fill has a red tab and didn’t turn off that was successful. Fortunately, the installation guys had a blank they could fit so only small puddles of water (I now have such a blanking cap!).

To be fair the AO guys were brilliant, and Teresa now just needs to work out how to use it.

Mon 18-Feb-2019

Spent some time with HR manager at work discussing my next assignment (on how the autism act affects employers and employees), late home so missed my afternoon nap. Not good was exhausted by 8pm and crashed out

Tue 19-Feb-2019

CT scan at 9:20am, so up I get. All went fine, but we know that contrast knocks me out for a few days.

It did. On way to CT scan we took both Teresa and my cars in for their MOT. At 4pm we went back to collect them and for Teresa to look at new (second hand) cars as she wants to change hers.

She identified one possibility, but we will return on Thursday for test drive

The Dyson vacuum clearer died, Teresa ordered a replacement but refuses to get another Dyson since the founder moved offices to Singapore (I think), I don’t like them anyway.

Wed 20-Feb-2019

We had friends coming over for a meal this evening. I offered to make my chicken and mushroom stroganoff, I did the basic cook in the morning so that the evening was a just the final warm through. Took me about 2 hours and I was so tired I had a nap BEFORE lunch. Then lunch and another nap. Did I mention fatigue plus the side effects of contrast?

Our friends arrived and we had a lovely afternoon/evening. The stroganoff seemed to go down fine as did Teresa’s pud.

However, I do know that the stroganoff will trigger diarrhoea. Pretty sure it’s the mushrooms in it that do it.

As guests departed, yup the stroganoff had worked, mushrooms I love them, but they are one of my kryptonite foods. Took a Loperamide because I expected “more” to come 🙂 . Later around 11:30pm after I had slept for a while, oh lots more where that came! Another Loperamide, the next few days are going to be tough as my body shuts down and poo disappears 🙁

Thu 21-Feb-2019

Bit of poo, but not much, however Burlington is looking rather listless and seems to have some bladder control issues. I saw it yesterday and we booked him in to see our favourite vet on Monday, however seeing him this morning I decided to act now and by 10:45 he was at the vets.

Looks like it was a UTI as I expected and he got antibiotics injection and pain killers. By the time I got him home he seemed a lot happier

Then down into Pz for Teresa’s car testing. She seems to have decided but wants to think about it overnight. By the time we were home it was too late for my nap (second time this week) and I was shattered and early to bed!

Fri 22-Feb-2019

No poo at all, starting to become concerned (still the case on Saturday so I had some of the left over Stroganoff from Wednesday, not much, but problem SORTED 🙂 )

We had a chat about Teresa’s car, and it was clear her preference wasn’t quite right for her and what she really wanted was the same as she used to have before the current car. A quick google and I found one at a garage in Bugle and whisked her over there. It was exactly what she wanted, unfortunately it sold by the time we arrived but an identical one is due in a weeks’ time, so she has put her name down against it.

Again, I missed my afternoon nap and I am incredibly tired.

Postscript

If ever there was proof needed that I need those afternoon naps this week ticked the box, yes I can, and do, manage without it, but there is a price to be paid and I need to make sure that recovery time is arranged.

Also, there is no doubt that the CT contrast (iodine) does knock the stuffing out of me, no particular reason why it should but it does. Maybe it is the load it puts on the Kidneys to excrete it? Nobody gives me a definitive answer but there is no doubt it does – whether I’ve had a tough or an easy week makes no difference.

Fatigue, it is far and away the hardest part of my current treatment, but so long as it keeps me alive, there is no contest!

Poo, well it’s just a fact of life, like breathing, though less fun, it’s the fatigue that is so hard to cope with.

The Bean, Pendeen, 24-Feb-2019

Away day and more masking – 09-Feb-2019

Thank you Rosie – one of a set of three lovely earrings for my Birthday back in January

Sat 09-Feb-2019

I have no idea what happened today! Clearly, I made no notes, we would have packed for tomorrow, but beyond that it was research for the next assignment.

Sun 10-Feb-2019

Up to Sheffield for my autism MA “away day” on Monday. Up at 5:30am, left at 7am. Stops for loo and drinks at Cornwall Services, Exeter and Gloucester where Teresa stocked up on all sorts of goodies. We arrived at the hotel outside Chesterfield 5pm ‘ish. It wasn’t a great hotel, I was fine but Teresa – well it was just too shabby (not chic enough!)

We ate Ok in the bar and by 9pm I was crashed out, an Ok night’s sleep but the dreaded diarrhoea still struck at some point during the night.

Mon 11-Feb-2019

Left 7:30am in the morning (no breakfast) and with some wandering around trying to find the building where the car park is in a warren of streets, half of which are no entry and/or one way. We managed, got the buggy out, the building the day was in was next door so not a challenge to find!

The Away Day Experience

Not the most flattering picture of me having breakfast!

Breakfast in the students lounge area for both of us and then off went Teresa shopping and off I went in the lift to the class room.

I wrote some notes on my experience for our cohorts private FB group, but they don’t seem to be a group who likes to discuss autism, not even really the study process, so I thought I’d move it here and change any names for privacy. So, if it reads a tad odd, it wasn’t intended to be part of this blog.

This is a course on autism, and I think most of the people on the course are not autistic. I thought this would be appropriate to share with the course, but I suspect it would feel like a “passive aggressive” criticism, so it’s here as just my opinion of my experience. There will be some repetition from what you’ve seen me write before, well, repetition is good and some people from the course may read this and not have read me before (really, there are people who don’t hang on my every word, I can’t believe it 🙂 )

So, to get started, whilst there is a posh term for it, in simple terms, I have no facial recognition at all (actually I have minimal visual memory of anything, that really means at all, I can see your face 100 times and it will still not be familiar – ask my wife!

I do recognise body language which is how I recognise Teresa (my wife), my children, …, I am sufficiently familiar with them that it is easy to do. Nevertheless, I have been on a training course with Teresa who was sitting on the other side of the room, nice and still and calm, no active body language and I had to think twice as to whether I knew the person because Teresa has the same sort of wild hair and glasses!

I also don’t remember names without a lot of effort, no matter how many times I hear them repeated.

So, how did I cope?

I was in a room full of strangers who I didn’t recognise from sharing the same room with for three days on our course in London. I didn’t recognise any of them outside of the room or if they moved from where they were sitting in the room. I had no idea who they were or what they were called.

I felt VERY alone. One person had arranged to sit next to me, which was wonderful and because they then came and sat next to me, I was pretty sure they were the person who I had been talking (via messenger) to.

One other person came over and introduced themselves with their name, thank you Fred (not their real name!). I think the same person unlocked the disabled loo for me downstairs in the café area, but it could have been a total stranger, so I am sorry if I knew them and/or it was you Fred, …

It is very hard to connect to people when you cannot remember who they are if there is the slightest break in the conversation. So, a classroom where communication is intermittent is impossible. I cannot remember who I’ve spoken to or about what. It is paralysing. I tend to focus on those I’m pretty sure I know and ignore everyone else because it’s just too difficult.

Do I want it to be like that, no, I don’t, I want to get to know my fellow students, but they feel distant and unapproachable. Maybe some of them are, maybe all of them are, I have no way to know. Maybe they think I am unapproachable, that’s why I am writing this blog to try and explain.

Have you heard of masking, shy people do it to try to cover up their shyness, autistics do it 24*7 unless we are in a familiar space with people we trust to be ourselves with. The self-confidence you may see in me is me making a superhuman effort to try to communicate in a socially acceptable way – that is incredibly exhausting.

It’s not just in that group, it happens to me in ALL situations where I am not with people who know me REALLY well.

However, I find it interesting and worrying that in a room full of people who want to know more about autism, many of whom work with autistics, that as an autistic I felt completely isolated by the “experts” around me and, as far as I can tell they neither realised not wanted to do anything about it.

Maybe it’s my fault for being a fellow student believing I am equal but different; and not a patient, pupil, patient, …,

Ok, back to normal Bean blogging

We finished around 3pm and by 3:30pm we had loaded up the buggy and on our way. We drove straight to Gloucester services (stopping briefly for fuel only on the M1) I probably should have stopped sooner that Gloucester, but 2.5hrs was not unreasonable (same as on way up). However, this time I wasn’t very well hydrated and this just dehydrated me more.

Got to Gloucester around 6pm and did loo, ate a pie and drank a cup of tea (not the biggest) and I stood to rest my tired bottom.

I wasn’t sure if I’d sleep there or not but decided to push on, optimistic I could get us home!

After passing Taunton Dean I started to feel I was probably tied underneath feeling fine (classic hyper which I notice I do when I get over tired) and decided to sleep at Exeter Services, not just stop for a loo and drink break. Boom, my body agreed and I was suddenly very tired.

We got to Exeter around 9:30pm, quick loo then duvets out and slept. Me better than Teresa. Around 1:30am I work up too cold (lots of mini wake ups before of course), so, loo, cup of tea and we got moving. I drank the tea about 15 mins later when it had cooled down (in a lay by of course!)

We got home around 5am, quick drink of water, duvets out of car and crash.

Tue 12-Feb-2019

I woke around 9am and got moving, Teresa was a while longer 🙂 , but she had slept badly at the services (but better in the car after we left Exeter!)

Diarrhoea in buckets, nausea too, as for the fatigue … the price to be paid for such a mad exercise.

Biggest problem was that I had been too careful about drinking so I would not need the loo while sleeping and then on the last 3.5hr stretch to home (Cornwall Services closes at 11pm). Bad move, I was dehydrated and I think that hasn’t helped me. It’s also a stupid thing to do when have damaged kidneys!

Wed 013-Feb-2019

Diarrhoea and nausea and fatigue continue but much easier than yesterday

Fighting Windows 10 fighting Windows 7 on the same computer.

Thu 014-Feb-2019

Still fighting Windows 10 fighting Windows 7, but winning by separating them so they never see other!

No poo, then severe diarrhoea and needing Loperamide again.

Fri 15-Feb-2019

Head down and getting on with work. No poo all day, diarrhoea as I went to bed, however avoided the loperamide.

Postscript

When I was a very awkward (autistic) student at (Sheffield) University 45 years ago, I still remember mixing with the students from my classes, not all of them, but enough that even for me it was sociable.

Spin forward to today and everyone seems, to me at least, more wrapped up in themselves. Is that a function of getting older (but some of them are much younger than me) or is it just a sign of the times. I wish I understood. The people at work are friendly, we chat, often “small talk”, but we do talk and where relevant about work.

So, why am I finding it so difficult with this lot. Is it them or can I expect it with all the students studying for the MA.

If a were a true (stereotypical) autistic I would love having no contact, stick to my own world and be glad no one wants to be social with me. I am autistic but it takes all sorts and I do want to be social, but they seem to gather into little cliques and those groups are impossible for someone like me to get past. I would guess it is the same problem for the shy folks there too?

I found the same on the counselling and other adult courses I have been on, so maybe it is something about mature students. Still, if I wanted to understand autism better, I would want to talk to #actuallyautistic people whenever I can (and I do), I guess that’s just me.

Postscript 2

CT scan on Tuesday and scanxiety starts, a 2 week wait for results, it’s going to be tough!

The Bean, Pendeen, 17-Feb-2019

Lots of jobs done, good assignment results and the terror of fatal farts – 02-Feb-2019

Happy Teresa at our 2nd Xmas dinner with my Son in January (see she isn’t always scary Teresa). Note the Orientals hovering on the chair next to her waiting for their lunch!

Sat 02-Feb-2019

Sorted out my old office a bit to get some stuff back in there from the annex after its new wood burner was installed last week.

Teresa was pleased she didn’t have to convince me. Ms honest autistic said, well I knew there was a microphone and stand buried in there and I wanted to get to them 🙂 – ulterior motivation!!

Of course, I would have done it anyway, but I may not have been quite so profligate with my limited energy reserves otherwise!

Started work on fixing the sticking sash window in Teresa’s office that was stopping her doing final bit of painting.

Removed the front pieces so could check out the lower sash and then the parting beads to get at upper sash – the real sticky one.

Sanded down sides of the top sash but need much more to stop it sticking sideways. Order hand held electric plane to do a better job, Teresa will pick up tomorrow while I nap.

Exhausted

Sun 03-Feb-2019

Put new door lock on door to old office to make it easier to airlock and keep the cats out – especially as we are regularly lighting the fire in the annex to help warm it up.

Got in some wood for the fire just before lunch – I prefer then as it can mean better nap – it didn’t 🙁

Teresa got back with the plane as I woke up, so straight up and got window planed. It seemed Ok until I put the parting beads in and then jammed again – had a good look and some interference on RHS of sash with parting bead, cut off the small protrusion and sorted. Top sash now works. Put in bottom sash and beading to hold it, being careful to not to cause it to stick and yes, two moving sashes. Teresa v. grateful and me knackered.

My digestive system not altogether happy so the smell in there was awful, even with the window wide open (no sashes present) it was bad. Bless her, Teresa never complained though I did apologise profusely and continually. No point being embarrassed, killer farts are what they are!

Over the weekend I have removed the disk from four ancient laptops (XP vintage) so they can be sent to the recycling centre. The disks we will get shredded (yes, it is a thing) or I will just drive a chisel through the centre of them! Easiest way of ensuring the data in the disks is really gone unless you are the security services!

We also identified in the office sorting a load of old paperwork that needs shredding. There is so much now from my history and my company (almost closed now, taken years to shut the blasted thing down as economically as possible) so think we will find a commercial shredding company and see if they can’t do the disks too. Be worth it for the saved effort and time.

Mon 04-Feb-2019

Just work, lots of slow testing, tedious but necessary. Lunchtime sleep was a solid hour, better than of late.

First assignment results are 3pm tomorrow. I feel more nervous about them than for the scan results. That might seem odd, but the scan is just information there is precious little I can do to change what happens, other than what I am already doing. The assignment I could have screwed it up in so many ways.

The cancer just is, the assignment is a test of me and my abilities (or not).

Had Pasta plus mushroom and sweetcorn, …, oh yes, diarrhoea triggered either the mushroom or the sweetcorn or both – Loperamide needed.

Tue 05-Feb-2019

Office in Penryn, all well apart from pea soup fog all the way there and back. I just trundled along but it’s amazing how many drivers are in such a hurry they were “pushing” me to go faster than I felt safe and when they got past disappeared in the fog until they reached the next vehicle and I caught them up, not saving themselves any time at all!

Results at 3pm, they actually came in sooner, but I was asleep! Apparently, I did much better than I expected to but all I feel is stressed! Because emotions and the sense of them is separated in time for me, I realise that getting the results allowed all the worry and stress from doing the assignment to actually come to the fore, so instead of feeling “elated” I feel “depressed”.

Until we (Teresa and I) worked out this offset in emotional feelings and triggering incident (sometimes months) my emotional reaction to apparently good or mild events was disproportionately inappropriate. Now we look back to find the actual event associated with the emotions. In this case it was easy, but sometimes it is very difficult to work out and nowadays we tend to make a mental note of something that would have been expected to produce an emotional reaction and look out for when it occurs so we can join the dots.

Just one more bit in the working out how to work with autism and not fight it.

Normalish poo

Wed 06-Feb-2019

Work, tired, normal, normal

Had Pasta plus mushroom and sweetcorn again, …, yes, diarrhoea but very mild (for me) – why?

Thu 07-Feb-2019

Work, tired, normal, normal

Had a Benecol cholesterol buster at lunchtime as a test, oh yes, diarrhoea triggered even before non-pasta tea

Fri 08-Feb-2019

Visit to West Cornwall hospital for a venesection (400ml of blood drawn off). Two weeks ago, it was a flog to Treliske, this time just down the road. They hadn’t got a set of scales to weigh the blood to check the amount they took but said, don’t worry, we know what the right amount looks/feels like, we’ll take a bag full.

I wasn’t worried, it is the West Penwithian way, until recently if there was a signed for package our postman just signed for it and pushed it through the door, saving us being disturbed. We had no problem with that.

This relaxed attitude to the “rules” is one of the reasons we love living down here, west of Hale. Dreckly can be difficult, but you just have to go with the flow, it is the way it is.

Now as an autistic you’d think I would be stressed by all this rule breaking, instead I find it refreshing because it means people are more accepting of anything, including diversity, and indeed they are, also I choose to be accepting of it and that makes a lot of difference, it is imposed change and rules that I struggle with.

I was fine with the blood letting but by the time I get home I was rather tired and washed out – either from walking around the hospital lost but more likely from the blood letting, last time it hit me once I got home, not fainting but definitely woozy and no more driving.

A goodish nap and yet more flogging at work 🙁 .

Postscript

The delay between a triggering event before feeling the emotions you’d expect to happen at the same time, is one of the lessons that Teresa and I learnt the hard way, but we worked it out and it has been a life server.

It also shows that the problem with autistics is not so much that we don’t always display emotion it’s just it takes a while to make its way out :-). That’s not a universal rule or indeed typical of all autistics, but it’s one that can easily catch you out. We found me getting really angry or upset over trivial things, whereas I was actually angry/upset over big things that had happened in the past and I’d not reacted to at all. Imagine how Teresa felt when I got angry with her for some trivial thing when I was really upset over some big deal last month (which may have bene nothing to do with her) before we worked it out!

As for the assignment results, I was genuinely surprised, but apparently saying so when you get a good result is “false modesty” asking for an (emotional) “stroke”, it really is neither for me, it’s just a fact. I can’t be pleased with the result more than I passed because the next one is here and I could fail that.

It’s the same with the CT scans, it makes no difference if this one is good (or at least not bad) the next one might be bad, so how can I enjoy the good one?

Hence, I just pockle on, not getting overly excited (some people think it’s bad/sad I don’t get excited) but nether getting overly depressed (a good thing for me, especially when dealing with cancer!).

The Bean, Pendeen, 10-Feb-2019

Assignment, masking and a total lack of poo – 26-Jan-2019

It’s easy to think Teresa is a pussycat but even this picture fails to catch just how scary she looks when she is concentrating, do not upset her!

Sat 26-Jan-2019

Assignment, assignment and assignment then referencing

Sun 27-Jan-2019

Last week I posted a picture of the leftover packaging after doing one week’s supply of drugs, well a week later and another pile of packaging, I feel like a mobile chemist!

More referencing, referencing and yet more referencing,

SUBMITTED

I can re-submit all the way up to my deadline on Tuesday at 3pm, but it is good to have something in.

Mon 28-Jan-2019

Work during the day and then this evening made the final submission. That’s it, what I get is what I get.

Mentally and physically exhausted, I expect the rest of the week to be tough.

Tue 29-Jan-2019

In the office in Penryn, no problems but it was difficult getting up and I left even earlier than normal to make sure I got back in time for an early afternoon nap

Wed 30-Jan-2019

Still slogging away at work, it’s all I can do, no time to blog, not even about poo 🙁

Thu 31-Jan-2019

A brief flirtation with the phlebotomist mid-morning for yet another blood test. Not a great experience

Doesn’t do justice to the bruising

I ended up being a pin cushion as she tried to find a vein that wasn’t one of the ones used for the contrast on my CT scan or for the vampires for my blood letting – also known as a venesection. in the end I had to let her use one of my “good veins” even though she was using a butterfly (a really thin needle).

Why do I worry? The venesection and the canula used to inject the contrast for the CT scan need good sized veins as they use a decent sized needle to get good volume. I don’t want one of those damaged by a simple blood test, so I protect them, probably over paranoid. But as you can see the bruising I get from failed attempts is not pretty!

I have a venesection next week and then CT scan the week after. The CT scan is particularly tricky because they can only use my left arm as the right one won’t go above my head.

Venesection is used to treat polycythaemia which is an excess of red blood cells, in my case caused by the cancer screwing up the kidneys production of EPO (Erythropoietin) and outs in in overdrive. It’s a case of the simplest solution is the best! Low EPO is easily fixed by giving extra, high is hard to turn off so they just dilute the red blood cells, simples 🙂 .

Fri 01-Feb-2019

Still flogging away at work, still no poo reports.

Postscript

This was yet another brief blog with little discussion on poo, have no fear, normal service will be resumed as soon as possible and in the meantime be re-assured there is still plenty of excitement!

On a very different topic, I’d like to discuss ‘masking’, a common activity carried out by autistics so that those around us do not realise we are, letting us appear (within limits) to be what non-autistics would consider ‘normal.

When I went to see the haematology consultant last week, he said words to the effect “you don’t look autistic, you make eye contact and talk normally”.

I replied, “I am a good actor” and that is what ‘masking’ is, it is acting differently to who I am so it’s easier for others.

I don’t suppose anyone in that clinic would have coped if I’d hidden in a corner, not engaged with anyone and spoke in monosyllables. Why does that matter, because I need their absolute best to ensure my care is the best I can get. They are all human and with the best will in the world, they react better to a light touch with humour than how I would usually come across. Teresa often says I am an outstanding charmer when I ‘turn it on’, that is when I turn on the masking (not the charm, I am always charming 🙂 .

I have learnt that because I (not all autistics do) want to engage with the world around me, I need to manage my autistic needs so that I can relate to people in the way I would like. However, it is a tightrope, because people don’t realise how hard it is and the toll it takes on me.

I have discussed this before and it’s a price that is worthwhile for me because I like to engage. The other side is that I also need time in isolation to recover, plus I also need time to just be me which means that people used to seeing the chatty me think that I’m being off in some way when I suddenly stop and appear morose, distant, …,

Who do you think gets to see the most autistic me, yup Teresa, is there any doubt that despite all her foibles, she is also a saint? Well not really, I can’t say that, she reads this blog and I wouldn’t want her to get any more sure of her perfection than she already is 🙂 .

To be fair, in the medical world, where I need their best to ensure that we keep the cancer at bay for as long as possible, it is more important to me to ‘live’ than to be recognised as autistic. So I mask like crazy AND have Teresa with me to help smooth over the cracks.

Elsewhere in my life I am not so reasonable as I realise that my constant masking is not good for me and it doesn’t help others realise I am autistic and that autism is quite normal and healthy, just different.

As a final note “you look great” when you know you have ‘life limiting’ (terminal) cancer, is about as helpful as “you don’t look autistic”. I may look OK, but I feel crap, I just hide it well!

I know people mean well, but actually they do need to try harder to meet me on my ground don’t they?

Postscript2

I have joined the weird world of twitter as @beanbottomley, I have no idea what I am doing and only speak if I have something to say, but please finds me if you want to.

The Bean, Pendeen, 02-Feb-2019