Month: October 2019

The beginning of the end for my autism MA – 05-Oct-2019

Sat 05-Oct-2019

Hmmm, seems I cannot get to my blog at the moment, raised ticket at hosting provider and wait …

Made (usual) pesto pasta – in my case “pesto” is just basil and (garlic) oil, add chicken, add dose of Devils Powder (asafoetida and fenugreek mix) and pasta, decent amount of tabasco and gazillions of (low fat) Hellman’s. Simples!

Not everyone’s cup of tea but works for me and is Fodmap friendly. The chicken is de-boned thighs – not as dry as breast of chicken and baked in oven with garlic oil.

Why garlic oil? Well my diet precludes onion and garlic (hence using asafoetida). However, the nasty in garlic is NOT soluble in oil so garlic oil gets the flavour but not the nasty – yeah, I love garlic!

Once done, I was exhausted and that was me for the day

Later on, I was working on MA stuff – reading and listening/watching

Sun 06-Oct-2019

Hmmm, my Hosting supplier moved my Blogs and although I think they are visible, I cannot get admin access to post updates at the moment. So, it’s not me being even more slow than usual, it’s a technical glitch, which I will get sorted as soon as I can, …

Well, it turns out (support only took 36 hours to respond) that yes, they moved my domains to a new (faster?) system, but they didn’t change the name servers to the new ones they want me to use. Why? I now have to manually change it for each one – blah! I’ll try and get the next blog out tomorrow evening if I can

Got our Websites back.

Ditto on the MA stuff – it takes me a LONG time to get through course material as I have to re-read and re-watch many times before I really absorb it.

Mon 07-Oct-2019

Not sure what happened today!

Tue 08-Oct2019

Office very tired left early – this is becoming the norm and concerning.

Wed 09-Oct2019

Starting to get very stressed. My learning agreement with Sheffield Hallam University says that I get copies of presentations five days before they are given. Despite it not being written, that apparently includes weekend. Ok, but so far, I only have two out of four and no idea when or even if the missing two will appear.

Sounds like a trivial issue, but as you will see in future blogs it isn’t.

Thu 10-Oct2019

No sleep from 2am, rubbish before midnight. All about how much can I trust the people delivering the course to deliver on the learning agreement? I’ve tried trusting people too often, now I require evidence and on the basis of what I’ve seen so far, I am distressed – hence lack of sleep.

Presentations are now available but I’m still twitchy as no explanation or apology. It’s like it’s not a problem (despite the fact I made it very clear it was for me)

As an autistic, dyslexic, I really do need time to process a power point before I see it presented. I have difficulty (i.e. can’t) listen and read. Reading means I miss all the extra words in the talking. Processing the talking without a framework from the slides – I end up having to replay the recording (I am allowed to make) at home and listen to the whole lecture again, this time having read the slides – very time consuming and I can’t participate in the flow of the sessions.

So yes, it really does make a difference – hence learning agreement that says 5 days and my requirement it’s kept

Sick around tea time – heavy retching and sick bowl but just phlegm. Took anti-nausea drugs but they can “loosen” up those bowels and yup, into bed around 8am and off we go and severe diarrhoea

Perfect end to a perfect day, except it wasn’t …

Fri 11-Oct2019

About 2:30am Teresa came downstairs for some Ibuprofen. Biggles had been on the bed with me. I rolled over, Jane came on the bed and suddenly I felt wet – yup Jane was weeing on the bed – it is something she does, we think it’s because she was annoyed Biggles had been there and also, I was not laying how she wanted me to (in hindsight although she has that tendency anyway, the kidney disease affects bladder for them, …).

Anyway, I enlisted Teresa’s help and we stripped and changed the bed, duvet included. Oh, what a happy pair we were at 3am!!!

Unacceptable’ delays in diagnosing secondary breast cancer

Cancer is never cured, once it’s struck there will always be a risk it will strike again. We must remain vigilant even when “cured”. I’m fortunate in a way, I know I’m incurable I will never face that “oh no” moment (well apart from the time I was diagnosed but we all get that moment.

Postscript

The incident with Jane and wee did add to the list of concerns we had and subsequent trip to the vet confirmed it, however more on that in later blogs.

Now there are two of us with problematic kidneys, however that hasn’t happened yet in the chronology of these blogs, I’m just so far behind writing them up.

Issues with the MA are just starting to brew, at the time of writing I think “it’s all over”, we shall see.

The Bean, Pendeen, 27-Oct2019

Blasted virus and a day in Sheffield 28-Sep-2019

Sat 28-Sep-2019

At a hotel in Sheffield city centre before the intro day for the MA later today.

Not a great night for sleep, Teresa and I have different needs – I need the TV on in the background, the light from it disturbs her sleep – one of the main reasons we sleep separately now 🙁 . Eventually I put a rubbish book on audible and it sort of worked.

Course was OK but tiring, wheelchair did sterling service

Digestive track loosened up overnight and during the day and I took Loperamide before we left to keep things quiet while driving!

Left around 4pm, traffic horrendous until out of Sheffield and then fine.

Rain came and went; it always does when we leave Sheffield!

Then Gloucester – something to eat, took drugs for usual stuff and then painkillers due to muscle and joint pain from driving Teresa’s car (I know there is a risk of BP being pushed up by the anti-inflammatory, but …)

As we drove, Teresa tried to sleep and the heavens opened.

It was grim driving but OK. South of Bristol over the Avon bridge I was in lane 3 of 4 (so much traffic) and found I had slowed so much because of the rain that all the lunatics intent on aquaplaning instead of driving were flashing me to get out of way so they could drive stupid fast. Hard to see in mirrors if someone inside of me was undertaking, also mega stupid, but that’s so many drivers now – invulnerable in their little tin boxes until they kill someone (sorry then it’s the other cars fault not theirs).

So, I signalled and slowly moved over and eventually made it to the inside lane and pockled along at 45MPH. Bad all the way. Felt more tired than expected.

Stopped at Exeter and set timer for 1hr 15min, wrapped myself in a duvet, grabbed a pillow and woke up one minute early. Then quick loo and coffee and the last bit.

I have a rule when driving at night (or any other time nowadays. If I feel tired, stop, sleep, doesn’t matter how logn journey takes so long as I get there safe. So, always duvet and pillows in the car. Golden rule – one “head nod” and stop next services and sleep no discussion or debate.

Felt much better and more focussed on driving. Rain still variable, …

Got home around 1:30am and as soon as engine off I felt awful.

Got to house and asked for “sick bowl”, I managed not to but close. Checked blood pressure and through roof and so had to take some extra BP meds – caffeine plus anti-inflammatory. Need to watch that combo.

Sun 29-Sep-2019

Got up around 7:30am and just feel very tired and run down. Very nauseous so took strong anti-nausea drug, it will push my body towards constipation, but that’s OK for now.

I feel awful, I don’t understand why!!!

Teresa always tells me that I always say “I feel awful, I can’t think why” and then points out what I’ve just done – Like drive to Sheffield, a day at the University, drive home in less than 48hrs.

It’s clear that whatever virus bug hit Teresa with being sick last week is what I’ve got on top of normal exhaustion from travelling. Have spent the day sitting in my dressing gown under a duvet with the fire on!

Oh, and a LOT of sleeping

Yup the Loperamide on Saturday before we left plus Ondansetron (anti-nausea) this morning has added up and my body is on strike

Mon 30-Sep-2019

Doing a bit of work, but not a lot is going to be going on

Still very tired

Added a small amount of broccoli to my tea, just the florets, no stalks so Fodmap safe, but not to my body, seemed OK when I went to bed and normal poo, After an hour in bed, a run to the loo and “whoosh”

Tue 01-Oct2019

Hmmm, my digestive track is still somewhat wild, the nausea is back but took the non-constipatory type of anti-nausea drug (more diarrhoea causing but that’s easier to control), …

Wed 02-Oct2019

Just dragging myself through the day, work is about all I can do

Thu 03-Oct2019

Just dragging myself through the day, work is about all I can do

Fri 04-Oct2019

Teresa and I took Biggles in for 2nd Felv (Feline leukaemia) injection and microchip – he didn’t care, then onto Sainsburys where Teresa did some basic shopping and I sat with Biggles (he stayed in his basket of course). Cannot leave an animal in the car, especially when it got hot v.quickly when the sun came out

We both got home exhausted but job done and left the weekend clear

I don’t recall all the timing but there has been some low-level SHU (Sheffield Hallam University – MA Autism, Year 2) sorting out of stuff.

I need a “carer” to help me unload the wheelchair (and reload it) and get into the building in a weeks’ time when I will be driving up to SHU on my own for the first time. Teresa hates me doing this, but I’m trying to give her more time to do Teresa stuff, plus there will come a time when I cannot do the drive on my own and that’s when I will need her more. So long as I can be (semi) independent it’s a good thing.

The University provides this service for free!

Similarly sorting out parking permit (disabled for free)

The Module site went live (I think it was) today and so a lot of effort to start to absorb what is going to be happening. I have to read and reread information dozens of times to actually understand (process) it, so it’s going to be a long weekend!

Postscript

Whatever the virus was, it wiped us both out completely. Teresa was often sick, I just got nauseous and took drugs. She got tired, I got totally wiped out with fatigue, but it’s been tough for both of us. Still need to get flu jab, will sort mine out when do next blood test – which I must remember to get done!

The Bean, Pendeen, 23-Oct2019

Kidneys, Kittens, Sheffield and Cancer – 21-Sep-2019

The pic at the top of this blog is Jane, if you’ve been reading my recent face book posts you will know she was been given notice she has kidney failure – just disease rather than cancer, but incurable and fatal

Jane is very much in our thoughts as she keeps going, no matter how much you see and read about Mr Biggles

This blog follows on from one that finished with me getting into as right old state about new kitten basically ignoring me and me not being able to sleep and ending up going to sleep in my armchair with a duvet over me, …

Sat 21-Sep-2019

We were going to go to Truro this morning but didn’t want to overload my reserves before heading up to Sheffield on Friday, …

After a bad night (see last week’s blog), that was a good idea

I am in a lot of coccyx pain after sitting in chair for half the night (twice in quick succession)

Rest of the day passes in a blur of fatigue

Sun 22-Sep-2019

Continued to take it easy and rest, Sheffield at the end of the week will be tough

Mon 23-Sep-2019

Biggles slept upstairs all night, all four of our other cats were downstairs. Biggles appears in morning for a quick 10 second hello and then Teresa appears and bye, bye, Bean…

Popped into my office to do some work and in the space of around a minute

  • Daddy, daddy, I must come into your office now
  • Thank you, I must come up on your lap
  • Buzz, buzz, head butt, buzz, I love you best of all, I’ve missed you terribly
  • Jumps down
  • God your office is the most wonderful exciting place on earth, I so love it
  • OK, ready to go now

Ok, so it was 55 seconds not a minute but you get the idea!

Later, I go up to the loo.

  • Daddy, daddy, you’ve got to let me in
  • Thank you, I must come up on your lap (while you are doing what you need to do)
  • Buzz, buzz, head butt, buzz, I love you best of all, I’ve missed you terribly
  • Jumps down
  • Waits in bathroom and jumps up on loo next to sink while I do my morning ablute.
  • Fascinating I so love watching you wash and clean your teeth, it’s so exciting
  • Bye …

Get dressed and come downstairs and hello daddy, bye daddy

I’m back in my office and no sign of him

What is clear is that so long as there is anything interesting going on AND he knows where I am then I am irrelevant. Indeed often “so long as he knows where I am” is enough even if he’s asleep on the cat tower, with the other cats or even up on the bed with Teresa, …

Not quite what I wanted, but I guess it’s my role and I have to accept it, as things get less exciting maybe he will return more constantly?

So, no, not what I wanted, but apparently, I am his “security” and so long as I fulfil that role, he will do his own thing and come back to me as and when.

Like having children really, once they don’t need you, they only return when they do 🙂

Hey ho, work beckons

The dilemma, if my partner is bi-sexual, will he want sex with someone of the other gender and have an affair – The bisexuality dating dilemma.

Really!!!! If you are monogamous, you are monogamous no matter what your sexual preferences, for same sex, both sexes or hetero (whatever that is!). If you’re not, you’re not and that’s just as valid a choice (as long as you are honest)

Simples!

Hmmm, so I now get a FB advert every 7 entries in my timeline (yes, I’ve counted). Clearly, I have upset someone (or some algorithm more likely) in FB land!

11:45am, Teresa leaves the house, kitten wants into my office, loves me madly, kneading, buzzing, …, 10 mins later, he is off out again and asleep on the cat tower. I suspect he’d prefer it if I was in the sitting room, but that’s at 12:30pm, sorry Biggles, I love you dearly, but my employer expects some blood sweat and tears 🙂

Tue 24-Sep-2019

In the office in Penryn

Wed 25-Sep-2019

For lunch, every 10-14 days I make a batch of “pasta”, alternating “pesto” (just the basil) & chicken pasta and fish pasta (a Teresa invention, that I Fodmapped).

The last lot of fish pasta developed a horrible taste, so I need something different.

Teresa has found some gluten (and onion) free pork sausages – so I “invented” a sausage and chicken and tomato pasta – again a Fodmapped version of something. The original used baked beans, they are a no, but well rinsed, tinned in water chick peas, are an acceptable substitute (the water sucks out the nasties and the process of tinning makes that more effective, so, as long as you rinse well, ….

Worked well, looks like I have a plan B

Thu 26-Sep-2019

Moved wheelchair to Teresa car as we are going up in her car to Sheffield on Friday as the car park (by the hotel) has a low clearance and my van won’t fit 🙁

Fri 27-Sep-2019

We left for Sheffield around 7:20am, horrendous traffic all the way to Sheffield. Constant stationary traffic on all roads. Took us 10 hours to get there.

Parked up OK

Wheelchair needed bit of jiggling to get ready (first time it’s been used) but did sterling service.

After unpacking a quick meal in the hotel, did not eat healthy as body heading towards constipation. Even went wild and had 1st pint of beer in 6 months – Golden Sheep, appropriate for being in Yorkshire!

Then we went into town for me to not recognise anything. We found crucible theatre (opened in 1971, I was at Sheffield University from 1973-1978 and went there regularly) has been facelifted but while I recognised some of the shape the surroundings were all new to me.

Postscript

It is (for me) worthwhile updating where the whole cancer thing is:

1) I still have metastatic renal cancer, that is cancer that started on my left kidney and spread through lymph nodes all the way from the kidney to my right shoulder – which is the node the cancer was spotted in when I had an accident 2 years ago.

2) There is no cure, surgery, chemo and radiotherapy don’t work for kidney cancer unless it’s all contained in the kidney (or very close by), mine isn’t.

3) Metastatic means life limiting/terminal depending on which jargon you want to follow. In any case it WILL kill me

4) I am on a treatment that inhibits growth (and hence spread) of the cancer. Currently that is Pazopanib (a TKI for those that understand). It WILL fail, the cancer develops a way around it. I have 3 maybe 4 other drugs I can try and that’s it. All of the drugs, always fail, it’s just a matter of when – straight away, months, years if you are lucky, but they WILL fail.

5) The cancer is still there it has not shrunk or gone away – it shrank a bit in the first 6 months but since then “stable” is the watchword.

6) My life is not limited by the cancer (while it’s held in check) but by the side effects of the powerful drugs I take.

This is the bit of my life that has changed so here you go:

  • Blood pressure – the drugs push it dangerously high. I now take 1/3 of the drugs I was taking at the start. However, my BP has a habit of suddenly spiking (to dangerous levels) but a quick pill pulls it back into order. It means I check my BP twice a day, but that is no great hassle. Vigilance is the key.
  • Nausea – I’ve recently stopped taking my nausea meds and I’ve been OK. Don’t know for how long, but so far so good (edit, still not taking but nausea is getting harder to ignore)
  • Diarrhoea – drastic changes to my diet (Fodmap) have controlled this – I walk a knife edge between this and constipation, but it is manageable
  • Secondary Polycythaemia – the cancer causes my kidney to over produce Erythropoietin (EPO) that causes my bone marrow to produce an excess of red blood cells. That means my blood is too thick (risk of stroke, heart attack, …) and has too much iron. The treatment is straightforward, they take a pint of blood out (of my arm) once a month. This is a known effect of the cancer, not common, often there is too little iron not too much.
  • Last but the mostest – fatigue, whether from the cancer (some of it) or the cancer drugs (a lot of it) is the killer, I have very limited energy and physical/emotional/mental energy all come from the same very limited pot. So, I can only use one at a time – hence the wheelchair if I am at the University. It’s also why I can get more work done at home than in my company’s office which involves 1hr drive each way and driving costs energy – focus and attention are key here :-). It’s also why I rarely stray outside the house and don’t go to events in Pz anymore (or at least rarely)

7) The accident – my claim for compensation for the injuries and ongoing pain in my shoulder and coccyx continues to grind on with no signs of an end.

The Bean, Pendeen, 17-Oct-2019

Medical stuff, Mr Biggles continues being difficult 14-Sep-2019

Sat 14-Sep-2019

Getting ahead with work as I will lose a lot of time to medical stuff next week.

When Biggles is in the mood, this is his idea of joining me for an afternoon nap! He is totally relaxed, me just slowly coming around after my nap, it takes about 45 mins to an hour to come around!

Sun 15-Sep-2019

Still getting ahead with work

Mon 16-Sep-2019

Getting an MRI scan done today, early start to be there for 8am! Following is the FB update:

MRI scan of Coccyx done; wish I’d remembered to have a photo taken. Done as part of the insurance claim for that accident (2 years ago now!) it was done privately, paid for by the insurance companies. Done at the Dutchy Hospital (next to Treliske in Truro). What surprised me was that it was a mobile scanner (like the mobile mammogram scan units), basically a scanner in a container! Because a mobile, I don’t think it was full length, so because they were scanning my coccyx it meant my head hung out of the end – so not so claustrophobic. However, since I tend to close my eyes while being scanned it made little difference to me. Lying still is tedious, but was fine for all 4*4-minute scans. Tedious but painless – well apart from the pain from my coccyx because I was lying on it on a hard bed! But I’d taken some paracetamol beforehand to help. I do CT scans every three months and I am very used to them, MRI was a first for me, but apart from taking (and lying still) a lot longer, it was more pleasant because I don’t have to have contrast injected and my body doesn’t like the CT contrast.

Mr Biggles likes to eat when I do, this way he eats his own chicken and not my food!

Tue 17-Sep-2019

Quick venesection this morning. I warned the nurse their favourite spot (crook of arm) was too scarred from previous needles and only 1 juicy vein is reachable there. It was, she failed to get any blood, so 2nd best at wrist was good and juicy and a lot more of it is accessible.

BP at start rather high as is normal when venesection due and more normal at end when blood is thinner.

That’s the joy of secondary polycythaemia: thick blood because of the extra red blood cells.

Still this is one of the more fun treatments as it’s a friendly place as I am a once a month regular and not unpleasant if needles and blood don’t bother you and they don’t. And close to home

Still knocks the stuffing out of me but then everything does nowadays.

Bean

Exhausted, got a few hours of work done but nothing much

Wed 18-Sep-2019

So, no kitten all night, whatever is going on it looks, for now, pretty clear that whilst I “matter” there is just so much else, e.g. Barney especially and always Teresa, that I am not needed. May change, but for now, I can expect little contact. Teresa puts him on duvet between legs for afternoon nap and that has worked so far but I’m not expecting it to continue.

Food – yes please and “bye”

My office, yes, interesting, quick explore then OK, done, bye, …

Even treats – mmm, very nice off I go now, …

Off to the dentist this afternoon for a filling, not looking forward to pain afterwards (not mouth, back, shoulders, neck, joint and muscle pain from the chair). Actual procedure was fine. Used cushion for my lower back to see if it helps

Still exhausted afterwards

Spent all evening seeing Mr Biggles on Teresa’s lap and in the end, it got too much for me, started to do some cooking (8:30pm – when I’d normally be in bed)

Posted this on FB about 9pm

Well, it has been coming, but there’s nothing I can do, the kitten has decided that Teresa is his person and if she’s not available he’d rather be on the cat tower or with the other cats and not me. He’s made his decision and I have to accept it. It was always going to be an uphill battle, but I thought I was winning him around, but once he and Barney got together, well Barney is Teresa’s cat, he ignores anyone else, what else could the kitten do, clearly Teresa is top human. Teresa feels responsible. She can’t help how she affects cats; she just does and I hoped Mr Biggles would prove to be an exception. Silly me. Still Barney has the playmate he needed and that was part of the objective in getting the kitten, so I guess from his and Teresa’s point of view it’s a success. This post is for me more to read than anything else so PLEASE don’t offer help, suggestions or sympathy. It’s just one more part of my life that is hard for me to cope with right now.

Teresa went to bed, I finished my cooking and around 10:30pm, I was in such distress, I couldn’t face bed so just grabbed my pillow and duvet and watched the TV from my arm chair.

No sign of kitten, of course, eventually after dozing and increasing coccyx pain, I transferred to my bed by 2am ish. However, I woke at 4:30am and got up and was at work! (in my home office I hasten to add)

Thu 19-Sep-2019

Teresa out all day and at 10am Mr Biggles has read that FB post and decided that since she is out and all the other cats have gone back to bed, he might honour me with his presence:

Fri 20-Sep-2019

Work is OK, but as the day goes on, I am feeling increasing “flu like “symptoms (post viral). BP at 7pm was high again which explains it in part and I took extra BP meds

Sleep was OK till about 3am (say) when I went to loo and back to bed and mega stress/distress hit me – probably delayed from the Biggles, cancer, what is the point of my life, from earlier this week.

Gave up sleep, made cup of tea, grabbed a biscuit and pillow and duvet onto arm chair and watched the TV.

Biggles liked this idea and decided to join me, he’d ignored me in the bed – go figure. I slept. More dozed, until I got up around 6am.

Postscript

I’m sure the pics of the kitten are far more interesting than my trying to work out how this kitten lark works. It’s not logical (in a binary way) and kittens (animals in general) don’t follow easy to understand rules. I’ve studied NT’s (non-autistics) for over 60 years and whilst I will never understand them, I can often predict their behaviour. It’s quite clear that for cats I am at square one. Why does that matter – well imagine I hadn’t spent all those years learning how to “read” NT’s, imagine the stress. Of course, the stress is still there but I have learnt to tolerate it – mainly by never letting anyone get close to me (Teresa being the exception and even then, she can hurt me badly without ever realising – and vice versa I hasten to add).

Trying to integrate a kitten into my emotional life is both difficult in and of itself but also a metaphor for how hard I find non autistics. New kitten would be easy if I wasn’t bothered (as I wasn’t without Barney who was always Teresa’s and she has the knack of bonding), this one, well it’s so hard forming relationships I hoped a cat was less complicated than a human – it is, but I haven’t had 60 years of learning some rules of thumb.

What I think I am trying to say, is that I risk a lot trying to form a relationship with anything or anyone and I don’t have the natural instincts on how to do it, so I have to find some rules that are a very poor substitute. In the human relationship world, it’s made me ultra-cautious about assuming someone else feels even slightly the same way I do – and that’s acquaintances, friendships never mind romantic entanglements.

Seeing the same thing play out with Biggles highlights for me how much I do and avoid doing on the human arena, so much so that I don’t realise I’m doing it, I just don’t have anyone really close to me (apart from Teresa), others may be, but I have absolutely no way of being sure, hence I am always insecure even with friends who I am sure I am friends with, I’m never confident in that state.

So, by talking about Mr Biggles so much I am really trying to show you what is happening invisibly when I have contract with any person.

Oh well, as I finish this blog things are taking some sort of shape and I’m developing some behavioural and relationship rules that are working better for both of us, but it is REALLY hard.

Imagine an autistic child (me) in a neurotypical world, is it surprising we exhibited “bad” behaviour trying to make sense of a world that just doesn’t get that we are so different to them?

The Bean, Pendeen, 13-Oct-2019