Month: November 2019

Outing with the wheelchair, MA crash looms ever closer and what does LGBTQI+ mean? – 19-Oct-2019

Sorry, no photos, all this mucking around with phones means Teresa and I haven’t consolidated yet, we will, … 

Sat 19-Oct-2019 

Teresa appeared downstairs at 2am, in tears. No obvious reason, but we cannot avoid the incredible stress we are both under. It does come out, but it’s usually just us that know, to the outside world all is well. Thank goodness we can share our grief and distress with each other, I know some other families are less able to share their feelings, especially about life limiting illness, in the same way.  

I suspect the grief from Sheffield Hallam regarding the MA is the straw for both our backs at the moment. 

We went shopping in Truro, using the wheelchair – quite different from mobility scooter in terms of manoeuvrability – not perfect because shops and people don’t understand, but better. 

It was my first-time shopping since the spring (or earlier), so nice to not be a total hermit. 

One of the things I wanted to do is replace my phone – way over 5 years old and been on SIM only, long out of contract. 

We went into Carphone warehouse and I found a Samsung S40 that is only £25 contract instead of £12.50 (both figures approx.) SIM only. So, ordered one, in Coral (of course). By the time I had started the order process, Teresa decided she would too (same phone and colour – how could she not) and the assistant processed both our orders in parallel –  

Hers upgraded, old phone lost number, new phone got old number, just like it’s supposed to. 

Mine didn’t, it really didn’t, it neither changed number nor was my contract updated, this resulted in lack of sleep. Being autistic, I never handle things not going the way expected well, at the moment I am on such on edge that it only takes stupid little things to tip me over. Yes, of course it will get sorted, but I need to not have to spend the time getting it sorted! 

This is the day that I first “complained” (in a really nice way, Teresa made sure it was “nice”) about what was happening with respect to my learning agreement at SHU. 

Sun 20-Oct-2019 

Rang EE 8am sorry no contract, can’t change phone number speak to Carphone Warehouse 

Spoke to Carphone Warehouse 10am, told me they would “push through” contract change. Also told me to ring EE and as them to do a “SIM Swap”, which is the process of moving old SIM phone number to new SIM. So, I did, told them the SIM number of new SIM and that was that. What was scary is I could have told them ANY SIM number and that SIM and phone would have my number. Remember, at this stage they have no info at all about my new phone, JUST the SIM number – which was originally a PAYG SIM! 

Why the F*** couldn’t EE have done it this morning. By Monday morning it had completed. The phone responds to the new number but still thinks it has the wrong one – hey ho! 

I wrote umpteen drafts of concern about what was happening in year 2 of the autism MA, I even “slept on it”, as much as I ever sleep 

Mon 21-Oct-2019 

Final drafts of list of my concerns about the MA sent to all three tutors. 

Got replies from two talking about “investigating and thinking” 

Tue 22-Oct2019 

Decided that, from those responses I needed to be more specific and sent a much clearer Email than the first, in the hope that the course tutor would understand when they got around to reading my email. 

I was in the office today 

I was standing in reception and noticed a bruise on my right arm from below (closer to elbow) the first puncture from last week’s venesection to above (close to fingers) the last punctures on that arm – about 6” or so and covering all the outside of the arm (½ the circumference) 

I panicked! 

Eventually I realised that a blood vessel had probably re-opened, not that morning but previously and the bruise is the result.  

I rang oncology nurses just in case, probably a stupid panic but, …, they weren’t concerned but I was unsettled for the rest of the day 

A camera not really capture the effect so no photos, sorry, would have looked great 🙂  

Next week in the office, I will be doing a walkthrough (sic) of my wheel chair in the to see what problems there are. My office is a fair distance from the green room (canteen) and reception. I don’t do phones so “walk” everywhere and I am finding that by 11am I am too tired to keep going. I found in Sheffield last week that if I use the wheelchair, I have more mental energy to keep going. 

Hate it, I feel that I am “lazy” because I can walk, but … 

So, yes, any workplace should make disabled access better, but how many do – not so many based on my experiences of workplaces (e.g. Sheffield Hallam University). I am in the office some Tuesday mornings and they are looking at automatic opening doors, extra ramps by fire exits, height of facilities in the green room. 

I am not asking them too, it’s just automatic. This is the same company that has bent over backwards to be supportive of me as I deal with the consequences of the accident and the cancer. 

They really are a beacon. 

Wed 23-Oct2019 

The bruise is fading a little 

On a totally different topic, but one that is a constant source of frustration to me: 

I struggle with the whole “lets wrap all aspects of sexual and gender diversity into one term” and treat them as a homogenous collective. Often that means people talk LGBQT… but actually mean Gay/Lesbian or Trans (gender/sexual) but don’t actually understand they are two very different things!  

Anyway, there seems to be a consensus as to what the letters all mean and I found this to be quite helpful: 

L- Lesbian 

A lesbian is anyone who identifies as a woman, and is attracted to other women 

G- Gay 

Gay is relevant for anyone who identifies as a man, and is attracted to other men. Gay can also be an umbrella term for anyone who identifies as homosexual. 

B- Bisexual 

Bisexual is anyone who is attracted to both men and women, this can also encompass being Pansexual, which describes people who are attracted to people regardless of their sex or gender. While bisexuals are attracted to both men and women, pansexuals are attracted to “people” and don’t see gender or sex as a defining factor. 

T- Trans 

Trans is actually an umbrella term for those who are transsexual or transgender. Exact definitions of these terms vary, but it is generally accepted that transsexual refers to a person’s biological “sex” so is applied to those who have had, or desire gender affirmative surgery, whereas transgender is about someone’s gender, and so one can identify as either gender regardless of physicality 

Q- Queer/ Questioning 

This is also generally used in terms of gender- many people would use this term to describe themselves, including those who identify as both genders, neither gender, or parts of each. It should be noted that although the word has now been reclaimed by the queer community, “queer” used to be used as a derogatory term, and some people may still find it insensitive. 

I – Intersex 

Intersex is another umbrella term, for those who have variations in biological sex characteristics that mean they don’t fit the exact biological definition of “male” or “female”. A lot of people would argue that these terms are reductive and unnecessary anyway, and many intersex people identify as one gender or other regardless of variations. 

A- Asexual 

Asexual is when someone experiences no sexual attraction to anyone else (there are other terms for those who only feel a very small amount). Asexuality has only recently started to be discussed and understood in the mainstream press. It’s also important to understand that Asexual people can feel romantic attraction (although some don’t), the term only refers to attraction of a sexual nature. 

+ 

+ refers to any groups of people who don’t feel that they fit into any of these categories, or fit into more than one. Identity is an enormous spectrum, and everyone would really struggle to remember the acronym if it was 44536786345 letters long. 

It’s important to remember that you can’t ever really “learn” all identities and preferences, everyone is different and has their own understanding of who they are.  

Thu 24-Oct2019 

Got reply from course leader, I wasn’t happy, it was perfectly reasonable and logical and was based on their discussions with the other two members of the team and reading my emails. 

Conclusion, in broad-brush strokes, in some cases I am making a mountain out of a molehill and in others I have unreasonable expectation. 

There was no attempt to check their understanding, ask me anything, even request a face to face (the only way to truly interact with me) 

I replied and said so, so that it was clear what I “heard” even if that wasn’t what they meant (and said so, it wasn’t an accusation, it was “I don’t know if this is what you meant, but this is what I heard”) 

Fri 25-Oct2019 

Tutor doesn’t work Fridays so have to wait until Monday at the earliest, blah! 

Postscript 

The train wreck that is year 2 of the Autism MA is happenign in slow motion but it clearly happening. 

A “this is not what we meant to happen can we sit down and talk” and that should have been problem solved. But no, we can talk about autism. It’s just “talking the talk” is easy, “walking the walk”, not so much. 

I suspect I have somehow touched a raw nerve for the course tutor and the reaction is not “typical”. I’d like to believe that, but it doesn’t take much to say so, talk and move on, does it? 

I am not happy – did you guess? 

The Bean, Pendeen10Nov-2019 

My autism MA continues to unravel, Jane (my cat) is dying, a shitty week – 12-Oct-2019

The scratches in that picture of Jane where courtesy of her and 6 weeks later only just fading, that’s how slow healing is for me!

Sat 12-Oct-2019

About a week ago Teresa made me a meal that used the proverbial chicken, potato and a sauce made using cream a meal she often did pre diarrhoea challenges). I told her that I felt that there wasn’t enough of it (cream) to trigger lactose intolerant diarrhoea. Boy was I wrong, 2 tries of it and two explosions. So, I “washed” the chicken (yes, I really did) and tried an alternative, – my preferred standby – a sort of fry-up, but the potatoes just tasted odd and so I gave up on that.

Kept the Chicken for Mr Biggles (he put up with it, but he didn’t really like the 3rd hand chicken) and decided to make a curry I often make. Usually chicken I decided to try beef (minced), Teresa persuaded me lamb would be more tasty. Made my usual (mega) quantities. It was disgusting, even Teresa agreed. Straight in the bin it went.

Getting desperate now to find a meal I haven’t had for a while that I can eat and enjoy the taste.

So, I made my version of chilli con carne. It has no onion; the only garlic is the garlic oil used to brown the minced beef! It has no “beans” in it as they are all Fodmap negative, but I could have chickpeas so long as not too many, tinned in water and well rinsed. The water sucks out the non-Fodmap stuff and the canning process assists that.

Phew, it worked, I have food!

Just in time for tea on the go on my way up to Sheffield for MA, Year 2, Day 1 on Monday.

Rather trepidatious as to how the whole “learning agreement” issue will be dealt with.

Sun 13-Oct-2019

Up to Sheffield, was going to leave late afternoon, early evening and sleep on the way. But after lunch I realised that I wouldn’t sleep for my afternoon nap and so best thing was to get packed and away.

So, chilli in a thermos for tea later. Lunch and breakfasts in the fridge in the van. Duvet and pillow and away I go.

Some hassle with the Satnav – it needs careful programming as the default route to the building I’m going to Aspect House. Fails as it’s on a one-way street and the route joins after the car park and entrance!

So, I needed to give the satnav a couple of way points (Street names) to help it get it right. I had of course “walked” the route using street view dozens of times so I knew what I was doing, but ….

The Satnav can be easily programmed from my phone but needs Internet access. Fine in the house, not at the car and between the two points it forgets it’s route.

In the end I programmed it for Tibshelf (the services before Sheffield that I’m aiming for) and wrote on paper the way points so I could fix it later on.

Wasted over half an hour faffing with that.

Still away by 2:45pm ish

Excellent journey, stories from audible passed the time. Roads OK. Was mainly listening to Ice Station Zebra by Alistair Maclean – first read as a child, MANY years ago.

Stopped for cup of tea and loo at Exeter. Tea at Gloucester Services

Arrived Tibshelf around 10:30pm

Went in to pay for car park so could sleep overnight in car, saves hotel bills – not Teresa’s cup of tea but just me and I used to do that all the time travelling between Cornwall and Cambridge.

Went in – all shops closed apart from McDonald’s and they don’t have tills now, you select and pay away from the counter.

Hmmm, went outside and checked and sign says pay at restaurant, well McDonald’s a restaurant????

Slept OK but cold, forgot coat, after a loo trip in the early hours dug out my fleece and a thin blanket Teresa uses to keep her legs warm (I like it cool in the car when I drive, she doesn’t!). Took ages to warm up, but I did.

Mon 14-Oct-2019

Hmm, my Sheffield experience did not go so well.

This is a summary from an Email I sent to SHU:

Support worker arrangements ran like clockwork, they did a good job.

The building itself (Aspect Court) had a number of disabled unfriendly issues and in general there was never any one on the main desk to sort things – one of the students had to make 2 phone calls to facilities to get some loo roll organised!

  • The lifts are difficult to access in a motorised wheelchair. I had to remove the foot rests and push my knees hard against the wall to fit!
  • The gates to the car park were locked, without a key (got sorted after a while),
  • The pavement outside the building was not useable (so I had to travel along the middle of the road to get between the building and my car, some warning/ coned off access would have been nice, I was vulnerable being a wheelchair in the middle of a road with cars on it!
  • Don’t SHU have a policy of providing water points in their buildings? We couldn’t find one in Aspect Court.
  • I understand that fire doors may need stiff springs, however for those of us with weak shoulders, the doors can be very hard to open and hold open while in a wheelchair.
  • In the classroom I had to ask people in the class to open the door for me. In the loo I could manage but needed to set my chair on “fast” when half way thru the door so I could get past it before it slammed into me and the chair!  This is a problem in many places (not just SHU) but this building seemed more problematic than Charles St.
  • VERY importantly, there is no fire refuge (for when the lifts are out of action during a fire) on the 3rd floor at least). It looks like the area outside the lifts is “supposed” to be one but since it includes a staircase (also known as a chimney), I would NOT sit there waiting for rescue in case of fire!

I was ignored by the tutors with regard to the learning agreement neither the temporary or actual course leader spoke to me about it.

A few students spoke to me, most ignored me and on an autism course I would expect everyone there to be aware that initiating conversation can be more than difficult for autistics. Some places (seemingly more autism aware) have badges that say (colour coded) “Don’t talk to me”, “I don’t mind if you talk to me”, “please talk to me”. Not on this course and apparently not the policy of the autism aware tutors

Also, some students didn’t know when to stop “having their say” even if it was totally off topic. Of course, it happens, but I think it’s the tutor’s job to gently cut it short – apparently no it isn’t.

Safe to say, I did NOT have a good day

Journey home was OK, but I had messages from Teresa that Jane (who’d been to the vet) had kidney disease, fatal for cats. I only ever read messages before I left and when I stopped at Gloucester services (no using phone when driving!!!)

Jane was my 1st cat, not great news.

Had a bit (hour and a half or so) of a sleep at Gloucester services and then a quick stop at Exeter.

Tue 15-Oct-2019

Home 3:30am,

Facebook post on yesterday and particularly the fun we had today

The vampire takes a nibble!

Monday was 1st day school of the MA Autism, Year 2. In Sheffield. So, more details in the relevant blog (this one!), but drove up Sunday afternoon/evening. Drove back Mon evening/night. Got home 3:30am this morning.

As is usual I got dehydrated on the journey, I shouldn’t, but stopping every hour for the loo is just tedious, …, This may be relevant.

This afternoon (yes same day I got home) I had a venesection – they take out 1pt of blood to stop it getting too thick and sticky.

Four tries, four times needle in a vein, four times blood doesn’t flow or stops flowing. Gave up, going back in a fortnight.

They do the venesection because my blood gets too thick and sticky. The blood doesn’t flow easily because … well you see the catch 22! However, dehydration also causes thick and sticky, so even though I was sure I had re-hydrated, maybe I hadn’t

Blah, 4 puncture wounds is no fun for me or the nurse. Getting a needle in right is about “feel”, four failures makes you question your feel, tough for both of us.

Remember me worrying when my weight hit 15st 2lb and dropping? I had been holding it around 15st 3/4/5ib. This morning 14st 12lb.

Suspect the dehydration has something to say about that too.

Looks like a lot more peeing on my long car journeys, this cancer just keeps finding new indignities for me to learn to smile through.

Oh, and just to spite things, Jane (my oldest cat) has been diagnosed with renal failure (not cancer, just failure, but normally fatal all the same).

For goodness sake life, do you have to rub my noise in it

Bean

This is the letter re Jane I sent my children, dealing with the whole death issue. They have both left home now but their formative (teenage) years were spent with Jane and Burlington:

You’ve both heard from Teresa about Jane and she’s tried to answer your questions.

Whilst I am not recovered from travel to Sheffield and yesterdays failed venesection, I am alert enough to try and explain this in my language – I will try and cover everything I can think of, so it will be the usual Dad essay!

1) Jane changed some months back (before Biggles) and started being more affectionate – I wondered why and was “suspicious”

2) When Biggles arrived, I got very worried about black poo in the litter tray and Jane had been spending days just sitting on the UPS so I asked David (our Vet) to look at her. He felt she seemed OK and didn’t do any blood tests and said “watch and wait”.

Since then, Jane has kept sitting on my lap (usually something she avoids) – because of Biggles we suspect and sleeping on the bed with me all night every night.

However, she is also currently mega sprightly and running around looking as fit as ever.

As son said when he came down, Jane is getting skinnier and whilst is not really any different to then, her fur is not the same, it doesn’t lie down nicely and sticks up in clumps – best way I can describe it is that she looks “scruffy”.

She has been eating more and more.

For different reasons Teresa and I felt it was time for David (vet) to give her a better look over.

She had a blood test done – which was actually a number of tests for all sorts of conditions that “older” cats get. He was sure it was an overactive thyroid, but it turns out to be kidney failure.

This is very common in older cats – it is often what kills them. It is incurable in cats (humans can have dialysis but cats can’t).

It is always fatal.

There are drugs that can slow it down – but how much is cat dependent.

We have no idea how long she has had this problem; how aggressive it is and hence no idea “how long”. The second blood test may indicate how fast (if at all) she is deteriorating and hence provide a better indication. We will, of course, let you know the results when we get them.

However, just like with me, nobody really knows, it will be what it will be and all we can do is cross our fingers that it’s longer rather than shorter.

That said, the moment Jane is showing signs of distress from it then we will have her put down, neither Teresa or I believe any pet should suffer just to prolong their life, not even for a day.

You will need to trust us to do the right thing if/when the time comes. If it happens, it will happen fast – ring the vet, go there and done, no time for anyone to visit. With Gus it was prob an hour from making the decision until it was over.

Yes of course we WILL tell you both but there’s nothing you can do.

Hopefully Jane will just die in her sleep, but as I said we will not permit her to suffer, so fingers crossed.

So, we have no idea how long but the best we can all hope for is months.

However, you have to understand it could happen this afternoon and we can’t give you any warning.

It’s shit, but it is the way it is.

I hate having to think about and explain this as I know it’s also my fate, but that won’t stop us taking the best care of Jane and making sure she doesn’t suffer. That’s all we can do.

Daughter, you need to be aware that whilst Burli seems OK, his fur is also starting to get that same “scruffy” look. We aren’t worried yet but you need to be aware. Jane and Burli (and Spook) are all the same age within a few months of each other.

I hope that answers any/all questions

Oh, and since son asked. Hide and Seek were buried (by me) up in the trees in Hill Row (we had a lot of space).

But just like it will be with me (and Teresa), Jane will be cremated and scattered – arranged by the vet. We will not know where. That’s how it was with Tyler, Gus and Ferret.

Oh, and son, I wasn’t here when Ferret died, I had a phone call from Teresa and the Vet while I was at work in Cambridge saying that his time had come and I agreed with his decision to put him down and that was that. So, I do understand how it feels to not be able to be there, but it’s part of how it is to have them. To prolong Ferret’s suffering for another day while I tried to get back home would be for me not him.

Not going to happen, we love our cats too much to do that to them.

Love

Dab

Given that you could almost have changed Jane to Bean, that was a TOUGH letter to write!!!

Wed 16-Oct-2019

At work

Thu 17-Oct-2019

FB posting for the day:

Bit of a general update since blogs are a long way behind reality. Jane (my cat) is eating like crazy but still all skin and bone. It will be another 2 weeks before her next blood test and we find out how bad the kidney disease is, i.e. how long she has

Yesterday I sent a long email to my two children, now left home, but who grew up with Jane (and Burlington) explaining what was happening, what happens “at the end”, that Teresa and I refuse to extend suffering by a moment for the benefit of humans so the end could happen VERY quickly, cremation …

Of course, that letter is made far more poignant as it also addresses what happens to me as the cancer advances (and advance it will), so I am also talking to them about my own death – tough, but necessary stuff and plenty of tears.

Last year on the MA I found it very hard to feel connected to almost everyone on the course, especially since we spend so much time remote from each other. I thought our FB group would be the place where we communicated. It wasn’t. I tried asking why but never got an answer that made sense.

We are studying the same subject, I feel we are all interested in the subject, but the level of engagement with others on the course seems minimal.

I had higher hopes for this year (2nd year of MA), as there are a number of different “cohorts” merging together to make up year 2.

However, it seems that I have the same problem. I have no idea why, that’s always my problem. I want to interact with others and talk about the course (in detail) but nobody else seems to want to. I don’t know if that’s just with me or with anyone. But it does leave me feeling very isolated.

Being autistic is isolating, being in a wheelchair is isolating (you’d be surprised how much), living 10hrs away from the University is isolating, dying is isolating (people don’t know how to talk to you).

Frustratingly the nicest thing that can happen for me as I navigate my “end of life” is not to feel isolated and yet I feel more isolated now than I ever did. In the past I could make the effort to reach out to others, not good at it, but I kept trying, I now need all my energy to do what I need to do and need others to reach out to me. They don’t.

Hey ho, maybe the fact that I am happy to talk about anything and am pretty blunt (straightforward) saying what I think and feel (without much of a filter) makes me scary! I know some people don’t read my blog because the cancer/dying bits are too hard for them to read, as can be the sections on poo.

Experiencing it is pretty scary too!

Oh well I can do this MA on my own, it’s just so disappointing I am going to have to as it is probably the last “thing” I will do. Maudlin, NO, honest Yes, I don’t know how to lie (even little white ones) without a lot of effort and I refuse to do that, especially now even though I know it makes others uncomfortable and probably drives them further away. Catch 22.

Digestive tract still well locked up, talk about tightropes

Getting on with work but very tired

Fri 18-Oct-2019

Still very tired,

Come to conclusion that staying on the MA is not healthy for me.

We are planning to go into Truro tomorrow for some shopping – something we haven’t done for a long time. Be the first real outing for the wheelchair.

Postscript

If I end up leaving this course, I shall be very angry.

[Update, I am leaving and I am angry 🙁 ]

The Bean, Pendeen, 03-Nov-2019