Letter from the North

Warwick, Part 2, a row from hell 27-Jul-2019

Remember last week? I had to turf them off the bed to get into it, this is what I found when I woke up, my legs pinned in place!

Sorry this is late, but at least it is on the heels of Warwick, Part1. Hard to write, difficult stuff in here, for me, Teresa and you.

Sat 27-Jul-2019

When we got back to the van late Friday evening, after the concert, it was raining, something that is one of my big worries for festivals, especially with our new arrangements and the awning/tent not connected to the van, so if it rains you have to go out in the rain for the loo, to get washed, dressed, …

We got the buggy into its cover with some difficulty, Teresa’s spatial awareness is poor on a good day, at night, in the rain, useless and I got annoyed as I was getting wet and was VERY tired – no nap in the afternoon and all those people does that to me. Teresa didn’t enjoy me getting annoyed (why should she?) and had been tetchy all day, getting worse as the day went on.

Once we were in bed, I asked her why she had been increasingly “snappy” all day.

After denying it, she told me that she didn’t want to say but felt it was me that had been unreasonable and she couldn’t “stand it” (her word would be “struggling”, I know because I asked this morning as I write this).

I am paraphrasing and I KNOW she has a different version and quite rightly, I am biased, I see things from my perspective no matter how hard I try to see it from hers.

But therein lies the problem,

I know my autistic nature – the need for control and correctness, to deal in absolutes. The difficulty being with people causes me, no matter I DO want to be with them.

It’s too much for any NT to cope with, I know that, I’ve seen two wives before AND Teresa fall at that hurdle, so I mask it, I hide it, I wrap up my nature in a package that feels friendly to her and to others. I do it with everyone, that’s one of the reasons that being with people is so exhausting for me even though I want to be with them.

I went to the head steward on our arrival about the lack of disabled toilets, actually ALL the toilets were locked and moving the water, …, but I was extremely careful to make it a chat, to say I understand the pressures they were under, …, all I wanted to do was scream at them, but I didn’t, I controlled myself. Autistic me would have screamed, masking, social me was “Mx Charming” (as Teresa refers to me under those circumstances)

In my terms I lied to them, but in theirs I was a reasonable person unlike many people who’d just complain!

BUT and it is the moral of this story, sometimes it gets too much for me and I can no longer mask and hide and I need the people around me to “get it”, to realise if I’m seeming to be difficult it’s because I’m over stretched and they need to help carry the load for a while. This help is needed BEFORE I get to “breaking point” not after (when it’s just tolerating my grumpiness)

In general, I hate having to ask for help of any sort. Festivals are orders of magnitude harder because I am away from home, I have a desperate desire to control all that I can to give me enough reserves to cope with all the things I can’t control – at a festival full of people is a lot!

I can avoid a lot of the conflict between Teresa and I, if I just do everything myself (properly 🙂 ).

Thanks to the cancer, I can’t do that anymore and that causes friction. It means that it is more important for Teresa (or anyone else) to provide the help I need, how I need it and do it well. No, not all the time, but at critical times, better than usual.

Yes, that is difficult, but then being an autistic in a non-autistic world is not easy, I’m not asking for something more than I am willing to do, it’s just that if I seem “normal” people think that I’m not doing any work to seem like that so when they are asked to do some “work” it feels unreasonable to them.

It’s not, if you aren’t autistic in a neurotypical world, female in a male world, coloured in a white world, disabled in an abled world, …, you really do not understand what it takes for those who are to cope with a world that isn’t.

I may have written a few weeks ago when we went to Manchester how vulnerable I felt at a petrol station in a seedier part of town in a dress. Never occurred to Teresa because I seem so sure and confident in how I dress. Because I make it look easy doesn’t mean it IS easy to be different. Constantly having “looks” being called Mr, …, it is constant pin pricks (and sometimes brick bats).

So, yes, I was struggling that night, but what I needed was understanding and more effort NOT being snapped at, after all it was ME that tried to talk about what was happening, something autistics (and men) are supposed to be rubbish at.

In order for Teresa to help me how I need the help, I would prefer she worked it out herself, but often she can’t, she just doesn’t have the practical skills, I love her, but she is a “push it and shove it and tap keys at random until it works sort of person. I am MUCH more precise, careful, read the instructions, plan, run trials and tests in my head and practically. I am not known as “daddy one day” by my children, I am cautious and take my time to do it right and safely.

So, knowing the gulf, I hope Teresa will work out what needs to be done, but I realise I need to give her precise instructions. The trouble is Teresa and precise are just not good bedfellows and they fluster her and she gets worse.

The obvious answer is “do it yourself then Bean”, that’s what I used to do and it worked we didn’t get friction over that sort of stuff at festivals.

But since I no longer can, plan B is for it to be done “badly” (for me yes, but my feelings do matter).

I need Plan C which respects the level of difficulty I am having, more than enough for me to not go to a festival ever again and help is more helpful than usual because it’s recognised that my way isn’t wrong or bad, it’s different, harder for some yes, but it’s NOT unreasonable for me to ask for it and to get it.

If you don’t live with an autistic all of this will sound horribly unfair, unrealistic and selfish. It isn’t but I know it’s hard to believe me, that’s why I usually hide all this stuff from all of you, because you don’t understand and would (and probably do) think less of me when I try and articulate it.

Hey, ho, if you are in a relationship (parent, partner, employer) with an autistic, I hope this makes some sense, it certainly cost a lot to write it.

Please don’t think I am “slagging” Teresa “off”, far from it, she has to cope with a lot and is quite entitled to struggle. But even she is guilty of not realising how much I am struggling because I make it look easy so much of the time.

People at work always tell me how good I look. They cannot see the pain, the fatigue, the worry (about poo never mind cancer), …,

Good night from Mr Grumpy 🙂

p.s. I have let Teresa read this as it is rather intimate and she has passed this version of it as “acceptable” though I am sure she has her reservations 🙂

Sleep 2:30am Sat morning, woke 6:30am Saturday morning, including TWO loo trips :-(.

Constipation still locked solid and starting to panic, took softeners during the night, it made no difference.

I (and we) decided to leave at the end of the day so I could get near to my own toilet – or at least a service station with plenty of them when taking more serious action. That’s after 4 hours of sleep, so I suspect we won’t get far (the nearest service station is only 20 miles or so and that has decent loos, …)

One of the problems with festivals, especially when they have ONE disabled toilet is that in order to get my system moving when it fights me, I can be sat there for 15 mins or more, that’s difficult to do when you know others are waiting to use the same loo and psychologically that “blocks” activity.

It was raining all morning; indeed, I was dressed in full waterproofs working at the back of the van heating water, making tea, eating breakfast. Standing because sitting required the buggy and it was safe and dry under its cover, taking it out would have left me a wet seat for the rest of the day. When Teresa woke an hour or so later, we ended up locked in more discussion, indeed, when I was dressed and so was she, it was still raining, so we just sat in the van looking out the back door and enjoying the view.

Eventually the rain stopped and we packed the van, including everything (empty the loo, …)  it took 2hrs tops. A good result. We put the cushions in bin bags to keep them dry – everything was damp after all that rain. I dried off the solar panel and it wasn’t too bad, everything else that was wet went into bin bags. The bottom of the van (actually the bed base) always has a tarpaulin on it anyway, to keep the seats clean (and now dry too).

Anyway, all that caution worked and what should stay dry did and all the damp stuff was laid around the shed to dry off (after we got home). It would have been worse if actually raining while packing, but still it worked well.

I took the Toilet cassette via the buggy to be emptied and then went onto check that the exit would be open when we left around 12:45am Sunday morning – nope, locked at 10pm.

The advice was to find a security person when we wanted to leave – not up for that need a better option so decided would go back to the head steward’s office when we finished packing.

Once packed we went to head steward’s office and explained the problem, did so in a chatty manner like I had on arrival about the loo’s and we chatted, turns out they already had posters ready with a mobile number to ring when ready to go. Clearly my question had percolated through the system and an hour later by the time we had got to the stewards, all was sorted, with a laugh and a joke. NT world is happy! The stewards on the gate have no idea how angry I was and how much I wanted to scream at them, it wasn’t their fault, I knew that, but the problem was just as frustrating and my default brain action is to shout first, worry about who hears second. No, of course I don’t do that nowadays, but I have had to learn that (I did so during my teenage years). Not all autistics ever do which is why some of us seem very anti-social, angry, aggressive, ….

This is what is known as a meltdown and in a child would be visible, in adults we lock that down but the stress in doing so is incredible because the pressure is the same. We are not talking annoyed; we are talking white hot anger (in NT terms).I know what angry sounds like but it is the best analogy, it is not anger it is intense frustration, anger at myself, the world, very rarely the people that would be in the firing line if I did not manage it

It would be easy to misunderstand my explanation

1) I am not good with words (dyslexic and just not a language thinker)

2) My vocabulary for emotions is highly unusual and atypical, words are what they feel like not what the dictionary or common use defines them to be

3) If you’ve not lived with an autistic, it is very different to an NT person and the whole relationship thing is very different.

We watched the lunchtime concert in the main marquee for the first time (yes a sudden and total change of subject, another characteristic 🙂 )  – they had space for disabled – good, directly in line with posts holding up the marquee, not so good, central mike on stage in line with posts – so I never saw the artists on that spot – NOT so good!

Constipation continues

Evening concert, same marquee but the venue manager was someone we knew as a (different) venue manager from last year and was brilliant, sorted out a slot closer to stage and hence I could see around post. As is often the case at festivals, the stewards on the ground will often bend over backwards to look after you. Not all, but that’s just being human, but enough to be a source of pleasure. Warwick, despite my criticism of its organisation, has more than its fair share of nice stewards.

A good evening – we saw the Magpies again and the difference in sound quality was like chalk and cheese, however even they commented (on stage) that there were issues with something resonating in the sound system.

O’Hooley and Tiddow brilliant and as I posted (on Twiter I think):

Discovered @OHooleyandTidow via #GentlemanJack, saw them at Warwick with @TeresaBenison. That song was the climax to their act, but even if they hadn’t performed it, I would be a happy camper – it was a brilliant set. We would travel far (from West Cornwall) to see them again.

Concert ended 12:00, by the time we had loaded the buggy it was 12:30 ish, rang for the gate to be opened (using phone number on the poster) and told someone was already there, so off we went no probs.

Yes, we are still on the same day as when you started reading this bit!!!

Sun 28-Jul-2019

I felt very alert (relief at “escaping” I suspect) and just drove, we were going to need up with fuel eventually but I decided to stretch as far as possible until either I felt tired or the car felt thirsty. Both arrived at the same time and we stopped at Michael Wood for loo and possibly sleep. Still no loo activity and more awake so decided on fuel and keep going. Felt surprisingly awake – Teresa been asleep all the time and me listening to stories via my phone and a mini Bluetooth speaker.

Got to Sedgemoor services, well south of Bristol (and where we stopped on the way up having skipped Taunton Deane) and felt sleep might be OK. It’s 2hrs free so I set my alarm for 1.5hrs, which is often all I sleep for in one go anyway. If still tired we would pay for the night, if not, …, slept like a rock but woke 30 seconds before the alarm!

Went for a quick loo – turned into a very long one but success. Poor bottom feels bruised after all that pressure and pushing but phew

Off we go, think we were still in time limit – guess we will get a letter if not 🙁

It’s now daylight – albeit 5;30am How on earth have I driven so far on so little sleep and why do I feel fully recharged? Given how fatigue normally hits me. I know this is what happens when I drive and the fatigue catches me up and can take a week or more to discharge, so I WILL pay a price, but this is getting me home and near my own toilet and that is VERY motivating!

After discussing with Teresa, we decided to stop for breakfast at Exeter – ooops we were talking and I missed the turning.

So, plan B (I ALWAYS have at least 6 backup plans in place 🙂 ) and we stopped at Cornwall Services. I had coffee (for me to keep going) plus a ham and cheese wrap – normally a no-no as not fodmap but with current digestive problems maybe a good idea to keep things “moving”. So nice to eat normally!!!

We got home around 9am?

I did have a nap in the afternoon for 2 hours but otherwise all OK so far.

We unpacked the Van in the afternoon.

My system is still not as good as I would like, still very constipated, I got some old-fashioned Chilli Con Carne from the freezer (made and frozen before the new diet) and had that for tea – again really nice to have “proper” food. I like my fake chilli but no comparison to real deal.

An early night and crashed out.

Mon 29-Jul-2019

Lunchtime some more of that chilli, poo still on the move, firm but moving – rather nice food than drugs to help it along 🙂

As part of the accident compensation I had an appointment with a Psychologist this afternoon – only in Redruth but more driving than I would like.

It did NOT go well – this is from the Email I sent to the company that organised it:

I attended the appointment yesterday and can confirm there was indeed one step into the building.

Finding that entrance was impossible until after we left as the level of sign posting within the area was appalling. The only entrance we found required more steps to be negotiated first. It was only after we left that we worked out where we should have parked to gain direct access to the building.

However, I cannot confirm the step into the disabled loo as that was not available as it was only accessible from a consulting room being used by someone else. If we hadn’t happened to bump into someone who was using that room we would have just walked into someone else’s session. There was nobody “on reception”.

The only toilet available was up a flight of stairs.

The consulting room being used was also up a flight of stairs.

The whole reason for the appointment was the distress I have in driving since the accident. Given that I had to drive to the appointment and hence was already stressed, the lack of access was the final straw. It meant that the first half of my meeting with the Psychologist was marred by my distress at the lack of respect for my needs despite my having made my needs clear in advance.

Apparently, the Phycologist herself had not been made aware of my requirements and allocation of rooms seems to be done between the individuals using those rooms.

That was NOT the professional experience I expected.

No afternoon nap of course and we called into Sainsburys on the way home for a food shop. Why, oh why, do they let their stocks run down in the afternoon – makes shopping after lunchtime frustrating.

Got some grapes as a treat as I seem to tolerate them a bit under the new diet and my system still needs some help to avoid blocking up again.

Fish and Chips from Frasers, had gluten free batter

Again, crashed out at bed time

Tue 30-Jul-2019

Was a fine day till I bit on a chorizo stick (we bought at Gloucester services on the way up to Warwick) – felt like a bit of bone crunched against teeth. Removed couple bits of bone from mouth and popped into bin. Felt with tongue – not right rubbed finger on side of tooth OUCH!

OK emergency appointment time

I hadn’t visited our dentist for years and so we had lapsed and our reduced private patient costs due to lack of NHS dentists had been taken away from us and I could only go fully private – OUCH.

But got appointment – at full Bupa private rates – £80 – worth it

Before we left I had panic attack as I do not need even more medical interventions than I already have to cope with.

To be fair the dentist was brilliant. Saw me ½ hr after the phone call, a quick drive into Pz, Teresa dropped me off and parked.

He examined the tooth – I had lost the whole side of it – OLD fillings of amalgam inside a thin shell of tooth, god knows what they were doing back then (my childhood and young adult years.

He repaired the tooth on the spot and included that in the charge

Long term solution is a “crown”, there are other shorter-term solutions but have a risk of failure, as the cancer gets worse a problem like that could be the last straw so fix now.

Not cheap – £800 by the time all the cleaning up of teeth and fitting …, but worth it for peace of mind

Private care very nice, appointment for stage 1 is tomorrow so no waiting!!!

Wed 31-Jul-2019

Work in the morning and then dentist in the afternoon. Had lunch early and managed a bit of a nap before heading off to the dentist.

About an hour in the chair being battered and bashed. Loads of noise, pressure and water – the latter the biggest problem (for me) as I have a bad gag reflex – I gag every morning when I clean my teeth!

Still I survived and temporary crown in place to be replaced by the proper one in three weeks’ time (unless it comes in early).

A couple of fillings identified as needing doing which at “private” rates of £144 each is rather OUCH. We need to try and find a more cost-effective solution, but difficult down here as waiting lists are impossible even for “private at reduced rate”.

Oh well, onwards?

Thu 01-Aug-2019

No idea, I worked, other than that, I have no idea it was a Traumatic week

Fri 02-Aug-2019

Ditto

Postscript

Warwick was tough, because I normally “seem” to cope so well, it’s hard to realise (for me and Teresa) that I am so often near the edge, especially nowadays that it doesn’t take much to push me over the edge.

This week was further proof, the stress of the extra medical intervention (seeing the psychologist and the dentist) was just too much. I can handle the cancer treatment, it’s tough, but I cope, but this peripheral stuff is just too much and I just collapse into floods of tears.

Next week, yet more (unwelcome) interventions, to be followed in subsequent weeks of 4 different appointments to do with the cancer.

I get away VERY lightly compared to some but it remains a stressful business no matter how much I joke and smile and make little of it.

The Bean, Pendeen, 19-Aug-2019

3 Comments

  • Kate Mole

    Dear Bean,
    It all sounds very, very tough. You are facing a lot of problems on several different fronts, I can see. Communication is not always easy, even for the non-autistic. My partner and I do not always manage to say what we mean, and arguments often result. As I see it these things are unavoidable, and just have to be worked through. Which is what you are doing… Well done for managing the festival.
    Hang on in there Bean.
    Love,
    Kate.

    • Bean

      Thank you Kate, we are hanging on, it does get (somewhat) easier as you will see in later blogs (written but not yet posted). Relationships are never easy for anyone (as you say), but there is that “special sauce” that autism brings that can really get in the way of all the best intentions. Of course add on that extra special sauce of terminal cancer and …,

      Hey ho, we have another festival coming up, our last of the season, we’ll see how that goes (if we even manage to feel we should go given how stressful the last one was, you cannot just subject any relationship to increasing stress, it WILL break, on the other hand “giving up” is not an option, it’s a tightrope!).

      I write about this, very personal, stuff because we know a number of autistic/non autistic couples and it is clear that autism adds another layer of complication to the relationship that even professionals (marriage guidance, counsellors, …) are often totally unaware (ignorant?) of.

      We also know people who practice “don’t ask, don’t tell” about cancer and that doesn’t work either – for at least one of them!

      I’m wandering, and will stop, subject for another blog when the dust has settled?

      Bean

      • Kate Mole

        Dear Bean,
        Thanks for sharing it all. I am sure it helps people to have all this communicated. I’m firmly of the view that when it comes to cancer (and possibly to other illnesses and difficult situations) is NOT TO IGNORE IT. We need to find words for these things. It isn’t always easy and we don’t always get it right, but we’ve got to go on trying.
        Good luck with the next festival if you decide to do it.
        Love,
        Kate.

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