Month: August 2019

The stress continues, but it is not pitch black at the end of the tunnel 03-Aug-2019 

I am a bit behind, we’ve been away at Shrewsbury Folk Festival, there is much blog material to come, but it’s going to be a while to catch up. Still this was finished so here it is, a couple of weeks late.

Sat 03-Aug-2019 

The aftermath of our strains at Warwick, followed by a psychologist visit and then the dentist continues, if anything, things are getting worse between us 🙁 

It’s not that we don’t want to sort it, but my insistence on more “balance” is proving difficult. 

I know in the end I will have to “disconnect” to take the pressure off Teresa, but from many years (and 3 marriages) of experience I know the relief at that by my partner means any effort to change things stops. 

So here I am, I can take away the pain for her (it remains for me) but that only guarantees that next time will be worse (because, for me, nothing changed) 

It is awful, I don’t want it to be like this, Teresa doesn’t want it to be like this, but she is having to climb a mountain and has no skills or tools to help her. 

It’s not fair, as an autistic I long ago had to learn to climb the neurotypical mountain and whilst I’m not very good at it, I do have some skill and some equipment. I’ve had a whole lifetime of experience of the challenge. 

Teresa like most NT’s has neither the experience nor the skills and in reality, is sometimes unaware there is even a mountain that needs climbing. 

It would be easy without love, I’d just turn my back, but I do and I can’t, not without a fight. 

So, here we are struggling. 

Sun 04-Aug-2019 

Still struggling 

Mon 05-Aug-2019 

Still struggling but reaching a crescendo of pain 

Tue 06-Aug-2019 

I went into work but had an email from Teresa, she wanted to talk, that sounded ominous and I said so. 

… 

So, we talked, not sure it’s any better but was less fraught. 

However there seems to be some understanding that  

1) I understand that there are things I need from her that Teresa cannot and will not be able to do and I need to do them – that’s hard. 

But 

2) There are things (often mundane) that Teresa can do that just reduces my workload enough that I have room for 1) 

3) Not being good at spatial awareness/diy is not an excuse for not making an effort outside your comfort zone, just like being autistic is not an excuse for bad behaviour.  

It’s unnecessary to get into details here – but we are more than happy to share 1:1 if our experience could help anyone reading this. 

Bottom line, neither of us give in easily, Teresa is aware albeit dimly (and sometimes) of the mountain between us, she is not really skilled but is willing to at least to try and climb a few inches. That’s all I need, if she will do a few inches on her own I can help her up the next few, … 

Wed 07-Aug-2019 

Teresa is busy today doing a number of things that have fallen by the wayside (ordinary stuff but it causes me stress), including helping me decide on a wheelchair – I’ll talk about it a lot more in another blog, but in enclosed spaces (buildings of any sort) the mobility scooter is not much use, having a turning circle akin the titanic! 

Thu 08-Aug-2019 

Ordinary (for me) diarrhoea like I get once or twice a week, no big deal, Loperamide and expect things to be quiet on Friday. 

Well after much agonising, the wheelchair is ordered – the one I wanted remained the one I wanted even after Teresa had looked for alternatives and had a “preferred”. However, when I went to double check it would fit in the space in Angelique occupied by the buggy, it didn’t! So, I needed one that “folded” in some way. Finding that and electric was difficult without spending thousands. So, we ordered the one Teresa found at a reasonable price. It’s not perfect, but will do the job. 

Fri 09-Aug-2019 

Today we drove to Plymouth for a Coccyx exam as part of the accident claim 

A storm forecasted (the one that cancelled Boardmasters) meant I was worried about rain and wind building. In the end I decided to chance it and we went. No great problems except managed to lose my stick (causes some walking and standing issues. We (Teresa, I was sure it couldn’t be there) found it in Teresa’s car which already had one. Only explanation I can think is that in the panic to go to the dentist last week I grabbed my cushions from my car and disabled badge and must have grabbed the stick. We were in Teresa’s car because there’s no parking so I needed dropping off. I guess it shows the state of panic I was in that I moved a stick despite knowing I have one in her car (always) and didn’t remember 

Visit basically OK, arrived bit under hour early and parking had been reserved for us. 

Consultant was nice, had to do an exam, now the only way for him to “examine” the coccyx area is the same as a prostate exam. I have had the indignity of such an exam a few times and it is really not any fun! However, it’s not fun for the doctor either so one just relaxes and thinks of England :-). HOWEVER, the point of the exam was to see if there is inflammation in the area of the Coccyx – oh yes, I think I expressed that very clearly at the time. Desiring someone to stop hurting you whilst having their finger up your bum is a difficult situation, fortunately he stopped and did confirm – yes there was still something going on there. 

Consultant was very apologetic about the “procedure”. 

Well, at least we know that, fix is a bit unpleasant as it involves “manipulation” of the area (guess how they do that!!!!), under a local anaesthetic so hopefully not painful just uncomfortable and then they inject cortisone (a steroid) that should (may) reduce inflammation. If may require 5 or 6 injections a few months apart and even then, may not sort it. Plan B is to remove the coccyx – wow, apparently that IS a thing. However, that is surgery and requires stopping cancer meds and tumours start growing so a difficult calculation!!! 

He also wants an MRI of the area (clearer than CT scans for bone mets). I can have one in Plymouth which means a day’s travel or I can try to persuade the NHS to do it. Not optimistic on that one, but will give it a try. 

The journey home from Plymouth was OK in all that wind however we did hit a squall on the Hayle bypass that was double speed wipers and 20mph and still mighty dangerous. 

As the fodmap diet is working quite well we had decided to try and extend things by Teresa getting me some grapes and she also got an Indian box meal from Sainsburys which we had for tea today. 

Oh yes, the Fodmap diet was working, having eaten an unsafe meal, oh yes, we are full explosion territory and another Loperamide. 

Postscript 

Mixed marriages (autistic and non-autistic) are never easy there is such a gulf in understanding (which can be in either direction) add in the stress of terminal cancer and well, hard verges on impossible. 

It cannot be helped by my awareness of limited time left to live and a desire that I am not going to “wait” for things to happen in the future, I may never arrive, so I have a strong sense of urgency. 

When that’s connected to someone you love (like Teresa) having to learn “new tricks”, well, it can be explosive 🙁 . 

We still love each other a lot, it’s all there is to hold us together at times, but that’s no bloody help at all in actually sorting things, that is, unfortunately just bloody hard work and persistence for both of us. 

Yup, all that on top of dealing with the f**** cancer. 

Oh joy! 

The Bean, Pendeen, 31-Aug-2019 

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

The Eagle has landed, off to Warwick – 20-Jul-2019

Going to bed, Part 1 (see next post for what happens next)

Yes, three weeks late, sorry, this is Warwick Folk Festival Part 1, part 2 will follow shortly

Sat 20-Jul-2019

Spent the morning making permanent the electric fixes I did last weekend to get some of our dead lighting working.

Totally exhausted, nothing else got done.

Do you know what day it is today? May not mean much to you (except for the TV going bonkers over the last few days), I was 14yrs old and sleeping in a tent in the back garden listening to a radio when I heard those words, actually I was sitting around the yellow Formica table that now sits in my upstairs office, it was the “one small step” I heard in the tent.

When I was diagnosed, 21 months ago, I feared I would not make it to the 50th Anniversary. I did, so many of them did not, including 1st man.

I was given 2-3 years, hopefully that is wildly inaccurate in a good direction, but I have had optimism taken away from me because optimism means I plan for a future that I assume I’ll be there for.

Now I live for today, we make some plans for the future, but in my heart, I don’t assume I’ll be there, so if I need it today then today I do it, whether it is altogether sensible or not.

Today is a very important day for me yet the world around me seems almost indifferent to the power of the event. It was always going to be big for me, spaceflight always has been, but this anniversary is much bigger today than it ever would have been.

Our wedding anniversary will be in another 10 days, yet another of those milestones I can no longer take for granted.

I graduate from my PgCert in autism studies in November. On almost every level possible it’s pointless attending. But on one level alone, “fuck you, cancer” it’s worth trying to be there and we will. I’ve written about this before, but when I was planning to do the PgCert, I knew I may not make graduation (still may not), when I booked on for the next two years to complete the MA, I realise that the odds are against me making it, but what’s the point if I don’t try?

Whether you read it here or not, I wonder and worry every day what the point of being here tomorrow is, because if there isn’t one then why go through the treatment and the waiting?

So, I look for reasons to keep going, Teresa and my children are a powerful force, but they aren’t enough because that time will come and that’s all there is (Al Bean, my namesake and the 4th man on the moon asked “is that all there is”). So, for me, the question is, what difference do I make today?

The MA is part of that, these blogs (and their surviving my death) are. Getting your head around this is not easy. Plan B is to bury one’s head in the sand until the day arrives when burying is all there is left. I know that works for many people, it just doesn’t work for me, so I get to “think”.

Sun 21-Jul-2019

Packed Camper Van ready for Warwick – or at least the major packing – included the solar panel (it will be its first outing).

Assembled Teresa’s chipper (for prunings from the garden) for her, she is so enjoying it:

Please note she didn’t like being told to wear leggings nor a flowy skirt and have her hair up. Not Health & Safety conscious :-).

But doing that wiped me out for another day

Mon 22-Jul-2019

Knocked up a new version (version 3) of the Frittata that Teresa did that started us down this Fodmap road. I’ve now removed cheese, or at least I was going to and I did add bacon to compensate, but Teresa managed to find Lactose Free cheese (but still dairy – from Arla same people as do my milk). I find I do like familiar flavours and though the cheese is expensive (about the price of a “organic normal cheddar) it does taste “right” and when so much flavour has been denied to you, all bits are welcome.

Will have that for lunch tomorrow, my taste test nibble today says I may have over done the bacon and it’s too salty – we will see, I am VERY sensitive to too much or too little salt.

Like everything else in my life, I seem to be on a knife edge!

Emailed work about my varying Blood Pressure as there is a “risk” that I could be hit by low BP in the office and “faint”. Seemed like the right thing to do, however it does of course trigger H&S, training (for the first aiders), …, and as a result I couldn’t go in to work Tuesday morning as I usually would.

I know I did the right thing, and I realise I should have expected the reaction as well – but I didn’t. They are a good employer so I needn’t be worried but other employers could use it as a reason to not employ me (on health grounds) which would encourage “untruth’ness” which I hate.

Tue 23-Jul-2019

So, working from home today 🙂 .

Wed 24-Jul-2019

Work plus final van packing, major diarrhoea attack so needed to take loperamide – these attacks are not common nowadays so clearly the new diet works, but they remain no fun at all!

Ordinarily it wasn’t bad enough to justify loperamide, but with an 8hr drive tomorrow, better safe than sorry (boy did I live to regret that!!!)

Thu 25-Jul-2019

Up at 4:30am, Teresa at 5am and we were off at close to 6am. As always, the van looks (and feels when driving) packed to the gills! Part of the problem is that our lovely bed base (4” thick foam divided into six manageable “cushions” just takes up space. However, when stacked it makes a perfect cocoon to protect the solar panel whilst it is in the van, it just takes about 1/3 of our room for carrying stuff – the buggy makes a big dent too!

Stopped at West Cornwall services as normal. I couldn’t eat but did take the cancer drugs and got a flapjack ready to eat in an hours’ time. Cup of tea for me, no coffee for Teresa, she slept all the way to here and expects to go back to sleep again

Next stop Taunton Dean Northbound, a place we always stop. No, Tereasa still asleep, so I keep going and she wakes up some time later so we stopped at Sedgemoor Services – about ½hr up the road. Still nothing happening in the bottom department, mildly concerning but to be expected after loperamide yesterday. Keeping fluid intake up.

The forecast today for Warwick is 34 deg but right now it isn’t hot yet – was positively cold when we left home.

Lunch will be at Warwick services as usual, so cup of tea for hydration and on we go, traffic cooperating.

Arrive at Gloucester – scorching hot, had lunch and a minty tea, replaced 1/3 of the water in the tea with cold water to make it cool enough to drink – in that heat we would have been waiting for ages for it too cool down.

As usually happens Teresa bought some meat sticks, she likes from there and I got a couple of Chorizo ones – last time around we checked they are safe for me to eat (BOY, were we wrong, but not for the obvious reasons – see next week’s blog!)

And on we go, getting to Warwick shortly after 1pm (opening time), the camp site is already pretty busy, I later found out that the gates open sooner but they don’t advertise, it looks like people have worked that out!

Still we found a spot, the heat is awful and not only have they moved where the loos are, the map they supply on arrival with where the services are is wrong and the water location has moved as well – much to Teresa’s annoyance as it was further away and hence further for her to pull the water container. I cannot pull these new (smaller) ones on the buggy, rolling resistance too high with the small wheels..

Still we got everything sorted quickly, the new tent works wonders and we now use a cover for the buggy instead of putting it into the tent which makes more space in there.

There was some cloud as we put the pitch together so not so bad as last year, but still pretty tough. I keep drinking and did so the whole festival and it was certainly passing through but …

In general, I would say that we were disappointed with the organisation of the festival – not only had we had a lot of hassle over getting Teresa’s “carers” ticket, the facilities were poorer. The only disabled loo was by the main marquee – a LONG way from the field we were camped in. In general, the disabled facilities provided by the festival were poor.

Once pitched up we went off for an explore and for Teresa to have a gin. I felt I wanted something close to normal food for tea and since “Moor & Coast” were there with their Whitby Cod, that seemed like a good idea since they did gluten free batter.

Mega expensive and not a lot of fish, deeply unimpressed and felt ripped off even for festival prices.

Oh well, off to the Ceilidh house for the evening concert a Folk Opera by Mick Ryan. Rather unrehearsed and somewhat disorganised but Tereasa felt that added a bit of “folksy” feel to it.

It was a pleasant enough evening but marred for me by three things

1) We were early so they did see me and arranged somewhere for the buggy to go (why can’t they expect a certain number (we later found out they did in the main marquee, but to not do so in any other venue was poor).

However, we were put at the back of the venue – why is it that disabled people are put “out of the way”?

2) I don’t know what the sound engineer for that building was doing, but it wasn’t his job as far as I was concerned. The sound in that building remained poor all festival.

As is often the case there is an obsession with low frequencies and in that room, turning them up just caused “booming” and distortion. I would have thought that was easily remedied (and I am not completely ignorant in such things).

As it turns out, this was a festival wide problem and in totally different venues (a marquee with no walls and a building designed as a performance venue) the same problem persists. I know the mixers were up to the job so it was the people driving them and the sound equipment being used and that’s just not good enough.

Folk festivals are NOT rock festivals, loud MUST be blended with audibility – it’s all about the songs for goodness sakes.

Oh well, rant over

3) The air conditioning wasn’t working – really, they didn’t think that it might get warm on warmest day of the year? Really? I think this was down to the school not the festival, but even so, …

And so, to bed and crashed!

Many trips to the loo for a wee during the night so well hydrated, however no signs of poo, not worrying yet, losing a day is not unusual after Loperamide, but that’s usually the case when I’ve had to take two, it was only one on Wednesday.

Fri 26-Jul-2019

Rained overnight so a bit of padding in the damp for those nightly loo trips, but not too bad this morning however although I had a lie in till around 8am, for Teresa it was 10:30 before she stirred.

So, washing, coffee, general getting up stuff and then off to the festival, trying the only disabled loo on the way, more in hope than expectation, nothing doing, …

I/we (Teresa came and went) went to a lunchtime concert in the same Ceilidh house as last night, with The Magpies and Trials of Cato. Now

1) Aircon still not working!

2) Sound still rubbish – we were to see the Magpies on the last night in the main arena – that had its own sound problems (including the ubiquitous bass issues) but the difference in the intelligibility of the voices was like chalk and cheese, something was definitely not right in this venue.

Trials of Cato were excellent. We first heard them at Gower last year and liked them then too.

There was a 1hr session by a band called Skerryvore for an hour in the Ceilidh house at 6pm, they were different but fun, much louder than the other gigs and of course the “turn it up to 11” approach worked much better with them, but still – hearing the voices was a challenge.

For the first time I wore my noise cancelling headphones – they take out a lot of the low frequencies and whilst they dull the higher frequencies (voices) the voices were much clearer without all the “mud” from the lower frequencies.

For the evening we went to the Bridge House Theatre to see more acoustic acts and things change a bit

1) Disabled access even worse, you end up getting “squeezed” in and they seem somewhat surprised to see you! For an expensive public school, you’d think they would make better disabled access?

2) The sound was gentle re-enforcement and SO much better, first time you could easily hear what the artists were singing. So, it can be done! I don’t recall who were on, rather curates’ egg for me but finished off by John Kirkpatrick who has oodles of stage presence and skill.

Even more exhausted than yesterday (if that’s possible) however once back at the van things fell apart rapidly and it was well gone 2:30am before we got any sleep, more on that in next week’s blog – sorry for the cliff hanger but it all occurred after midnight and so by the rules of blog …

Postscript

I understand, most of the time folk music is unamplified and there are two sorts of amplification

1) Sound re-enforcement, adding just enough amplification so everyone can hear but retaining the acoustic nature of the performance

2) Loud for fold rock type acts

I’m fine with both (there is also a whole mire of in between too but we’ll skip over that). I’m always up for some loud exciting music, plenty of bass – go for it. My old ears require me to wear headphones to protect them, but yes.

However, I don’t know what the sound engineers were doing but they seemed to think that acoustic performances needed the bass end so loud it resonated and boomed over the audience. They also failed to ensure clarity of voices so you could make out what was being sung.

I hesitate to use the word but I have to question competence. It was the worst I have found it at Warwick this year, but not by a lot, last year they didn’t have a marquee and all the concerts are in the big hall they usually use for Ceilidhs and last year the sound in here (when it was the main venue) was as bad as this year (when it was a minor venue), and I am sure it’s not just down to the venue, after all turning down the overall volume would help almost all their issues, but the desire for “loud” seems to ingrained.

Audio matters to me – it’s my job as well as my passion and I don’t like to see (hear!) it done badly.

As for poo, oh boy we are only just getting started!

The Bean, Pendeen, 28-Jul-2019