Category: Other

Wobbly Eyes and Ear Crystals (by )

Yesterday I turned up for a physio appointment - I wasn't sure what it was for but thought it might be for my eyes which seemed weird but turned out to be right - of course reception were confused because I said physio and tried to direct me to the physio department - turns out it's under neurology and then they couldn't find my name and then found (once hyphen was sorted out) and then they asked me questions about number which I couldn't answer and felt stupid. I can say my birthday because I know the sounds but they pulled the numbers out and not the months name and I couldn't process it 🙁

To be fair I was pretty tired and struggling slightly when we arrived as I'd had to do double admin that morning. Then it was asking for house number which I also failed at though I do know my address honest! And then they asked me if I was the mobile ending in .... now I could have recited the whole number because I've worked at that and have a story that builds the numbers but I couldn't fathom weather my phone number had those numbers in at all!

So Al had to answer for me and I was already upset because it was his birthday and we were at the hospital and it was his birthday and I know I'd gotten him a card and present but I couldn't remember where they were or even exactly what they were! And he'd missed the coach for the kids school trip due to stupid traffic and so had been really upset that he'd caused the kids to miss their trip (he drove them to the first place they were supposed to be going to and met up with the school!).

But the appointment was more than fine though I seem to spend my time after appointments there leant up against walls trying not to fall down.

This was the FB update I made on my return:

And at today's hospital visit we discovered that just flicking my eyes from side to side can make me sweat and feel like I'm going to hurl! I have a pronounced eye wobble at the corners (it had a name I can't remember) so they are going with gaze instability and I have exercises to do which will make me feel sick and there is a slight possibility of a crystal dislodged in my ear - seriously - who knew we had ear crystals?

Couldn't do all the tests because oh my god dizzy-vertigo-pain! But on the plus side this is fixable! Just going to take a while. And also this is all kind of normal head bang stuff which is a relief!

The physio asked lots of questions which kind of hit the nail on the head - near misses whilst crossing the road, struggling with supermarkets, crashing into people in crowds, motion sickness in cars and whilst trying to watch films and play computer games, being uncoordinated ie the landscape is not quiet where I expect it to be.

Part of the issue is that though I can tell this is different from my chronic labrynthitis I didn't really register it as proper dizziness and feeling sick because that has been how things are a lot of the time anyway (inflamed middle ear that crops up as a side effect of the glandular fever I had in my first year at uni).

So they think it is mostly gaze instability - I assume that is to do with knocking my optics out initially in the fall? My eyes can't track thing properly and as creatures that rely on hunting this upsets our brains and mine is desperately trying to compensate which makes me really tired when I come a cross lots of information/visual stimuli. That's why reading makes me feel like I am falling, why the travelators make wobble, why railings drain my ability to walk. And worse it means you are likely not to notice things... like the damn van that all most splatted me the other day - how I could have missed it in it's enourmousness I don't know - but I did.

There is a chance of a loose crystal in my ear but they think it unlikely but we couldn't do my balance stuff because I was feeling sick (plus it hurt - I know weird! Moving your eyes shouldn't hurt).

On the grrr side it is going to take weeks/months to sort the eyes and the same then for the ears if it turns out not to all be visual. The exercises make me feel ill, they will lit take a minute a day.

On the good side - hey!!! This is fixable, treatable, sortable and no operations or drugs are involved!!! WHOOO Who!

No seriously that is amazing!

We are taking the treatment one thing at a time as I still need to be able to function as a person and if we are not careful I could end up at the hospital all the time (I HATE hospitals - really would rather not be anywhere near them - don't get me wrong I also love them for repeatedly saving my life but I do associate them with pain and loss).

Also last week I had another nurology appointment - this was the result of that (as posted on FB):

Apollogies for not letting people know how the appointment went - I was a tad tired! Basically there is a huge and positive improvement but still no end time - so still on rests etc... On the plus side most of the fatigue/brain drain appears to be part of an eye issue ie my eyes aren't focusing on things properly and there is stuff they can do about this 🙂 Physio is go a new set of treaments will begin soon, have to go back and have seizure etc... stuff looked at again even though I've not had one for a while ie since really getting to grips with the resting stuff. So tired still today that I had to be helped using the self check out, couldn't work out my money for the bus and tripped over my own feet. Also Cheltenham Costas failed at having GF savoury and I had to have cake for lunch :/

So it is all good which is why I am uber frustrated at not moving forward more quickly but I am trying to be ok with it all. Also the thing of the only things I can eat safely being cake when out is an issue as I've buggered up my sugar levels and need to sort that out too as that wont be helping ANYTHING.

Conclusion: things are improving, things have already improved pretty damn drastically but there is still a long slow path ahead and it is like picking up pieces of myself that I did not know were lost.

Missing Out (by )

Saturday night there was a reunion etc... that I really really wanted to go to. It was full of lots of the people I'd worked with at the campsite (the one where we got married). But... when I went to check up on the details it became apparent that it was going to be a giant disco type thing and I hadn't paid on time. I wasn't too worried about the payment deadline, I know they would have let me in anyway and I could have given them cash then and there because they aren't nasty people - I just might not have had a meal as they were catering etc...

However, I was still exhausted from my nuerology appointment and just with the general business of everything - I'd also been out recording poetry and doing business networking events etc... and as much as I was desperate to see everybody I just couldn't.

I couldn't because flashing, blinking, swirling lights cause my speech to slur and my coordination to go and I don't want to fall again, I don't want to hit my head again, I don't want to be slow at functioning for at least four days afterwards - potentially two weeks and though it shouldn't be - the main fear of wetting myself publically if this happens because that seems to be a thing as well.

Now I have been to events and lurked outside a lot etc.. and these days disco lights tend to either fall into gentle changing fuzzy lights which I am fine with or all singing all dancing lazer lights swishing and flashing and looking glorious - these I can not cope with.

I probably should have asked what the set up actually was but I don't like saying "I'm awkward please alter your event and make it less pretty so I can come" it feels destructive but also there is another side to it - I fear asking because then I find out if I am worth such a change to the person/people/organisation and though most venues and events managers have been fabulous - this was a social event and I found the thought of asking parralising. I could not have coped with the rejection if it had come so I did not ask.

Fatigue is a big risk factor for the seizure things so where as I probably would have risked going and spending all my time outside - I knew I was too tired plus I would have been even more tired once I got there due to travel times etc...

Another issue was cost - if I could have taken Al without it costing a whole extra ticket then I also would have gone. It is pretty much the sort of event he finds hard but he would have taken me incase of seizure, he would have been my safety net but it was too much money for that (because I'm a skin flint because I'm an artist and without Al I would be a starving artist so I just actually did not have enough money for a second ticket!).

So I am sitting here jealous and bitter, feeling increadibly sad and isolated, looking at everyones photos of them having a fab time and feeling angry at myself and the world and causality and rocks and well everything.

Shame (by )

I'm at the pub for a meeting, but there's a minor commotion from next door; I hear a glass smash and some amused voices. A regular, a well-known local in his nineties, has had too much to drink. A party is organised to walk him to his nearby home; everyone responds with good-natured smiles. "Aw, bless him."

But I am transfixed with vicarious shame. I feel horribly embarrassed for him, and my stomach churns with stress about it. I find everyone else's reactions jarring; they seem mildly jealous of him if anything, while I find his situation absolutely humiliating. If something like that happened to me - no, let me be clear: if I did that to myself and people saw - I would not be able to look those people in the eye ever again. I don't know if I'd be able to leave my house.

I have a mental model of the world, which gives me expectations about what counts as "normal" behaviour for the people and other objects in the world. When I see things happen that are consistent with my model (objects fall to the floor when released, people are happy with they are given cake, that sort of thing) it is unremarkable; things that are inconsistent attract my attention, as they indicate either that I have incomplete knowledge of the situation or a problem in my mental model. As I've built this mental model over the decades of my existence, I've checked every new thing I incorporate into it for logical inconsistency with something else, so I'm reasonably confident that it's consistent and a correct approximation to some kind of objective reality.

The majority attitude towards inebriation contradicts my mental model, but I can't just incorporate it, because it's inconsistent with other things in my model.

For instance, people are critical of flaws in others. As a child, if I made a mistake, I'd invoke the wrath of my mother. At school, if I made a slip and broke the myriad and shifting social contracts, I'd attract the attention of the bullies. In my career, if I make a mistake it will have consequences for my colleagues, the company I work for, and the users of the products I work on. If I make a mistake in my domestic duties at home, my children won't get to school / their clubs / parties they're invited to, or we won't have food for dinner; and they will be angry with me. If I make a mistake while driving, I will injure or kill myself or others. I often hear people complaining about other people who have made mistakes, even if those mistakes had no actual negative consequences; they are criticised for making mistakes as a matter of principal.

Mistakes are very easy to make; a moment's inattention can result in something important being forgotten. Slip-ups attract ridicule and disapproval.

But the way people react when somebody has deliberately made themselves into an idiot through inebriation starkly contradicts that general trend. Why is there an exemption made for this case?

I had a dream, when I was aged somewhere between eight and ten or so years old. In this dream, I'm on a huge futuristic spacecraft, of a similar scale to a cruise ship, full of passengers, watched over by a team of sinister police robots. I'm in a fancily-decorated room with little tables dotted around, with passengers sitting at them and chatting. In this room, little drinks are available, in tiny glasses the size of my little fingertip; barely a cubic centimetre each. There is something seedy about this; the drinks are handed out covertly, with much glancing around, out of sight of the police robots. I decide to try one, and the effect is instant; my point of view moves backwards slightly, and I become a third-party observer of my own actions, a passive rider in my own body as I circulate in the room and chatter with people, with this big idiot grin on my face. But the idiot grin attracts the attention of the police robots; scowling and disapproving, the corner me and shoot me with a dart gun which dispenses an antidote, meaning I am instantly myself again. But I feign innocence; I claim I was grinning because I was happy, and that their accusation that I had consumed one of the tiny glasses was unfounded, and act all offended. Even remembering that dream now, thirty years later, causes my face to flush with shame. It's taken quite a lot of bravery to publish it here. I had to build up to it in stages. What I'm ashamed of is that I had a dream in which I was affected by some kind of drug, because it acknowledges the concept of me being so affected even exists.

But far worse than my shame-by-proxy is the sense of alienation, because I'm having this strong emotional reaction that's completely absent in the people around me. It's like everyone around me is laughing and cracking jokes while eating babies. I feel like there's something terribly wrong with everyone around me (which is scary), while logic tells me that the problem is clearly with me. Which is even scarier.

I try and avoid situations where I might be reminded of this. Pubs are risky places to go, but only mildly so; there isn't a strong culture of inebriation in most of them, so I just avoid places like student bars. House parties are far riskier, and I dread being invited to them; accepting the invite may lead to pain, but refusing it means sitting at home on my own knowing what's happening anyway (well, not really knowing; my imagination instead provides a stream of worst-case scenaries), and being on my own while everyone else is having fun (in a way I find inexplicable and distressing) hardly makes a sense of alienation any better. It's worse when the party is at my house (I never hold parties, but people I live with do), because it's harder to hide from a party in my house, people will ask awkward questions if I leave, and I have this feeling like my "safe place" is being invaded; I make my way through life by, where possible, shutting all this stuff away, and it being in my own home makes that harder.

But avoiding situations where people might drink alcohol isn't enough, anyway, even if I could do it perfectly. People still talk about it around me, and thus, I am forced to confront the concept. I can think of no way to avoid it without isolating myself from all people and all mass media.

To be honest, I feel pretty angry about it all. Why do I have to hide, and be an outsider, flinching away from this concept? People around me can, just through saying a few words, hurt me. When a group of friends or colleagues organise a group social activity, I have to choose whether I'll suffer for going or suffer for not going. What's more, I've been told that if I don't go to an event I've been invited to, I'll offend the person who invited me. Apparently this is more important than the pain I'll suffer.

My attempts to tell other people how I feel have often ended badly. Responses tend to be either:

"You're weird, that freaks me out, go away"

"Whoa! That's weird. So does related concept X upset you? How about Y? Really? Hahahah! X! Y! That actually makes you feel ill from me just saying those words? X! Y! Z! This is fun!"

"How dare you criticize my actions! It's my choice what I do with my body, and your choice whether you put up with it or go elsewhere."

Most people just seem confused by it, and then seemingly forget I ever mentioned it. A few people have actually tried to avoid saying things that will upset my in my presence, which is heartwarming, but the concepts are deeply embedded in our culture and are impossible to avoid: attempting to avoid them just leaves awkward gaps, and I know what would fill those gaps. The best that can be done, I suppose, is to say what needs to be said, but without the assumption that everyone feels as the majority does, so I don't feel neglected. But that's not an easy thing to ask.

I don't want to be like this. I can't change the world, so I need to change myself, but how do I do that? It's hard to think about the underlying sense of shame, because the feeling of alienation is too painful; and it's hard to think about the feeling of alienation because the anger clouds it, and anger is such a destructive all-consuming emotion. Indeed, it's taken me years of careful reflection to even isolate the other feelings. My emotional response to exposure to inebriation was basically "Confused burst of painful negative emotions then ANGER". Pulling apart that little burst of emotions before the anger wins out has taken a lot of careful detective work, feeling a bit like a physicist deducing the presence of the Higgs Boson by looking at the trajectories of particles streaming out of a hadron collision. But now I'm aware of the shame at the root of it all, I can feel it. I just can't stop the anger coming in and clouding it.

So perhaps I can address the problem indirectly. What else gives me similar feelings of irrational shame, but without the complexities of alienation and anger on top?

One answer comes to mind: Dancing. I'm usually one of those people who professes he can't dance, and only tries to when under duress; at which point I just find an action and repeat it until whoever's forcing me to dance lets me stop. I have no enthusiasm for it, and struggle to understand why people do it.

But occasionlly, if I'm in a really good mood, listening to dancy music that I have happy associations with, I feel a faint glimmer of a strange pulse-quickening excitement that it might be nice to dance to it. The thing is, if I hold that thought, a flash of embarrassment comes and destroys it, so I need to keep it just out of mental reach. Perhaps if I could overcome that, lesser, shame, I would weaken the greater one. The problem is, I don't know how to. It's not like I'm standing there thinking "I want to dance, but don't know how to"; I mean, I want to dance in the sense that I usually feel very lonely and left out and forgotten when everyone is dancing apart from me, but my problem is that I want to want to dance, and I don't know how to want to.

What else is there that's similar? Oddly, there's something I have the anger about without the shame or alienation: and that's coffee. Around the time when Starbucks was really invading the UK I had a girlfriend who thought Starbucks was great, so I was always being dragged into them. The thing is, I don't like hot drinks at all, and I find the taste of coffee absolutely disgusting. At most, Starbucks could offer me over-priced orange juice, and I got sick of that pretty quickly. This touched a bit of a raw nerve: coffee wasn't being presented as something some people like, as an option; the ubiquitous Starbucks (and their competitors), the attitude of people towards them ("Let's meet in Starbucks", "Fill in this quiz and be rewarded with a Starbucks voucher"), and the decor and advertising all seemed to draw on an assumption that everyone liked the foul stuff, while I didn't.

And, of course, I have a massive chip on my shoulder about that from the alcohol thing. So being offered coffee, or having to go to coffee places and get coffee, gives me this little jolt of irritation. I used to just bite my tongue and repress this, but over the past few years I've decided it's probably healthier for me to let a little bit of snark loose. As a Repressed Minority Coffee Disliker, I probably shouldn't feel I have to put up with everyone assuming I don't exist; so I'm trying to actually say that I think coffee tastes awful and that I hate coffee shops when it comes up. It's cathartic, but there's a lot of pent-up bile left; this will take a while to finish... And I don't think that fixing that will do all that much to fix my anger about alcohol.

There's one more thing that I think might be related. I really like funny things; as a kid, I really liked surreal comedy, and could easily end up laughing so hard I could barely breathe. These days, I've lost that; I feel too much shame about the thought of somebody seeing me laughing like that. I've come close, but then I feel a sudden chilling fear that I'm going to irritate people or that they'll think I'm an idiot. But the difference here is that I can remember not having that fear.

If you'll permit me an aside, I've been teaching my daughter how to ride a bike. I did this by holding her upright and pushing her forward as she starts to pedal, so that she can get going on the bike and learn to balance, because she was struggling with getting started at all. I decided to hold her up and skip the getting started part, because learning to keep balancing while the bike's moving and you're already pedalling is a lot easier - but once you've got the feel for that, you know what riding a bike is supposed to feel like. So then you can learn to start, because you know what state you're aiming for when you push off. Trying to ride a bike from nothing is a lot harder, because you push on the pedal and wobble and fall over, because even if you push off right you don't know how to ride a bike so you'll fall over - so you can't tell if you're learning to push off right or not.

So while I can't imagine dancing in front of people (as opposed to going through the motions of pretending to dance, which is different), or even doing that unspeakable thing with alcohol that could never be in any way associated with me, I can actually imagine myself having a really good laugh about something hilarious. And, just like how knowing what riding a bike should feel like helped my daughter to quickly learn how to start from standing, I think that means I have a chance of being able to overcome the shame and recover that ability.

And maybe learning to deal with that shame will be transferrable, and I'll be better able to deal with other kinds of shame.

So, who is willing to help me overcome a crippling phobea that's causing me untold misery, by coming around to my place and watching Monty Python DVDs? Soft drinks only, I'm afraid.

Detentions, Dresses and meh. (by )

Jean has a lunch detention today for forgetting her PE kit yesterday. It's an automatic thing, she's stressed, I assured her we've all managed this one she reckons only we manage this sort of thing - she packed for the wrong day.

Mary is off to Funky Thursday an all change day at school and chose her own cloths, it is the new dress she was given at her birthday party. It is the third time she's worn it ie everytime it comes out of the laundary she wears it.

Me and Al are ill, we've had a week of three different little babies coming and going in the house plus the normal everyone has the late winter sniffles. Inflammation is the name of the game including joints, sinuses and for me also this always includes my inner ear and issues with my stupid thin ear tubes. Yep we have man flu and are still basically functioning, not even ill enough to be off work etc...

There is no real purpose in this post other than I wanted to write it.

Big Food and Naps (by )

Big Food Christmas left overs

Yesterday I did an hour of work and then went for my 9 am nap, this is supposed to last half an hour and is part of the new regime to make the head injury go away but... I woke up at nearly 2 pm having slept through all my alarms.

To be fair before said nap I felt awful, really fluey and afterwards I felt really good and got lots done but it was frustrating as it felt like I'd waisted the day.

I hadn't even had breakfast so I decided to treat myself and had Christmas left overs that were frozen in the freezer and made some gravy. This was my meal for the day - it was good 🙂

Alaric has made me me safe paneer for today which I can just reheat and I was actually organised enough to sort us out a family only mocktales. Al did admin, Jean worked on her Foodverse and has actually managed to get it out of the planning stage and started writing it 🙂

I finished off my Storystorm with over 100 ideas for picture books - most of them are kind of one idea and would make a series - now all I need is time to write them! I also did some poetry writing once Jean had gone to bed - she was most helpful with my storystorming and looked things up on her tablet for me. Mary did not join in this Mocktales which was the first of the year (my bad!) as it was too late which made her a bit of a grumples but Daddy flew her to bed and she was a super hero so she was happy.

So yeah kind of did everything wrong yesterday - binge slept and ate one huge meal which was most of my cal allowance instead of spreading out over the day but was actually very productive in the end - still kind of feel guilty though!

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