Canker Sores & Crapped Pants

I think I may have told you how I made I giant social faux pas? No? Well I did. I invited someone to stay at my house in November and thought it would be ok, but Dad vetoed it and I had to write a grovelling lying apology ‘Sorry we’re getting new flooring…’. The worst thing was the Dad bit. The person was a Professor we met on holiday who I got on with and talked about art too. I believe that she would not mind sleeping on our pristine sofa bed if it meant not having to rent a room in London. But Dad thinks the house is too much of a state. I promised to clear it, but he said no. He’s always said no, even when the house was not a state. I didn’t have birthday or other parties because my Dad doesn’t really like people in the house. He’s only ever let 1 of my friends stay here. My Brother used to bring home people every Friday night as a teen, and Dad was fine with it. In addition when it looked likely that my Cousin Gerard or my Brother would be living with us after their respective relationships fell apart, he quickly began to do rooms up.

Calm down Sarah, stop it, anger is not good.

Anyway, I made a faux pas. Wrote grovelling lie to sophisticated woman. Hid from e-mail fearing she’d hate me. Developed a sore in my nose*. Got my period. Had the second worse constipation of my life (the worst: I was hospitalized).  Developed a stye**. Developed Angular Chelitis***. Had diahoerrea, in my pants, then another painful, lip-biting episode on the toilet. Sty burst. Developed a boil on my chin. And now I have piles. All in 5 days. 5. Days.

Which of the 4 Horsemen of Apocalypse brought this on? Well, anxiety. Anxiety brought this on. You see, e-mail can scare me. Some of the worst episodes of my life have evolved through or been connected to, e-mail. First time I was called a cunt was in an e-mail from a chap at university I thought was my best friend. He *liked* me. Being Autistic I didn’t know. He got angry. He sent me an abusive message. I got so terrified I couldn’t be in a room with him, and I had to report him to the college. I was expecting the Professor from Russia to call me a shameful liar. A cunt in nicer words. Other anxieties: my ex-boyfriend’s sister got married – I only found out through a Facebook update. I blocked any info – didn’t want to see photos. Some got through – but he was not in them. I’ve not heard from him since March- so I got worried. He’s not in any of the family photos. And he was mates with his sister’s Wife. He’s an avid photographer, so perhaps he was behind a lens somewhere. I fucking hope so. I hope he’s ok. But I know I can’t contact him. We didn’t ‘break’ – we faded. I was the only one contacting. He had no money on his phone, didn’t e-mail. I phoned and texted into a void. When I lost my voice from November (Dysphonia), and my hearing was also bad (SSCD) – it made contact difficult. But I kept on. Until March.

So I sit here wearing a vast panty pad, with an itchy, swollen rectum, a boil, a sty, a sore IN MY NOSE, palpitations….

Here’s a video from my youth to cheer you up.

*It’s like a cold sore, and is related to them. It’s fucking painful.

**I first got it in 2004. It’s not flared up in 10 years. I shit ye not. Now the big green bastard is teaching me a lesson.

***Cuts at the edges of my mouth. Yeah, I look swell.

No Canker Sores this time.


22 Months

It’s been 22 months since my Mother died, and I’ve managed, finally, to sort through some things I found too sad to organise back then. And also some things I didn’t know I had to sort out. The conclusion: my Mum was a crafty mega-hoarder.

I have a lot of things, I don’t like change and I find it difficult to let go. Many of my possessions were ruined in a flood in 2008 and since then I’ve become a super-keeper. Since beginning to refurbish the house, I’ve gotten better. The only thing I would fight to the  death for are my old college files/books/notes. The rest of it I would get rid of… eventually. Art and sewing supplies are the worst as they don’t go off yet you can’t give scraps to charity. I am facing many fabric based choices.

I began tackling our Utility Room (again) as I saw a mouse in the Hall and decided that that was a sign from the Universe.* I found a box of my old shoes. They’re only old in date (2006-8) but they’ve never been worn. I can’t wear high heels, but I desperately wanted too and I got a fetish for them once mainstream shoe shops started doing my size (9). I must have spent most of my wages on heels. Finding them brought back some sad memories, and I’m glad that my local charity shop will be gaining from them. Man, I had good taste and those years produced some beautiful shoes. Fuck. I also found the shoes I wore to my Brother’s wedding (2002/3) which were still perfect, and have lasted longer than the marriage. Since 2002 I’ve been able to walk** and my feet have changed shape, so those shoes are going because my foot would smash them now. And because they can’t be very lucky, can they.

After finding and emptying a big box of my shoes, I discovered 4 boxes of my Mum’s. I’d cleared quite a few when she died, but finding yet more – unworn – was a bit of a shock. I found lots of other stuff bought from QVC (nail varnish, face cream…) and that is also going to charity. Once my Mum stopped working, she must have just shopped.

There has been a marked difference in my feelings going through all the *stuff*. I didn’t feel sad. Before I felt sad that she’d not lived to wear the shoes, use the cream, take the vitamins. This time I chuckled at the mass of items. And also being reminded of my Mum’s taste for the silly. I think she had 3 pairs of pink trainers. This rang nicely with my silly heels – shoes for times, and feet, that never were. So I don’t feel sad. And I don’t feel guilty for getting rid of the stuff. Mum would be more upset at the mice.

Other news: doing all this clearing has fucked up my right shoulder good and proper – the pain is keeping me awake and is barking at me as I type. I always forget that though strong, I’m flimsy.

I was discharged from ENT last week re: SSCD – if or when I want the operation (that was finally described to me) I can ask to be put back on the list. They are also sending me for speech therapy – I’ve been off the caffeine for 6 or 7 months but it’s not helped the underlying problem – my throat feels tight, I can’t produce a singing sound and my voice does disappear. Getting help for this is partly vanity. I am not beautiful, never have been – but I could always produce a good loud noise. I want my noise back. I don’t dye my hair, I don’t use wrinkle cream etc. but I do want my voice to be similar to that is was last November. I want to be able to sing a damn Christmas Carol.

*Universe or Mum – I am not a spiritual person, but I do think sometimes life gives you signs. And I don’t like to ignore things.

** In 1992 I hurt my left ankle on a charity walk, it froze and I limped until I was 22. The foot etc. did not develop and lack of walking left me with long, tiny (size A) fitting feet. I couldn’t even walk up to my local tube station – I had to be driven everywhere and ended up in A&E many times in agony. In 2002 I saw an amazing podiatrist called Ron McCulloch who ‘fixed’ my ankle. I am always in pain in that food, but it rarely goes stiff or swells. I can’t walk miles, but I can totter a bit – it’s variable. I have more problems with my hips, knees and spine re: walking.  Now my feet are a normal width though they do not bend properly and are not properly developed re: muscles/tendons, nor are my calves. My thighs on the other hand are massive.


Add another one to the list

A full report regarding my Asperger’s diagnosis came from the Maudsley. It contained a new nugget: I have ADHD.

Now this was a surprise. I knew I was being tested for it, but I’m so sedate I didn’t think anything would come of it…

…. but it has.

People have recently asked me how the Asperger’s diagnosis has impacted on me. I have said ‘Not at all’ which is true. But the ADHD diagnosis has. I feel relieved. I’ve always had certain problems that I really thought were me just being a dick. I can’t concentrate for long, but I can, sometimes. I pfaff around before settling to do things. I have to have audiobooks or DVD’s on in the background – of things I’m really familiar with – in order to get things done. I don’t function in silence. I have developed lots of coping strategies for my irratic behaviour – my inability to do things that are important until the last minute – and I know people have thought I was a jerk or a poseur for these strategies. But now I know I wasn’t taking the piss – I really needed to do those things. I still do. My ADHD diagnosis has confirmed I must put something on in the background before I start a project for the project to get done. Something I’ve been doing for over 20 years and apologising for. But now I won’t apologise – I’ll insist.

Not Slim Shady

Though I am back.

A short one this time:

Went on holiday. Part of it was on a boat. Dad got sick- had to be taken off the boat to nearest large city. We (my Aunt, Uncle and I) met up with him there, eventually.

More detail: the country was Russia, the boat was on the longest river in Europe, the nearest largest city was 6 hours away by ambulance, it was St.Petersburg.

A short review of Moscow/St. Petersburg from a Disabled point of view:

Moscow. It’s fucking huge, the buildings are enormous, so high. The pavements are high. There are lots of steps, few lifts, no ramps. Nearly the whole city was dug up: Summer is when they fix things. Winter is snow.  However – what they lack in lifts and ramps they make up for in people. Russia throws people at a problem. All the sites, the tourist places employ lots and lots of people. No ramp: they carry wheelchairs with people in them up the stairs. If you are a bit wonky, not in a chair or not obviously mentally impaired, you’re on your own. Don’t even bother with the Metro. I was over joyed to see large groups of Disabled people out with carers. They were every where – all the sites. And lots of carers. Russians, from my limited experience, do not treat their disabled people as idiots. However – few old people, even fewer non-white people.

St.Petersburg: Fucking huge again. Different kinda huge. Both places piss on London. Since a great many of the sites were damaged in the war, many were reconstructed… but without lifts. Stairs everywhere. Not so helpful people because most of the sites are super duper busy. I mean the Hermitage is the busiest museum in the world: 20,000 people visit it every day. However the Russians are fucking proud of their heritage and want to share it. On the first Thursday of the month the Hermitage is free to Russians. Usually you pay to get in everywhere – Moscow and Petersburg. But the tickets last 2-3 days and cover several sites. They work out at less than £10 for 4 museums over 3 days. Perfect for wonkies who get tired.

Both cities are damn expensive – really really expensive. Public transport and taxis are cheap, eating out is not. You have to tip everyone because the wages are low*.


The Russians respect learning and are on the whole educated to degree level. Our tour guide on an island was a Professor of Philosophy – his summer job (they all have them) was showing ignorant foreigners around his town. His town had 4 universities. Not many people speak English. I am not surprised. They love art – the custodians of the museums are an army of learned old ladies who tell you off for everything and I fucking loved it. And once they understood that I wanted to learn about the culture, they were kind to me. Also once they saw I had a bottle of water to take pills, they were forgiving (no drinking in the galleries…. but no cafes etc.)

They put booze in their tea. But I did not see any sign of the fabled alcoholism.

They really, really believe in massage and if I had not been so stressed about my Dad being ill, I would have had one.

*A Professor who gave us lectures on the boat (working for 7 days and nights – she had to have lunch with us etc. etc.) earned less than £500. Now, that may sound a great deal, but for over 7 hours of lecturing, with notes…. that is nothing. Not compared to what the guests were paying for the holiday, and what you’d pay in London to have such lectures – £20 per person per lecture at least. We were her summer job. She was amazing, and in a later post I shall recommend her to you all.

” And all of a sudden…”

I was diagnosed with Asperger’s. That’s right, with all the other stuff, I’m on the Autistic Spectrum (ooo shiny neon).

The people at the Maudsley are smart. They give you a pre-printed letter of diagnosis with your particular type of Autism ringed and ticked, and notes about further tests written on the bottom. This is to by-pass some of the shit bureaucracy that happens in the NHS. It allows the person newly diagnosed to have proof (which helps claim benefits, convince parents and partners etc), and confirms everything for them. Many people who get the news are confused, or just uncomprehending, so the letter covers everything and has details of relevant charities etc. on the bottom.

So, apart from sending you away with a diagnostic letter, the Maudsley people are doubly clever: once they’ve decided you’re of interest, they sign you up for all sorts of tests. Hell, they even took blood. Now, the tests are optional – you are not made to have them. I have odd genetics and they want my blood and DNA – they can have it. As a female over 30 getting diagnosed, I’m quite rare – women are less diagnosed than men, and usually when young. Or that is the current case, but it’s looking like that is changing rapidly. In addition to a genetic abnormality (EDS) I also have other weird shit (random extra hole in the head that wasn’t there 10 years ago, anyone?). I’ve taken part in consultations about treatments for Scoliosis and Chronic Pain before, and am fine with helping research.

I went to this second appointment scared that I was wasting their time – that my Mum’s wish and urging for me to get checked out, and my following it through, would be bit wacky. That I’d be taking the place of someone who really needs the attention, and, if younger, could really benefit from their help – who are struggling physically and mentally, struggling to learn and survive. But I’m glad I went. Some of the questions I was asked really got me thinking properly about my situation.

So, that was Thursday.


Duck Date

So called because I really, really like the word ‘duck’.

Ah, fair readers, an update.

I am still not enjoying calligraphy: it exhausts me. But term is soon ending. My teacher is excellent, my class mates are jolly, it’s just me, being shit.

We have designed and ordered the wardrobes for the small bedroom. We have quotes for the floor of said room. Dad has to arrange to get it plastered before anything else can happen. He has not done this, but has nagged me constantly about all the things I have to do.

We have had a heatwave here in the UK. After 5 days of sweating like a biatch, and eventually stinking like a dunghill, the heat has lessened and I am left very, very sore. My joints hurt and I am a column of stiffness from the top of my head down. I am seizure-y. I am very, very stressed.

My Dad is nagging me about preparations for our holiday. Every day he mentions something I’m meant to be doing. He has driven me to hide in my bed. He never, ever remembers/ learns that stressing me out, nagging at me, makes me ill. It makes me spiral rapidly into a depressive hole. During the heat I was unable to do anything – my body just doesn’t function at high temps – and it is not my fault. But rather than acknowledge this, the man who spent those hot days sitting in a darkened room in his pants with a fan blowing cold air onto him, just treats my actions as if I choose not to do things. Yeah, I choose not to go out and see my friend’s art show, I choose to have joints that don’t work… fucking asshole.

I planted seeds about a month ago in our raised bed and they are doing very well. I fear I will miss their flowering by being absent. I will record their bounty for you all, because heck, I grew something. All the bought flowers and plants have perished – I should be miffed but I don’t really care. Shit happens, and if shit ain’t happening, you’re dead.

Time to listen to ‘I Claudius’ on BBC Radio. And practice Italic letters. Urgh.

America After The Fall

The name of the exhibition I went to at the RA was apt, as was the tone of the information boards and the whole curation – it was knowing, and it was very much about current times. It was a small but busy show, in the lesser part of the Academy buildings – the Sackler space- and focussed on non-abstract painting in 1930’s and 40’s America. The starting point was the Wall Street Crash and New Deal that saw Artists being subsidised by the state to create public works. The *star* of the show was meant to be Grant Wood’s ‘American Gothic’- a famous image of a dour man and woman standing in front of a farmhouse – an image much copied and parodied, almost as much as the ‘Mona Lisa’. For me this was not the golden image of the show – though it was very popular and used in promotional materials – there was no one stand out. Instead I was pleased to find artists I did not know, and that made connections, interesting, pleasant connections, in my head. I learned that America had it’s version of Communist Russia’s ‘Social Realism’ – not anti-Social Realism, but Capitalist Realism. In addition I learned that the US also had it’s version of Otto Dix’s sad, seedy, blasted visions of Weimar Germany. I like these types of connections. I like the buzzes and pops and sparks that happen in my head when I see them. I like, I get great pleasure, from finding artists new to me.


Grant Wood (1891-1942) – ‘American Gothic’ 1930


Paul Cadmus (1904-1999) – ‘When the Fleet Comes In’ . 1934

This image, with it’s naughty sailors and painted ladies and gents made me think of Dix.

The picture I spent most time with (I went round the show twice – it was very crowded) was actually a seemingly unremarkable image of industry ‘And the Home of the Brave’ 1931 by Charles Demuth (1883-1935):


Why? Because of an odd nostalgia. The bottom third of the painting, where the colours become pastel and the shadows disappear, reminded me of the work of  Patrick Caulfield (1936-2005) who apart from being born in my part of London, was an artist I only got to know at A’level. The Summer weather (it’s rather hot in London at the moment) always makes me think of my teenage years, and I believe that I’m thinking of them even more than usual at the moment. I dislike Summer because my body cannot cope well with heat, I have oily ‘bad’ skin which glistens in Winter,  I sweat an uncomfortable amount and worst of all, because it makes me think like a teenager. My teen Summers were spent in a room with all the windows open but the curtains closed, watching TNT and Cartoon Network. I had no friends and my parents didn’t encourage activities. I feel a little like this at the moment. I’m in the house a great deal and the only person I talk to regularly is my Dad. As you see, I have been out, but rather than breaking my funk, it seems to have added to it. I’m going to hear a talk on Queer Art (or the Queer in Art) given by someone I’ve known for 10 years, but I’m so nervous I’m fretting about my clothes like I were meeting the Queen. When you don’t socialise, you get out of practise. I need to flex my social muscles.

DACS; (c) DACS; Supplied by The Public Catalogue Foundation

Patrick Caulfield – ‘Still Life: Autumn Fashion’, 1978

I have done one absolutely positive thing: I planted seeds in my garden. I finally got round to it. I sifted the soil on the top of the large bed (it’s taken 2 weeks working at 15 minutes a time), added lots of mixed wildflower seeds, and covered with new soil. It’s very late in the year to be doing this, but let’s hope it works. One of the Hellebores gave up the ghost, but the orchids are doing well – Orchid 2 has 6 flowers out on 2 stems, one flower waiting and what seems to be a new spur. Orchid 1 has one stem, but it’s a mighty one – knobbly, difficult to train and with the air of a dragon’s penis about it.


The Business Ending

In a follow up to my last shit-filled post…

I thought the diarrhea had gone: it hadn’t. I had to take off one of my volunteering days (4 hrs) and just ‘go with the flow’. I wasn’t right until Sunday. Holy Hell did I feel bad. I still don’t know what brought it on – what I ate or didn’t that wrecked my guts, but I’ve been on cereal ever since. And I’ve started pro-biotics. I did try them years ago, but they made me ill, however this time a very knowledgable friend of mine suggested I make sure they were dairy free – and voila! my stomach feels better. My bowels are still being random, but I don’t hurt inside all the time. I don’t have a ‘dairy problem’ that I know of, but maybe my guts are more sensitive than I imagined. Me being me, my body is not being kind – you stop having cramps because of your bowels and along comes Menses. Ahhh, the Red Wedding. And what a jolly time we are having here in Bowermanland. My joints are burning – ankles and knees – I want to sleep for England, and I even managed to go to bed without putting any sanitary protection on AT ALL because I was so tired. Though this is the first time I’ve done this (another first after last weeks tube debacle) and though I believed I would be horrified, it was actually quite useful: I bleed heavily – I have anemia, I’m a big lass, I’ve always had 5-7 day periods- I’ve always been scared of just bleeding, but now I’m not as scared. 6 hours in bed (bed usually means bloodbath) and I was not a horror show. A good learning curve.

My facial cysts are still being bastards – very slow to shift at the moment, a bit of my tooth stump (one of the right upper incisors) broke off and I had to go to the dentist. It looks like I’ll have to have the roots removed. Calligraphy whupped me again – I was already exhausted after the stomach aches and cramps – so gaining upper body pain from the calligraphy was just a bonus. And I’m writing this rather than do my home work. I’m back wearing a wrist brace because my old RSI decided to come back a few weeks ago after a calligraphy class. So everything is just a snowball of little annoyances. I’ve not been to an art show in quite a while now, but on Tuesday (post dentist) I did manage to get to the late night opening of the Hunterian Museum in London, the last before it closes for 3 years for renovation. I was very pleased I managed to make it – that I made the effort. My womb and my knees didn’t want me to get there, but when I did, I saw versions of them in jars, which made me chuckle. I last went either as a student (2004) or as a trainee librarian (2007). One of the first things you’d see is an example* of a spine and hips with kyphoscoliosis. I remember when I first saw it, it made me feel awful, sick, embarrassed – my face went red- because that was me. But this time I did not feel like that at all. That is the difference between 20-something me and 36 year old me. I didn’t balk at anything that I saw that was related to me. Even when I heard other people go ‘ewww’. That is the glory of aging. That was a good reason to drag my womb to Lincoln’s Inn. A reason I had not considered.

*An actual 18th century skeleton wired together. Just a trunk, sitting there.

The Business End

A brief re-cap of certain things, just to get started.

My Mother got diagnosed with Terminal Cancer almost exactly 2 years ago. On learning this my Dad went into a frenzy and decided to re-decorate the house. Something he’d procrastinated about since 1993. When Mum died, 6 months later, she had spent her last weeks in a shitty hell hole of builders. She got to see 2 rooms an a hall painted.  2 years on, we have… 2 rooms and a hall painted. The rooms have shelves. One, the ‘Book Room’- a bed room converted to a library/tv relaxation room, is completely finished – curtains, sofabed – everything. The ‘living room’ is not. It’s curtains lie waiting to be put up, and brown paper covers the windows. We also need to get a sofa. Though he nagged me about getting the curtains, and made me very ill during that time, my Dad has been glacial about putting them up. But he has destroyed another room. I spent my Lent clearing out the smallest bedroom that had been used for 9 years as the Ultimate Storage Space, just so my Dad could go in and take the paper down etc. because that kinda thing makes him feel useful. So I’m living in a dump. A dump where you think you can put a line under something, but then a 72 year old arsehole decides to do his own thing without telling you, but thinking you’ll magically know what he’s going to do, and wants to do.

I am not well because of this. I’ve had a year or more of stress and my body is now trying to give up. It started with an increase of depression and suicidal thoughts – not getting out of bed, not eating – my hair started falling out, skin went to pot. It gained pain from my clearing and moving so much stuff in such a short time. The pain was compounded by my trying to do other things to make me happy – gardening. Now my guts have gone. I don’t have a gallbladder. I have IBS and also I’ve had pancreatitis. My stomach area is very sensitive. I do go days without eating properly because I’m too tired to cook. I’ll eat cereal. I have constant constipation and I do get really random diarrhea. Last week I spent a lot of time feeling very sore and very ‘ill’ – headachy, not wanting to eat. I really fucked myself up on Saturday  night by over-doing my calligraphy homework and staying up until 6am in a weird state of agitation, which happens when I get a second wind. Sunday I felt like something tried to kill me and went back to bed. Monday: calligraphy, Tuesday: exhaustion and pain from calligraphy – stayed in bed. Wednesday: Shit, have to return something to a shop in central London – I can’t afford not to. And I seem to have diahoerrhea too. Ok. Take pills. Get home from a particularly fucked up journey (lots of extra walking, lots of stairs up and down, and for the first time, I got on the wrong train on the Central Line that I’ve been using for almost 30 years). Cook, eat, feel sick, get the shakes and sweats. Try to vomit. Have shower. Fuck. Gut ache. The gut ache (cramps) started at 1am, and is still going. I’ve farted and pooed and taken all the pills, but now my stomach feels like a prize-fighter went to town on it. My heart rate is up and I feel groggy and just wrong. I’ve also broken out in cysts – I have cystic acne. It had calmed down, but the recent stress has just fucked everything up. One side of my mouth is just a big, plague like sore.


And the worst thing is, there’s nothing I can do about it.

I spoke to my therapist about my Dad and she said 2 things ‘You’ve got to take control and make boundaries’ and ‘Can you move out?’. My Dad doesn’t understand boundaries, and at heart believes he’s doing me a massive favour by letting me stay in my family home rent free. For this favour I have to do what he wants – clearing rooms for example (his favourite phrase is ‘He who pays the piper calls the tune’ – he pays the bills so what he says, goes). Else he’ll get nasty. He’s always gotten nasty with me, as I’ve written before. He doesn’t do the same to my healthy, successful, older brother. Can I move out? I live on £125 per week. I’m lucky to have that. Super duper lucky. Living at home causes me stress – I’d be throwing myself out the window if I had to manage my own space. I can’t lift dustbin bag.

So I’m sitting here in my nightie, with a bealing crusty lump by my mouth, an aching gut, farting and running to the toilet trying to fix whatever my gut is up to, in a house that feels like an avalanche.


A Punch to the Face, Igor

With Ehlers Danlos Syndrome and the pain I get from/ with it, sometimes something happens physically to pull me up. It feels like this:

I did a stupid thing last Friday: I watered the plants in my garden using a can – because I needed to mix fertiliser in with the water.  A week later I still cannot move my neck properly. The lifting and manoeuvring of the can did something to my left shoulder, which developed into a neck problem which woke into a hint of Torticollis and Bang! Agony. I’ve not been in so much pain and lacking in movement like this for a very. long. time.

This brought on pain everywhere else, the need for painkillers, thus a lack of bowel movements, and then a couple of migraines. I still can’t feel my left hand properly. And I still can’t move my head, or hold it straight. I’ve been doing a proper Marty Feldman as Igor this week (I have bug eyes and a hunch), and see that this might last a while.

All I want is to plant some seeds, and look after my (non-lady) garden. Bah-Humbug!


Marty Feldman as Igor in Mel Brooks’ ” Young Frankenstein”: I sing and dance like this too:  (the one on the right – though I do know the words and tune to ‘Puttin on the Ritz’ and before I lost my voice to Dysphonia, used to sing it quite a lot. I did used to sing in choirs and bands…):