Written 26 September 2016 – not published or polished

Oh, no, not the time period in the 17th and early 18th century in Europe. The other meaning – the outlandish, fanciful and freakish. I’m not referring to myself (though I am built like a Roman Church or English Palace*) but my situation.

I’m not going to recap completely, but briefly: over years I developed chronic spinal and neck pain, frequent acute pain in my joints, a frozen left foot with limp, a twisted spine and crippling, suicidal depression and anxiety. The physical stuff ultimately derives from a genetic condition called Ehlers-Danlos Syndrome (EDS), which affects the soft connective tissue of my body – so muscle, skin, organs. Only brain and bones don’t contain collagen. I get pain easily and at higher levels than normal people, it responds badly to treatment and injuries take 50% longer to heal than normal people, if they heal at all. My diagnosis was made in 2002 when I was 21 or 22, after a car accident where a whiplash never went away. The scoliosis and depression had been in place since 1995. Because EDS is invisible to the untrained eye, and most parents, the years I spent in pain and exhausted were largely spent being ignored by Doctors, Teachers etc. I had to work extra hard to keep up with people in every way, because I was in constant pain, or depressed or just plain exhausted. I had a mental and physical breakdown in January 2002, when I was in 2nd year at Uni. I repeated the year, Graduated in 2004 and was the first person to get a job. I worked part and then full time, had another mental breakdown in 2006 having developed Non-Epileptic Seizures (NEADS) in 2005. I was put on Citalopram, which I’ve been on ever since. In 2007 my body finally gave out I was in constant pain and after the end of my then work contract, I could not find a job I could do. The Job Centre suggested I go on ESA, the new Disability Benefit. In 2010 I applied and was not awarded ESA, but found Fit For Work. I appealed, went to Tribunal, and won. I was on this benefit, in the Work Group, until 2015. During the 5 years I gradually began to work towards becoming self-employed, as my body is not able to

*Blenheim, as designed by Vanburgh/Hawksmoor


Lichfield and Codeine and Palpitations, Oh My!

Written: 26th June 2016

I have not travelled much in the UK, and near all of my travel (beyond using the Tube and being in London) happened before I was 21. In fact, I didn’t get my own adult Passport until I was 27. Travelling long distances, whether via plane, train or automobile is difficult for me. It causes me exhaustion and pain which I cannot predict. I cannot tell you how a car journey of over 35 minutes is going to affect me. Some journeys of 45 minutes leave me with a migraine, wanting to vomit and on the brink of a seizure, another journey of 90 minutes will leave me fine. It’s a travel Russian Roulette.

Last year, before my Mum was diagnosed with Cancer, my Dad saw a TV programme about Josiah Wedgwood on the BBC. He became very interested in Wedgwood and decided he wanted to visit the Wedgwood Museum in Stoke-on-Trent. But the museum, which had recently had it’s collection saved via a national campaign, was closed for a bit of re-furb and wasn’t going to open again until July. Unfortunately my Mum became ill, and though only 2 months from her diagnosis, in July she was already too ill to travel North. So when 2016 swung into action, my Dad again planned to visit Wedgwood, and finally last week we went. My Dad is 71 and I am 35. Dad has always been an excellent walker and has found my inability to keep up very annoying. His lack of understanding was a source of rancour between us. Please note the was, the past tense. As he’s aged, has become slower and has gained illnesses, he has greater understanding and sympathy. I have become better at ‘powering through’, managing my situation and communicating with him. Now we are about equal in frailty – physically. We get tired the same now, and sore. He gets Gout in his feet and knees, and since having his Gallbladder removed, understands random intestinal distress. So he literally has some glimmer of what goes on. The only element of my condition that still causes friction is the Mental Health side. He has suffered from Depression, but being unique to each person, it means he cannot understand mine. He has suffered from Anxiety and Stress – indeed he had a Stroke when he was 40, attributed to it- but again, this being unique to each person, he can’t ‘understand’ mine. But he does tolerate it. And that is better than an alternative – attacking me for it. Many people get attacked by family for their problems. That does not happen any more.

We planned our trip to Stoke-on-Trent with our frailties in our mind. And to get the most out of it. We made sure we had time – time to be leisurely. We stayed 2 nights in Stoke to make sure that we had a clean, refreshed day to go to Wedgwood.

When Not In Rome & As Through A Glass Darkly

Unfinished drafts from the vault.

Written on May 17 2016

When Not In Rome

In this case Rome is used to represent my wonky, shoddily built body and frequently frazzled, forgetful and low ebbing brain. So when I’m not preoccupied with my shell, what does this snail like to do? What lies beyond all the things I’ve been writing about? Well, I’m going to be honest – not fast movement. No sport.

Written on May 28 2016

As Through A Glass Darkly

Today became a day of thinking, after half a day of reacting. The busy busy of Monday, led to the inevitable crash, but unexpectedly it was an emotional crash. For so long it’s been physical. I’m so used to the physical. The pain, the stiffness, the weary routine of failed plans and weak, un-reacting limbs. The sleeping, the pill popping, the emptiness of physical restriction. Mental, emotional reaction – deep and potent reaction can end in the same physical condition, but it is a beast of a different hue. I’ve had 2 absolute mental breakdowns, and one questionable one. The Questionable One (sounds like a contemporary troubled TV Hero) was during my late teens, when I was undertaking my A’Levels. It’s Questionable because I had been depressed during my whole teenage years – my Tricotillomania began when I was 15 during my French GCSE classes. But what happened later was different – I became topsy turvy, and unable to have my own judgement as something to follow. I was unable to cope with the pressure of school in terms of academic achievement and also in terms of being a female human. I identify, I name the female element because it was key. You see I wasn’t a ‘proper’ girl. I was tall and clumsy and spotty and I didn’t behave like the other girls. I was brought up with boys (my brother and male cousin lived with me) and went to all girls schools until I was 17. This meant that my experience of boys was separate from my experience with girls: I did not experience them together. When I went to my 6th Form this changed. The girls were the same as ever, but the boys treated me with hostility which I was not used to. I was used to bullying and being talked down to (my Brother and Cousin are 5 years older than me and my Dad wasn’t enlightened) but by older males, not contemporaries. It did not help that I had been identified as potentially getting high grades. In addition to this, the teachers were not helpful, indeed they were sometimes incompetent. Once I made it clear that I was a) taking a ‘Gap Year’* and b) not going to Cambridge, things got even worse. I could have set myself on fire and no one would have pissed on me. I was even bullied (shouted at) by 3rd years. This school is one of the best Catholic Boys State Schools in London. It had the Pastoral Care of Satan. All of this contributed to a Gap Year that really was more a gap between the ears.

The Absolutes (terrible Indie band?) were during University and after my first Romantic relationship failed.

Opening the Drafts Box

In the next few days I’m going to publish all the little bits of unfinished writing I’ve got in my Drafts box – over 20 of them. I think I want them ‘out’, but not deleted. I decided when I began this blog that I would be ‘honest’ here, and that includes splatting all the crap I’ve written and not finished. Most of it’s not finished because I got too tired to carry on writing, and when next I returned to the computer the subject written of was over, or forgotten or pushed out of the way by something else. Or I’d changed my feelings so much I didn’t recognise or couldn’t tune in to the person who had written.

Much of this is key to depression: tiredness and mood change and a terrible memory. And I am, foremost I think, a depressive, or someone mentally ill/mentally different. First (it being something you are born with) I am someone with Asperger’s and Ehlers-Danlos Syndrome. I believe the former has affected me since my first breath, the latter since I was 2 years old. I have definitely suffered from depression since the age of 6. I’ve been in constant pain since I was 11. And disabled from 12. While my vision started to go at 2.5, my hearing waited until I was 18. I couldn’t walk from the age of 12-22, and now I can limp a bit further. Started pulling my hair out at 15.

I don’t know how much of this will be covered in the barrage of half-writtens following, but it may be. Sometimes I write as above just to remind myself.

Having smoke* blown up one’s ass.

*Air, actually.

Medical stuff and life stuff:

Medical: Today – finally had Colonography – 2 days of fasting and chemically induced diarrhea, 10 minutes with a compressor pumping gas up my butt, 10 minutes in a CT scan. There we went. It took a month to organise and 48hrs 20 minutes to do. I’ve had Diarrhea now for 24 hours, and I’m basically dropping (at great speed) Bovril/Bisto – nothing, including Immodium, is stopping it. The 4 litres of air were pumped into my gut, and more than that has been coming out. But it’s over. I await the results.

Yesterday: I phoned the Physio Hotline and found out that actually, I’ll have to wait until March to get an appointment, even though the text I got from them made everything seem INCREDIBLY URGENT: CONTACT US OR BE TAKEN OFF THE LIST! I phoned my Bereavement Councillor to cancel my appointment – in time (I could not have made it through without shitting myself). Oh, and I also had a migraine. Whoopee.

Oh, and the day of the scan my period started. Which must have been an added bonus for the lady putting the tube up my ass. It’s early. Very early. It may be the fasting or perhaps the Gastrografin liquid I had to drink: it’s a radioactive tracer you drink that coats your colon… it tastes vile. I’ve never thrown a medicine away more happily. I hope everything settles down below the waist soon.

Other Stuff:

My Dad and I went to see the Scythians exhibition at the British Museum. It was excellent. I full on proper exhibition. The Scythians are the ancient people who lived in lower Russia – the Steppes. They were nomadic, living in what we might consider Yurts. Horses were key to their culture, as was being excellent archers. But the great thing about them is though we don’t have their buildings or writings, we have them: natural (ice) mummies. It was amazing to see their textiles preserved (properly amazing – they used lots of felt which is pretty impervious, but also woven fabrics), then the many gold items. But really stunning was to see bits of them – pieces of tattooed skin, and whole heads. Astonishing. I read every label and spent 3 hours with them, while my Dad went and had a coffee. Oh, and they inhaled the smoke from burning hemp seeds in a special tent.

That day though, was a bit difficult. I got very spooked – we were running late for the show, I lost my Oyster card while on the underground, the queue for the cloakroom and the toilet was massive, and I started to panic when I’d only just really started the exhibition but my Dad found me to tell me he’d finished. It was like the day I lost my gloves losing that Oyster. It was a 2012 Jubilee card and I remember getting it and showing it to Mum. It also had £6 on it and that bugged me. After the exhibition, my Dad kept trying to buy me books (one of his ways of showing love), which also spooked me, and made me have hints of catastrophe again. He took me to dinner and we discussed lots of stuff that would have made me feel very uncomfortable 2 years ago. Since our getting along I’ve had more Catastrophe thoughts. I must be careful to not let these become a habit. Or a crutch.

I began Batarde Script. Yes, I returned to Calligraphy. And I enjoyed it. Lots of new people, and a real mixture. And a new script. The perfect mix. I’m hoping I’ll continue to enjoy it. The Charity Bookshop I volunteer in is closed for 3 weeks while it has a re-fit, and I’m hoping that this circumstance will aid my enjoying calligraphy. I find the 2.5 hr class very physically demanding – perched on a high stool and bent over a board. It really takes it out of me and causes much pain, as does doing the homework. Having done this and then the next day having Volunteering has really fucked my back and hips/knees in the last 6 months, and I’m hoping that only having one bout of pressured doing* will help. Else I’ll have to re-consider either when I do my volunteering, or if I do it at all. My right knee and hip have become so painful that getting upstairs is difficult. In addition, my knee has become very unreliable – vis – I went to stand up on it the other day and it ‘went’, the pain was so shocking I don’t actually know what was happening with it – if it locked or was too flexible – I don’t know. I tried ‘re-setting’ it, shaking it to loosen it – all the tricks, but the fucker wasn’t playing and the pain wasn’t going anywhere. If I’m going to have to wait until March to have the physio I need, I won’t be able to use it as I have been – so the Bookshop may have to go for a while.

*Any form of regular responsibility where I feel an obligation to perform, even if that I’m performing is just pricing art books from Abe for no pay. Any obligation/responsibility does this to me. It makes me physically and mentally more ill than my baseline.

Eugh, I’m off to fart for Great Britain – that 4 litres is making itself known, and if I’m not careful I’ll shart.


Catastrophe Vole

My favourite animal is still a Sloth, but my ex-partner was, to me, a Vole: very furry with tiny eyes. That’s why the title. Oh, he’s not back – I just wanted to explain. He used to catastrophise as I do, but I talked him out of it.

So, I’m currently being nibbled by the tiny, yet sharp teeth, of the lesser spotted Catastrophe Vole. Lesser spotted these days thanks to a fuckton of meds, lots of therapy and so much else.

But it creeped up my trouser-leg and bit me in the guts today. Because I got things done.

I told you of my list? Well I got some of it in order. I went to bed very early last night, woke at 5 am today and set to work. I phoned my GP at 8:30, hung on and on and didn’t get anywhere. Went to see my Psychiatrist – gave her a big pile of paperwork from the Maudsley about my Asperger’s that she was not sent. Oh, and that also didn’t get to my GP, though both were cited in the CC. at the bottom of the letter. Discussed starting the Pregablin that I’ve had for 6+ months but haven’t yet taken because I’ve not had 6 free weeks to ease in another pill. Decided I HAVE to take it, and see what the fuck happens. Arranged for me to have an ADHD screening and also inducted me in to an Asperger’s study. All in 23 minutes. The Mental Health Unit copied my Maudsley letter onto their records.

After this I went to try on some more glasses, got money out of the bank to pay for a letter from my GP referring me to a Private Dermatologist, and also walked to my local junk shop to look for a pottery jar to put (yet more) pens in.

Got home, phoned GP again, made latest appointment I could for today. Went shopping in Ealing with my Dad and bought my annual diary. Suddenly got very, very ill. Really ill. Kept plodding and looking in the charity shops for a pen receptacle (no luck this time, but usually I strike it lucky), tried on more glasses. Couldn’t keep going, so flumped in the cafe of my local Marks & Spencer. Had a cheese and ham toastie. Felt better. Phoned private Dermatologist to make appointment. Bought a hook for the kitchen* and headed to GP.

I had a list for my GP: dermatology letter, pills I need for my CT Colography that the hospital failed to dispense, check on my recent blood test, chat about my hair loss, and, and – most important – referral for physiotherapy.  He did it all. And the surgery didn’t charge me for the letter. They too copied the 20+ page letter on to their system.

So, so you can see why the Vole got me.

Can’t you?

Something has to go wrong now. I can’t get all this done so easily. Something has to go wrong.

I’m going to fall asleep on the sofa with Shrek on DVD repeat. Perhaps my stye will grow when I’m asleep. That would be a fitting retort from the Universe. That would be ok.

*To hang stuff on the wall. I must remember about eating.

This is a water Vole



So Typical! So New!

Oh look, a ‘blogger’ writing on the First Day of a New Year! What a shocka! Ah, well, what can I say, the New Year Spirit got me and I did not fight it.

Catch up! Catch up!

Now, I’m not going to bother to go through and see what I’ve already jotted here, dear reader – partly because I’m too lazy, but mainly because I’ll get involved or bored or I’ll forget, or my flourish of enthusiasm with wilt and I’ll not finish writing this. So – to let you know where I am ‘at’ – what the current list of dullard physical complaints is, and perhaps a mental pre-occupation or two.


Yes, bums, arses, anuses – the place the poo comes out*. A month of phone calls re-arranged my CT Colonography (??) and attendant meds, and now I’ll have wind and a camera shoved up my bum on January 12th. Just to check for Cancer. Because that’s what they do. And that is good. But the delay has changed my tiny little flutter of worry (you know the one, the one you get before any blood test or scan where there could be Something Wrong but it passes cos you really know it’s nowt bad) into full on ‘can’t sleep with visions of my Aunt/Mum skeletal with tumours’. So now I’m not looking ‘forward’ to it – not that I would ever look forward to having a flexi wand camera jobby put up my bum – not my thing. But in reality, beyond not getting positively stimulated by it, my previous experience (not enough sedation, then too much, and lots of wind pain after) was so horrible that I properly don’t like the idea. I was very sick in 2000 when I had it done and the pain was great.

*But it doesn’t, which is why we’re here.


Lots of bad cysts and all the skin problems. Scaly greasy ears, spots all over my shoulders and chest, acne various and now the beginnings of hives on my arms. I’ve been a little stressed. A smidge, so my body is attacking itself. My acne/cysts/scales, are something I am going to tackle this year. They are third on the List.


Am very blind and uncomfortably so. After eye test (How are you getting around? Your prescription is so out of date…), I am actively looking for new glasses. This will be the first pair I choose without my Mum. I am as wonky of visage as I am of body. My Mum knew what I would like to look like and she knew how totally fragile I am about my face- to the point of not leaving the house because of spot or because of how large my nose is. So she helped in choosing the glasses. Total First World Problems, but my Achilles Heel (or Septum). This calmed down as I grew up, but the prospect of The Wrong Glasses has awakened the anxiety. In addition, I won’t be allowed to change them. You see, I can’t afford my glasses, they will be purchased as a gift by my Dad, so once I have them, I’m stuck with them. In the 27 years I’ve worn them, I’ve had 3 pairs. I think this pair are 8 years old now. I know that is not ‘normal’ – my friends and family change their glasses all the time. But I never have. If they don’t like a pair, they buy another. I am so blind I can’t see without my prescription – now I’m so so blind I can’t see what I look like in a mirror close up without glasses, so when I try on a pair, well, I have no idea of if I’ve even managed to put them on straight. Selfies etc. are all well and good, but I can tell you that what I look like in a camera phone, and what I look like in my mirror are not the same. To say I’m ‘unphotogenic’ is a weak jest. I look weird in real life, but I look a different weird in photos. Indeed it’s amazing the variety of ‘a bit wrong’ I can look. This is not my paranoia or aesthetic standards talking – this is plain fact. My face is lopsided and even my Dad admits it’s not ‘normal’. Hell, the optician said I had ‘a surprisingly small face’ for ‘such a big person’. It’s true. Glasses look normal in the opticians hand, but they put them on my face and suddenly they’ve engulfed my cheeks like a Facehugger from Alien. So you put my self dislike together with a genuine problem (tiny face/ bent features) and you get a hot mess. Oh, and when you’re picturing the shrunken headed hunter from Beetlejuice, add in that the right eye goes off up to the corner – it’s not interested in you.


Beetlejuice – Harry the Hunter and his Shrunken Head.

Dem Bones, Dem Bones

Top of my list this. I can now barely walk and I certainly can’t bend over. My shoulders are so painful I am covered in Ibuprofen Gel.  At the moment the only bit of me that’s not hurting is my nose. All the joints are painful, but worse, they are not working. I can’t lift my right leg up properly, and if I can get the damn thing off the ground, that hurts my hip. When I put my foot down, the knee hurts. I’m limping badly, but with both legs, so basically I’m doing a Boris Karloff in Frankenstein. Double Limping is not yet an Olympic Sport, but it’s so fucking ridiculous, perhaps it should be. This encroaching physical lock down – the feeling that I’m gradually becoming stone, is the worst of my problems. My acne makes me depressed and feel all the horribles you feel as a teen. My eyes are annoying – as is the Tinnitus etc. etc. But not being able to use my arms or legs properly, and both at the same time is a kind of torture. It is frustrating and just brings on despair. Why, well beyond the obvious – I CAN’T FUCKING MOVE HERE-  there is the little additional jabs – it’s been the sparkly season, and I’ve not been able to enjoy it. I’ve missed exhibitions and parties and all the good things. And those I’ve managed I’ve really not enjoyed. I’ve also wasted my mobility. I’ve never considered buying gifts a waste before, but I did this year. I had so few good days in December that I grudge those I spent out shopping. Those I spent not being selfish. This is because I really needed to be selfish- I needed to use my mobility for other things. But I didn’t. And now I have a back-log of things to do. I have a lot of ironing, clothes washing and cleaning. And I mean a lot. I have a house full of ‘Things That Need Doing’ – and I’m getting nagged by my Dad about it. Which makes it feel urgent, which makes me feel anxious, which makes me ill. The anxiety ‘helps’ my Acne flourish. Increases my joint pain and has led to…

Stomach Problems.

Not Bum Problems. Pre-bum. I’ve stopped eating properly. I’m going to admit it. I think I have a problem. I really enjoy throwing food I’ve bought away. I mean really enjoy scooping it all into the recycle bin, and putting the packaging in the other recycle bin. I enjoy not eating. When I do eat, I eat crap (pastries, pop corn, Shredded Wheat). I can go into a restaurant and not fancy anything on the menu. I can’t think of a smell that makes me hungry any more. But I’ve been eating cakes. However even this is now a problem. I ate at Christmas – on Christmas Day, and I had such bad acid reflux I was burning in the mouth. The next day I immediately went back to not eating. But the reflux remained. As did the burning in the gut. I had terrible wind. Now, on Dec. 21 I had a full plate of food – the first I’d had since October, and I felt sick. But it was ok. However that was a moderate Pub Grub meal. Christmas Day was full on Bowerman dinner. Dinner and pudding and then ‘tea’ (cold buffet) and more pudding and O God did I stuff myself. I felt awful – like I was drunk but I’d imbibed rocks. The next day I was in a coma of food and indigestion. And the next day. Hell, the pain and burning. Today I have eaten properly again. And I’m going to try to get back to a plate of food, rather than either a pastry or nothing. Oh, and I forgot about Acid Reflux and Gaviscon. Yeah, smart me. Thank fuck I remembered. And bought a new bottle. My stomach still hurts, and thinking of throwing food out makes me feel happy. But I think I may fight it. I know it’s not normal. I’m seeing my Psychiatrist on Wednesday and may tell her.  I know this may be affecting my mood, and also lots of things (I’m Anemic and Vit D deficient and my hair is falling out…) but I just don’t know if I care enough to change it. I think I like it too much.

So these are the problems, well the physical ones. There’s lots of other stuff. My Brother is not coping with the ending of his marriage. He is worrying my Dad, but my Dad is passing it on to me- he came up while I was writing this, to report verbatim a conversation he had on the phone with my Brother. He is treating me as if I were my Mum. There is still the Sword of Damocles that is the clearing of the Shitpile that is my house. The unending saga of flooring, paint colours and all the other tripe. And then there is my truly personal Stuff. Like what the fuck am I doing with myself? And ‘What is the point?’. Eugh. So Teenage. I hate when these things pop up in the noggin because they’re so OLD. Been there, thought that. I want to punch those thoughts in the face.

So Welcome to Bowermanland at the beginning of 2018.

My List: See GP about joints (hip, knees, lower back), choose glasses, see GP about skin, find out what is going on in my Bum. Whoop whoop.

Old Wounds, New Money, Lost Gloves

When I get very worn down, all my old pains come out. They wake up like Dorothy & Co in the poppyfield outside Oz. This has happened and has lasted so long, I only realised how long from looking at when I last wrote. Dayam.

So, to catch you up: I had a colorectal appointment where a nice young man stuck his finger up my bum and told me to have a colonoscopy that has taken so much time and stress to organise that I’m actually galloping through Yuletide so I can get to it on December 29th. I have to starve myself and take bowel cleansing drugs for 3 days before hand, so the Christmas Feasting ends on Christmas Day.

I’ve begun bereavement counselling. This has been interesting. My counsellor is of the gentle soft voiced ‘and how does that make you feel’ kind, which I thought I’d find intolerable. But, actually having 50 minutes to talk about Mum and related things – the impact on my life of her absence, has been very useful. Dad doesn’t know. I have to contribute to the charity that runs the service, but I don’t mind. It’s a lot cheaper than a Private service.

I’ve finished my Calligraphy Course and booked myself another for next year. I feel I’ve actually made progress. I’m repeating a lot of what we’ve already done, but I don’t mind because I’m improving. However, the course really has taken it’s toll on my body….

….I’ve been in a lot of pain.

I’ve had old pains come back. And new pains. The height of my pain was in 2004 at university, when I thoroughly damaged my shoulders and arms carrying books. Everything went wrong – arms, hands, shoulders, elbows, neck, spine, hips… ankles and feet (knees were ok). Recently most of these pains have come back, excluding hands, and with the addition of such great pain in my knees I’ve had to rub ibuprofen gel on them and put a pillow between them to sleep. My hips and lower back keep seizing up on me, and my left ankle suddenly burning with electric jabs of pain when I put my foot down. After a month it’s not calming. I mentioned it to my GP, who told me to come back to see him because he could only deal with 2 problems per session (in this case my not being able to poo without ‘digital’ help, and my hair falling out). I’ve not been back because I’ve been trying to sort out lots and lots of other stuff – colonoscopy for one.

So far I’ve had a finger up my bum, been to a bereavement counsellor and been in pain, what more?

Well, I’m really, really short sighted. Finally went to the Opticians and he asked me how I was able to read the destinations on the bus as my prescription is so bad… in addition to this my eyes are so dry my tears didn’t register on the bit of paper they stick in your eye to test them. So new specs are needed and I have new eyedrops. These will be the first spectacles I will have chosen without my Mum okaying them. I’m so blind I can’t see what I look like in a mirror, and I don’t look like any photo etc. taken on a phone. I wonder what the new glasses will actually look like – I feel I ought to get them from my independent optician so as to support him, but his frames are not nice. I will definitely get him to put new lenses in my current glasses.

My ‘smart’ phone is dying, and I feel sad. I must have got it just before my Aunt died or after that and before my Mum was diagnosed with Cancer. It has my last text message from her on it. And my photos of her before and after the disease started to waste her. The need for a new phone, and new glasses makes me think of her a great deal.

In fact the ‘new things’ she won’t see are a big part of my thinking. She’s never seen my calligraphy, and she was the one I always showed any art stuff too. She’s not seen the rooms we’ve finally finished. So many things. When I find old receipts in the house, I think ‘was that before or after Mum’. Our new currency – the new Pound coins- she won’t have experienced them. Perhaps this will wear off? I don’t know.

I’ve not seen any art shows, or been really stimulated – in fact the opposite. I’ve really stopped many of my old things. I no longer wear eye make-up – only foundation to cover my terrible skin (so many cysts! so much scarring recently), and a tinted lip balm. That’s a big thing. I’ve been wearing full make up (not just the necessary foundation) since I was 17. 20 years. But now I just can’t be bothered.

It’s been very cold here, which has affected my body. To combat cold I am extremely well prepared – layers, scarves etc. I have lots of gloves. However, I lost my long, soft, cashmere lined leather gloves. I have to have long gloves because I have long arms and my coat sleeves are too short. I found the ideal ones 3 years ago. I remember showing them to my Mum and admitting they were expensive (£39). 2 weeks ago I took them off on the tube and balled them up. While snarkily texting a friend about the annoying couple opposite, I forgot them as I got off the tube. I felt this was a punishment for being bitchy. I’d had a good day, really good- a gallery gave me a replacement ticket for a show I’d missed because my body was clapped out – and I felt that losing my lovely gloves was divine justice for being horrible about a happy group. In the end I didn’t get to the show because I felt so scared and rocked by the glove loss. That is how I thought about everything until I was 26 – I could trace every bad thing that happened to some un-Christian thing I’d said or done. The above seemed such a powerful return of that, I got utterly spooked. I loved those gloves, they were beautiful, and they made me think of Mummy, and I lost them because I was being a cunt about strangers.

I’m still shaky about it. The recent pain, agitation etc. has so got at me, I’m still scared because of a bad thing I did 2 weeks ago. This shows that fundamentally, I’m worn thin. That I’m weaker than usual in the old noggin – I could get ill*. I’m going to try not to.


*Yes I know I’ve got conditions, but here ‘ill’ means ‘having an episode of acute mental illness or physical illness that’s out of the norm’ – like my Pancreatitis.


^ Gothic. ‘Semper Eadem’ was Elizabeth I’s motto, it means ‘Always the Same’ in Latin. This was an exercise in using graduated colour. I made it a joke – as the colours are not ‘Always the Same’. That’s the kinda pretentious dick I am.

All Hallow’s-by-the-Ween

One of my favourite ‘London’ or ‘City’ churches is All Hallow’s by the Tower, near the Tower of London. It’s extraordinary. In the crypt is a Roman building (and Roman street), while the roof is moulded post-war concrete. All of London’s history is found in between, including a stunning font lid by Grinling Gibbons. I studied Wren and Hawksmoor’s London Churches as part of my degree, and this is one of few that I managed to visit with my Mum (thus rendering it EXTRA SPECIAL) – it is genuinely very very interesting. If you’re ever visiting the Tower of London as a tourist, go to the little church between it and the station. It’s free, and it’s beautiful, and special.

I don’t do anything for Halloween. I did once, but it was not successful, though I made a fucking fantastic costume for my partner – a calico version of Buffalo Bill/ Jame Gumb’s ‘Girl Suit’ from “Silence of the Lambs”- it was painted different skin colours – including fake tan, and tattoos, and even had a bush of grey public hair and asymmetric boobs. It was a bit more ‘Frankenstein created woman’ than haute couture skin dress, and that’s how I like it. Now I just hide in the kitchen and turn the lights out at the front of the house to discourage knocks on the door. It’s not that I mind Trick or Treaters (though one year when we didn’t open the door (we genuinely didn’t hear them) they splatted our house with eggs and shaving foam – a bastard to get off. It’s because my Dad hates it and acts so badly. Our road is a family road, and you can see the groups coming , covering the whole street, from 5-8pm. Polite, mainly Japanese families. I have no problem with Halloween, as my Mum did. To me it is an important festival, something primal – particularly when it falls as now, just after British Summertime ends and the clocks go back. The sudden onset of darkness and confirmation of Winter has always been primary to me.

Last week was the 2nd anniversary of my Mother’s Death. I spent the real day walking through Kensington Palace Gardens, then to Leighton House Museum, and then ate a Nando’s. Kensington Palace Gardens are beautiful in Autumn – fresh and sweetly perfumed. I started going there a lot in 2014, and when Mum was sick it was an important escape for me. Sometimes I go in the Palace, but mainly I walk through, look at the sunken gardens and trudge to TK Maxx on Kensington High Street. I may get coffee and cake in a fancy cafe, or cheap chinese in Stick and Bowl. This day I did not. I found a Nando’s. Nando’s is a Peri Peri Chicken phenomenon in the UK. When I was in 6th form (20 years ago) Mum and I would get a Nando’s after she finished work on a Friday. It was beside Ealing Common Station and we would call up and get take away. Since then, the chain has spread like a virus, becoming the most popular family restaurant in the UK. I did not know that I had been going to the first Nando’s in the UK. We stopped the ritual in 2000 when I went to Uni. Last week I had a variation of my original order. It was horrible and the experience disappointing, but that was kinda OK. I’d been feeling nervous, like something should go wrong – I was glad it was my chicken burger.

The next day, which is the official day of Mum’s death, I stayed in bed – exhausted from the previous day. Dad, I was later told, went to the grave. I have not visited since the funeral. He mentioned getting a stone. I have already considered all of this, and my superstitious nature means I’ve not mentioned it. As you know, the only thing, proper thing, I own in the world is my grave (currently occupied by my Mum). This spot will house Dad and me. I am supersticious about getting a stone up, only to have it taken down very soon after. I don’t want that to happen. But Dad has mentioned this twice in the last 3 days,  it’s important to him and it will be done. This changes things. Dad goes to the grave, I do not. If it upsets him, actively upsets him, to see just a wood cross with a plaque, then I will get to designing a stone. Because I do not want him upset. I want him to feel free to visit Mummy when he likes. I’ve found some masons. It will be difficult because I am difficult to please, am very interested in gravestone design, am interested in letter forms and letter carving, and also know that since this will be my stone, and the only thing I’ll leave behind* I want it to be nice. Or if not nice, a bit me.

Today a strapping lad came to install our wardrobe. The wardrobe first designed in March or April. I also had a hospital appointment. The wardrobe saga was not finished today because bits of it were missing, and then there were other extra bits. It was stressful but not deadly so. My hospital appointment was for an ultrasound of my ovaries and bits. I had to be full of water when I got there. I was. I had to wait an hour for my appointment so I was not just full of water, I was urgently full of water. They did not mention on the form that I would also be having an internal ultrasound. I was not expecting that, but it was easy. I’ve decided that my sex parts are very relaxed. They just go with the flow. Yeah, an ultrasonic dildo was just randomly put up there and swirled around (gel lube was used), but Madame Uterus didn’t seem to mind. I needed to fart afterwards and it did take a bit of walking to waggle everything back into place, but it was not a trauma. I have had one bad gyno experience where my smear was horrible, but this lady knew what she was doing. I still need to fart. According to the radiographer, I do not have PCOS (polycystic ovary syndrome) though I tick all the boxes outwardly** – I have cystic acne, my hair is falling out, I have heavy periods, my body shape and weight gain is very PCOS. But no. So I’ll have to find out why the hair is falling out. It may be stress, it may be bad nutrition – but I’ve had both before and not lost hair like this. We’re hoping the wardrobe’s will be finished tomorrow.

I have finally organised my bereavement counselling. It should start in December. I’m not going to lie, I’ve been putting it off, but finally got off my ass to do something about it. Later this week I hope to get my butt down to the local medical centre to get my blood test. Then I can rest easy about medical things for a while.

Gibbon’s Font Cover, by Bob Easton

Bob Easton on All Hallow’s By The Tower:

*I intend to leave my body to science.

**Yet another medical complication. Great.

Leighton House:


Small Mercies

  1. Accidently took double my dose of Citalopram and did not die/feel sick. Did not sleep however, but number 2. helped:
  2. Found Buster Keaton biography while volunteering in bookshop. Excellent.
  3. Watched amazing documentary following TV nature show personality Chris Packham (@ChrisGPackham) talking about his Asperger’s. Made me weepy as he recalled his overwhelming love of his pet kestral and how he never got over it’s death. Made me recall my ex-partner in so many ways. He was only really happy in nature, didn’t like humans, had the same experiences at school. I wanted to text him and say ‘You really should watch…. might help’, but could not. Have not seen him in a year. Have not contacted him since April. But think about him often, and get nervous. Earlier in the week I was in his ‘manor’ and scuttled around trying to do everything super quick in case I heard the ‘tappity tap tap’ of his dog, or smelt him.
  4. Floor in smallest bedroom was laid without my being woken up or harassed.
  5. Got appointments through for both abdominal scan (Hello Ovaries!) and colorectal dept (Hello Anus!).
  6. Blesh book on Buster Keaton delivered. Excellent also.
  7. Went to dentist and a) got there in time b) didn’t have to have a filling – what I thought was decay was just *staining*
  8. Had entertaining chat with Dad in cafe after relief of dentist.
  9. Went shopping in my old manor – felt my Mum ‘with’ me a great deal. Then I got terribly scared. I bought some £1.99 DVD’s, and a £8 cardi. Indulged in waffle. Then bought myself something sparkly. Suddenly terror arose: buying all this indulgent stuff. What is going to happen. Is my Dad going to die. This day has been OK: something must go wrong.
  10. Coated kitchen in fly spray in desperate attempt to kill fruit flies.
  11. Am writing. Still waiting for something really bad to happen. Am now in totally heightened state of fear. My friend found out that the house she wants to buy is available. There was a good TV programme on Art on… something must go wrong.

That is the week so far that is.