Volcano or Not

Another Quackdate, because it’s all I’m capable of at the moment.

My WCA has been cancelled. Again. I admit, I have had to change the dates of my WCA, so that my Advocate could make it. But I’ve always done so ASAP. I was called on Monday to be told my WCA on Thursday might be cancelled because my file had not made it to Ealing. I was told this would be confirmed on Tuesday. It was not. They did call me, but I was unable to answer, so they left a message telling me to call them before I went to my WCA. They spoke to my Dad and told him it was cancelled, but that that was not official? So I called this morning, having not been to sleep for 24 hrs.It is cancelled, they will send me a new appointment. The lady I spoke too could not tell me anything about how to make sure I could change my appointment if I needed to – because of my Advocate. You see, I, as the random human, am not allowed to alter my Maximus – Government appointment, more than once. Maximus/Government can change my appointment many times, they can fail to get to my paperwork, they can lose my documents and they can humiliate me at Medical Examinations, but I can only change my Appointment once. I can organise transport, advocates and paperwork for a specific date, and Maximus/Government can sweep that away with their incompetence, and I won’t get another chance to organise again. I won’t get another chance to get prepared.

So I’m waiting for another appointment. After calling Maximus/Government, I phoned Ealing Mental Health to tell my Mental Health Nurse that our meeting on Thursday was cancelled. She is off sick, so I had to leave a message – I really hope she gets it and doesn’t turn up to meet me. I don’t want her to have a bad opinion of me, because I’m going to need her support. Why? Well, apart from the fact that I am a mentally unwell, currently quite vulnerable person, I will need to have her come to my next WCA. I will need her to change something in her life for me. Two weeks ago, I had 2 advocates – Ann at MIND and Anita the Nurse. This week Ann told me that MIND are no longer able to support Benefits Claimants. I don’t know why, she didn’t really know why. Her boss has told her her ‘role has changed’ and she cannot go to WCA’s with people like me. And more importantly, more desperate and needy than I am. It may be lack of resources, or it may be Political. I do not know. So I lost my First Advocate, a person I’ve known for 6 years. I really don’t need to lose another one. You see, I was just Lucky that Anita was available to help me. I told her the date and she said she’d come. What is the likelihood of her being available again? A busy nurse.

So I’m a bit Fucked really. And not in a sexy way. I’m flat and exhausted and very close to the edge. I’m going to listen to a new audio-book. Nowt radical, just Gaskell’s ‘North & South’, which is safe and has a love story.




Definite Maybe

So, Thursday I am meant to have my WCA. I had organised for it to take place in my local Job Centre, I have organised an Advocate, then two. Originally it was meant to happen on August 22, but I had to change it to Sept.8. Then MAXIMUS changed it to Sept.20, but my Advocate couldn’t make it, so it was changed again – to the 29th. Now I’ve been contacted to tell me that it may not be happening on Thursday. They have to give me 3 days notice of a cancellation, but this is not a cancellation for definite, it’s a maybe. So rather than actually calling me, when they actually know what’s happening they  phoned me on my mobile and also talked to my Dad to shit me up when they have no fucking idea of what’s going on. My file has not arrived at Ealing from Wembley. They’ve known about my appointment for 23 days or more, but my file hasn’t made it from Wembley to Ealing. Please look up the two on a map. I can see Wembley Stadium from my house. Ealing is closer to the Stadium than I am. They could walk it. They could strap it to a snail and it would be there by Thursday if they tied it to said mollusc now.

I’m angry, but worse, I’m upset. They contacted me when I was out.I phoned them back while I was in a cafe, and now I’m scared they’ll judge me for being out of the house. I don’t know what they said to my Dad, or what he said to them. He’s a rogue element. I was feeling low and exhausted and at the edge anyway, and now I feel like I’m 50% over the edge. I’m so tired. I wasn’t going to bother to get the new additive anti-depressants from my GP until after Thursday, but I may have to now. I’ve run out of Diazepam, bleeding like a pig, everything hurts and there’s nothing in my imagination that can make me feel happy.


Rather than ‘Update’. I like the word ‘Quack’.

  1. Most Recent Thing: last week I sent a copy of the supportive letter sent me by my Mental Health Nurse to Health Assessment Advisory Service, Wembley Centre of Health and Disability Assessments. Today it came back. I’ve checked the address and I used a 1st Class stamp. I was returned without a postman’s note or similar: bottoms of arse 026.jpgI covered my details with a pack of Crayola. I’m going to send it again… everything else I’ve sent has been addressed thus, and it’s been fine.
  2. The Gout Strikes Back: Dad has Gout again. For too long he’s been living off of ham and oven-ready pies. Neither of which are good for Gout. When I have any energy, the food situation in this house is going to change. Chicken will be re-introduced. Vegetables other than carrots will be eaten. Salad will appear. I’ve not been eating. I don’t know if it’s stress or if I’m actually sick. I’m not considering this properly until after Thursday and my WCA.
  3. Tubi-grip returns! I’ve not worn a wrist support for a long time, but now I’m back in the Tubi-grip. My right wrist and arm have been sore for a week, but I kept forgetting to put the damn thing on. Now it’s on and it’s staying until it feel ‘ok’ again.
  4. Poop: I managed to shit Everest. I had to risk a Bisacodyl, and I didn’t leave the house, but it happened. Yes, it needed help, and that was made nasty by my being on my Period. I was not wearing a Tubi-grip while wiping. I’m hoping more will happen today, as I took another pill last night. I’m hoping that it won’t be a forceps birth.
  5. Dirty Protest: I am unclean. I’m not going to lie. I never have been a ‘shower every day’ person. I was a ‘bath-a-week’ kid, washing in the kitchen sink for school, and I was a stinky teen, but as an exhausted, physically sore adult, I tried my best because of work and social pressures: I don’t volunteer or attend a class or appointment when nasty. But since now this means I’m clean about once a week, I am going to reflect this reality at my WCA. I do go out into public, unwashed. I only have 3 bras, so I will wear one 2 days, I wear clean pants and tights or socks but I will not be washed. I will ‘Teen Boy’ – spray myself with deodorant etc. but physical washing will not occur. Washing exhausts me in a way nothing else does. It’s very odd. Showering is tiring and I’ve not been in a bath for 10 years. But at the moment, my lack of ‘clean’ is WCA related. I have my medical on Thursday, and while I will be clean between then (I have an class) my clothes won’t be.

Other stuff has happened, but I can’t remember. My periods are causing some serious pain and feeling faint, and I’m having weird dreams, but I think this is all stress related to Maximus etc. My knees, ankles and shoulders are all hurting, but again, I’m going to wait until Thursday is over before addressing it.


September Song


Jan Gossaert, known as Mabuse (1478-1532): A Young Princess (Dorothea of Denmark?) c1530, National Gallery London – https://www.nationalgallery.org.uk/paintings/jan-gossaert-jean-gossart-a-young-princess-dorothea-of-denmark

September is an important month for me. It was always September and January. September because of the return to school or University, and my birthday. And January because that is the month I always had my breakdowns – when things went a bit wrong. This September has been wobbly. A bit different from the other months this year. I spent the end of August in Vienna. As I did 20 years ago. But this time I was with a Friend and not my Family. I talked to my Dad on the phone, but I missed my Mother intensely. I wanted to show her what I’d seen and talk to her about it. It was a completely new experience for me, even though the City was familiar. I was going to write about all the new thoughts etc. that this provoked in me, but actually I can’t because after less than a week, I couldn’t f*cking remember. In fact last night I realised I couldn’t remember last Wednesday and Thursday. Not a thing. I looked through my Diary, which I try to write every night, and there are gaps where I’ve gone to write about a Thursday on a Saturday and I can’t remember. About this, I am a little worried. I used to have an amazing memory – read a page and remember the whole thing memory. I didn’t have to revise for exams – it nearly all went in the first time. When I was at University and had my breakdown and car accident, I was put on an anti-depressant that destroyed this facility. I had to learn to learn again. And read. In the last 4 years my memory has become terrible, and since I began to go deaf on the left, it’s gotten worse: my aural memory was amazing. Now, nothing. But that is not actually the point of this post. This is really just a ramble with some info in it.

I began my Calligraphy Course on Monday. It was difficult. It’s going to be very difficult. I’ve got to learn to write a totally new way. It made my right hand ache like a bastard. Today that hand hates me. University was full of this. I used to be able to write 16 sides of A4 in an hour, in pen. I could write down a whole lecture. It fucked my right hand up, I ended up having to have ‘Hand Therapy’ (Fnarr fnarr) – physio for paws – and doing my Finals in a wrist brace. My thumb, wrist and whole arm are aching. In fact, more and more of me is getting sore. I am getting concerned. My mobility and physical ability have always fluctuated. 14 years ago at University I went though a year of ‘stone’ where my back, arms, neck and legs, in turn, began to just stop moving properly and cause me whimpering pain. This happened again in 2007-8 – the last time I worked. I changed a lot in my lifestyle etc. and managed to keep it at bay. But it’s back. Every couple of days my ankles and knees start to burn and ache, my elbows have begun to just flame and my right shoulder has started to join in. After 2 days it seems to go away – or I do so little (stay in bed) that I don’t notice. But now, now it seems to be around all the time. As I sit writing, my knees and shoulders are burning. I went out today and my knees and legs were so ‘loose’ but weak feeling that I couldn’t move forward at any speed – snails were passing me. My hands are clawing up, I never seem rested and I’m having trouble breathing.

I’ve never catastrophised about my health: I’ve been dying, and have shrugged it off (thank you Pancreas and Gallbladder) – I don’t think ‘it’ is going to be the worst thing. But my current state really has me a little freaked. It may be the build up of stress and worry: months of DWP, Doctors visits, hospital appointments etc. and the rapid approach of my WCA. It could be. But never before, even in the extreme of stress (and I have seizures because of stress) have I had such difficulty breathing. Anemia makes my breath difficult, but in a different way. I’m also coughing. A lot. Deep, big coughs that make my spine and ribs hurt (Thank you Costochonditis) and that is making it difficult for me to sleep. I may actually have to go and see my GP for something completely new. I really hope it doesn’t turn out that living in a dusty shit pit with constant building debris is causing me to have lung problems, because that would be embarrassing.

An Interlude: Mabuse

I’ve included the picture of a Princess above because it makes me think of September and University. I fell in love with this very small image while studying. The National Gallery (London) was nearby and this attracted me. I love portraits with allegorical symbols in them (here an armillary sphere – a model of the celestial globe with the equator marked), I love portraits where people move beyond the frame, and I love the un-idealised images made in ‘Northern’* Europe during the Renaissance. So this is a trinity for me. But I also just like her face, a very young girl dressed up and presented as a learned adult. Unimpressed like so many children, and enigmatic, as all unformed characters should be. Gossaert/Mabuse isn’t as well known as he should be. When not painting delicate, mysterious portraits (‘mysterious’ is too frequently used these days, but I apply it here because I do think his people have a distinct ‘otherness’ about them) he created very striking representations of Mythological subjects, and quite charming Religious scenes. Give him a google sometime, or look out for him in any galleries you visit.

And we’re back.

So, I’m achy, sore, tired and breathless. I seem to have a headache I can’t shake, I want to eat a lot, and I can’t poo (what a surprise). I’ve had to put a tube bandage on my right wrist. But it’s not all bad. My Mental Health Nurse called today to tell me I’m getting new meds. I don’t know what they are, or how to take them – I’m going to phone tomorrow to find out. I managed to get the dustbin bag that’s been haunting my bedroom down the stairs (I may have rolled it… or kicked it), I sourced the nibs and bits I need for my course and a new Audiobook arrived for me (Portrait of a Lady). Now, if I could just have a shit…

*The Northern Renaissance: it’s not really ‘North’, it’s just not Italy. I think the Renaissance should just be The Renaissance and The Italian Renaissance/ Renaissance in Italy, rather than The Renaissance meaning Italy and The Northern Renaissance meaning Spain, Germany, Austria, Poland, Holland, Belgium, France….But that’s just me.




Anxiety the Mystery Cat

Anxiety’s a Mystery Cat: he’s called the Hidden Paw; For he’s the master criminal who can defy the Law. He’s the bafflement of Mental Health, the Psychiatrist’s despair: For when they reach the scene of crime – Anxiety’s not there! (Apologies to T.S.Eliot)

I’ve been having weird dreams. Since I returned from Holiday, I’ve felt ill. Almost like flu. My appetite has disappeared, my guts have hurt and I’ve had constant headaches. I developed pain in my knees and ankles, and thought the blocked face feeling and heavy arms were due to Diclofenac gel. Last week I did two busy things: went to John Lewis with my Dad to get carpet samples and look at curtain fabrics, and signed up for an Adult Ed Course followed by dinner with my Brother. I’ve been wiped out ever since. I’ve not washed, my hair has the glassy sheen associated with well oiled leather, and on Saturday I did a poo that looked like a pile of dead eels, but I didn’t feel better. Sunday was sleep. Monday was sleep and Anxiety: the carpet measure people were coming Tuesday Morning and my Dad wanted me to have chosen a carpet. We’ve had the samples a week. I’ve spent most of that week on my back or worried about the Man in the Gouty Chair. Monday I was so knotted I felt like I was floaty in the noggin. Only after telling my Dad that I would not have chosen the carpet by Tuesday AM did I feel ‘normal’. I went to bed very early, woke at about 2.30 am Tuesday, went and got a tea and then tried to sleep again, but failed. Sore joints, sore face, bad thoughts – I didn’t get back to sleep until 8am. Tuesday again was Anxious: waking at 11am my hair was still not washed, but I managed a shower and a very slow, painful dress. The carpet men had been. My Cousin was coming to take my Dad to lunch, I was meant to be volunteering – just me and someone I don’t know, rather than the usual 3 people- and after his lunch, my Dad was going to visit my Brother, so I’d have to make my way home.

The day was hot. Very hot. The afternoon was hard work – heat and lack of staff in the shop. Strange man last thing too. Exhausted – burning eyes and limbs. Caught up in a conversation with someone when I want to go home and get some food. Went to shop, bought food, went home. Tried to think good things on way. Push exhaustion back. But all I could think of is ‘Where did I put my Mum’s Oramorph?’. Oramorph- oral morphine – has, since my Mum’s death, been my comfort blanket*. I reckon I could keep enough down to turn the light out on Bowermanland. My usual Suicidal Ideation involves hanging. I know a lot about it due to my long held morbid interests. I know you have to get drop right, I also know that I have thick, powerful neck muscles, which would mean I’d need more than just a drop to outright kill me and not leave me stuck paralysed or choking to death. In these visions, I am not a vast undignified mass, I have grace and I don’t soil myself as human’s do at the end. That is part of the reason why such fantasies are comforting – because they are fantastic. But the Oramorph File is not a Fairy Tale.

I got home tired. And down. The Down you get with exhaustion. Heat doesn’t like me. I ate – cheesy bread and gelato – healthy! Dad came home and said something – asked about the shop – listened to my grump – did the usual thing of telling me to leave ‘cos I’m not paid. Always the same answer**. Told me something about my Brother and his brood. I went to bed and couldn’t think what was causing my mood (usually after food I perk up). Then I remembered: Wednesday I had an appointment with a Mental Health Nurse. That was the bugger causing the trouble. I wanted this unknown person to help me. I wanted them to help me in a profound and a more direct, quick, way. I’ve been harming myself since January – new in my life. I’ve been made to reduce my Citalopram and have had new meds suggested. And I’ve been thinking constantly of Suicide – the fanciful kind. I want this person to help me with these things. But I also want her to support me with my ESA claim.

The Fear of being thought a Mental Illness Fraud was nagging me. Of being thought a Fraud generally. Seeing a new person scared me. And also, not knowing what help I want. Not really believing that there is help. You see, when I lost my ESA, I lost a tangible sign that there’s something really wrong with me. I’m 6ft tall, I’m a big girl, I’m opinionated, educated… unless you’re very good at looking at bodies, you won’t see anything immediately wrong with me. Yeah, I have bad skin and my eyes go in different directions and the slowness of my walk could be attributed to my being unhealthy/fat. But those are superficial they don’t make me disabled. They don’t make me need help. Many people*** believe that if I just got more sleep and lost weight I’d be fine. Having my ESA was my proof. But when it went, I began to doubt myself. When my Mum got really sick, that magic thing happened where I became invincible. I could stay up 24hrs with her, react properly to stress, care, clean, cook… all the things she’d always done for me. I even had to give her an enema. But it wiped me out. The physical and emotional, and it cracked me as only such experience can. When she was gone I was left with myself, a big mess of a house, and VOID.

I could not fight the DWP decision to remove my ESA in May last year, because the same week my Mum was given her death sentence and I had to shift my stars.

The Mental Health Nurse ended up being amazing. I told her the unvarnished truth, including how I have to empty my own bowels. At the end, she told me she was going to write me a letter for the DWP, and she was going to come to my medical – my WCA. Like that. Magic Fairy. I’ve never had such help, so immediate. I left my appointment and immediately began to worry. ‘What bad thing is going to happen to balance this?’ – I envisioned my WCA where everything goes wrong. Later in the day the Nurse called me to check on our plans. She’d written and posted the letter. Contacted my former Psychiatrist to get new meds prescribed, and also to get me on her books. She’d done everything. But I was still worried. I am still worried.

I’m running, pounding in my chest, on stress. I feel like I’m going to explode. I spent all of today (Thursday) in bed, then showered, ate. But the stress is still with me. Dad mentioned the fucking carpet again, and I had to control myself.

*I have never taken Oramorph as a fun-time drug. I have only ever had it in hospital. I currently have no idea of where I hid my Mum’s vast bottle.

**My Dad does not believe voluntary work is valuable because you don’t get paid. He wants me to be mentally healthy and to do things, but he’d have me quit this because of money. What I really need him to do is just listen and agree with me, as I do him. I need a platitude or two. I only talk to him about it because we must talk together. But he is either brutally dismissive, or not interested. ‘So leave then’ or ‘That’s it, hand in your notice’ is his answer to everything. He’s not very good at just listening for the sake of allowing me to talk. Which I’ve done for him for years.

***Mainly my Dad’s family. Over the years my late Gran and all of that brood have said this. Even my Brother has said it. My Brother being like that was one of the most painful things. One day I’ll tell you the tale of my Sister-in-Law and the List of Inheritable Diseases – and the ironic outcome. My odd-but-necessary behaviour (sleeping on the floor) is seen as ‘eccentric’ or ‘odd’ and also chosen. None of it is chosen – no one chooses to be too tired to get upstairs to their bedrooms, so they sleep under a fucking table.

I’ll leave you with this song about The Fear (Extreme Anxiety): https://www.youtube.com/watch?v=HxPu7XIX2Pc

I was going to write something else, but I can’t fucking remember.



The Gouty Chair

My Dad has Gout, a form of Arthritis usually associated with Port glugging Georgians. My Dad has not been a consumer of Alcoholic Beverages since he was in his 20’s. His vices – well his triggers for Gout- used to be strawberries, cheese, steak/beef and tomatoes. Gout, like Migraines, is encouraged by what you consume. Dad has had Gout since before I was born, from when he was younger than I am now. That is unusual. Dad also used to have Migraines. Terrible they were. Mum and I used to go out in the middle of the night to 24hr Pharmacies in Edgeware Rd to get pills for him. My Dad also had a Stroke when he was about 40. They didn’t know what it was, and they didn’t think Stroke because of his age – only much later did he discover after a scan, that part of his brain was dead. All of these things are connected by blood and blood pressure and stress. I inherit this from him (along with other things). He’s very sad looking with his Big Red Foot – like a deflated grey balloon. I’ve been prepping bowls of ice water for it, bringing him his tea and checking on him. When he has The Gout, he has my complete sympathy and attention. I remember once he was driving with it, and he got out of the car and vomited because the pain was so bad. With all the pain I’ve had, I’ve never vomited because of pain. I’ve vomited because of Migraine action, or Gallbladder action or Pancreatitis etc. but not because the pain is too much.

Dad no longer eats raw tomatoes, strawberries, cooked steak… but the Gout comes back. A few years ago when he was under a lot of stress at work (he only retired in 2014) he had Gout of different pain levels for months. Now it can come on quickly and powerfully. The bones in his feet and toes, and knee joints have been damaged from the Uric Acid that builds up in them during the attacks. Over the 30+ years he’s had it, his bones have been damaged, so now he gets more extensive areas of pain. I’m going to make him get trainers rather than the stout leather shoes he’s used to. I’m going to get him to rest his feet while he uses them – give them a good mattress to walk on.

This is his first Big Gout attack since Mum died. She was very good at looking after him, and more importantly, making him feel looked after. I am less good. I keep an eye on him – so much so he now gives me any medical letters he gets so I know for certain what is going on. I get the water etc. but I can’t make him feel safe and loved like Mummy did. But when I am in Carer Mode, I’m pretty fucking solid. Even if I’m desperate for sleep etc. (Ooo I’m such a fucking angel) but nothing can make him feel safe like that.


James Gillray: The Gout – hand tinted engraving 1799.

On a non-Gout, more selfish note – Boils. Well, Acne Cysts. My chin is currently a mess. Very scarred, covered in lumps, scabs, infections… I’m rather depressed by it. I’ve had Acne for 26 years. The only medicine that ever worked was one used to reduce my Testosterone levels, and it gave my Pancreas a spanking. Recently I’ve been stressed by the usual, not sleeping, eating badly… these things tend to show on my face. I’m hoping to catch up with sleep this weekend, or this week. But I’m also hoping not to attack my skin too badly if/when I do develop more lumps. Errrgh.

My WCA is finally booked for September 29th, and my Advocate can come along. Phew. Perhaps knowing my Advocate will be with me may turn my chin from the Himalayas to Snowdonia?

About Gout: http://www.nhs.uk/Conditions/Gout/Pages/Introduction.aspx – it can happen in your nose. Arthritis in your NOSE.

About James Gillray: http://www.tate.org.uk/whats-on/tate-britain/exhibition/james-gillray-art-caricature


The ‘Gouty Chair’ of the title: a Georgian self-propelled wheelchair for people with Gout. Gout was such a widespread problem that it inspired the first self-propelled chairs. Normal wheelchairs were pushed, but Gout was seen as quite ‘normal’ so it was accepted that the people with it needed to be independent and not pushed around (they were usually men who could afford a Port habit, and therefore had status etc. didn’t want to look weak or ill…). More women got Gout in the 1700’s because of their drinking habits: water in towns was not safe, so they drank beer and spirits. Also diet. Gout is on the rise again due people living, and drinking, and eating, longer. This chair is at Kenwood House, London.


Stuffed Crust Face

I am allergic to 2 things. Just 2. I know I am lucky. Those 2 things are Penicillin and Diclofenac. An anti-biotic and an NSAID. Having been unable to sleep on Tuesday night, early Wednesday morning found me padding to the kitchen to get pain relief gel. I grabbed the one most recently prescribed and rubbed it on my ankles, knees and elbows: the bits keeping me awake. I noticed it smelled really nice. Queue waking up 6 hours later with dead arms and hands that felt like the meat bursting through a sausage skin as it’s cooked, while my head felt ‘stuffed’. Apart from visibly chubby hands (being EDS I naturally have thin, boney, pointy hands which can cause strangers great pain), I looked fine. But fuck, did I feel rough. All the bites I’ve gained from animals this year were itching up a storm and my breathing was buggered.

I scrabbled around for an Anti-Histamine (I don’t have many, as I so rarely need them) I decided to read the gel’s box. It was Volterol and it was Diclofenac. Fuck me sideways. This was given to me by my GP, and handed to me by the Pharmacist who has a list of my allergies. Wednesday was meant to be an active day for me, but it ended up with me being in bed and actually sleeping with my hair tied back. Having returned to the bed at 4pm I woke at 11:30pm still feeling like shit. I feel like shit today. I still feel like my face is stuffed like a Pizza crust.

I’m very sweary at the moment – I’m very direct as well. I go through phases of this. I’ve begun writing well considered posts about lots of stuff, but I need to just slough it off and push it out. Before I went to Vienna I was suicidal, I was suicidal in Vienna. It went away a bit when I saw New Things. I thought *BINGO* I feel like me. But it returned rapidly. Stress bought it back – within hours of being home I was being asked about curtain poles and similar things. When was I going to sign up for that course I wanted to do? When were we going to choose the carpet? Monday we went to look for carpet and curtain fabrics. Tuesday I volunteered and couldn’t sleep. Wednesday I managed to poison myself. Today (Thursday) I phoned the Centre for Disability Blaaaah to make another WCA date, and went to sign up for a Calligraphy Course*, and then went and looked at more curtain fabrics, and had dinner with my Brother and Dad. And now I’m sitting here. I still have a fucking headache from Tuesday, I’ve not had a proper shit in 2 weeks, I got dizzy and nearly fell down an escalator and I couldn’t hear the lady registering me for my course ‘cos SSCD. I’ve not been in a learning situation since my SSCD was diagnosed and got worse this year, now I’m worried. I’m managing to write this because I’ve taken a Rizatriptan** and had some Kir Royales. My left ankle is throbbing and my chin is a mass of boils. I feel about 70 and I have no idea where tomorrow’s dose of Citalopram*** is.

Musical Interlude: https://www.youtube.com/watch?v=UZjDSnBhsWI

From Henry Purcell’s ‘Dido and Aeneas’. If you don’t know it, give it a whirl – an early opera in English. Purcell died of a cold he caught after being locked out of his house by his wife – he came home too late from the tavern.

I am still depressed, I am still thinking of suicide. And hurting myself. I want to smack my head on things and sleep is not helping. I have earache and I have no fucking idea of why they have made another version of ‘Ben Hur’. I have a Birthday Party on Saturday which will be full of cool, stylish people – truly, people featured in magazines and such like. I’m concerned for my Dad’s health and my Brother’s life (stressed-banker, 3 kids at fee paying school, gigantic mortgage) and I miss my Mum. Cleaning the kitchen surfaces and hob (not been done for months – I don’t want to die of food poisoning) brought her back powerfully. Urgh. Right, I’m going to bed. Tomorrow afternoon I’ll take a laxative and hopefully something will happen.


A photo from Vienna: Antonio Canova – Memorial to Archduchess Maria Christina – Augustinerkirche c.1805. Picture by me.

*Part of the 2014 State Sponsored plan for me to become self-employed – ended by my ESA being retracted. Started again with my low level ESA being re-awarded. I want to be able to offer a mixed bag of services to people – illustration, calligraphy, all personal, all hand made. I’ve done hand lettering before, but the script was my own, not one recognised.

**Migraine meds: if nothing else works to make me feel normal, I take one. They are very powerful. I should not be using them this way, but it was do that or try to sleep on the floor in John Lewis, or smash my head into things.





Limp like a Kangaroo

This is just an Info Blog, a share of information.


I used to have horrible old school crutches and they f*cked my back and shoulders up. Then I saw a video of futuristic ones and shared it on an EDS group:

The group responded by telling me of Smart Crutches and Flexy Foot crutch and stick bottoms (ferrules?), which you can put together for a fraction of the price of the magic sticks above. Apparently the Flexy Foot size you need for a Smart Crutch is 22mm (2.2cm) – thank you Genesta James for the information.

Smart Crutches: http://smartcrutch.co.uk/

Flexyfoot: http://www.flexyfoot.com/

Smart Crutches seem to be popular in the EDS community – it’s a good thing to know, and if I’m ever back on the bastards I’ll invest in some.

Share the information if you think it useful.


Cutting a Rug

Or buying a carpet. It’s been over a year since my Dad decided to redecorate the whole house. It was much better than coping with my Mum’s Terminal Cancer diagnosis, and having ‘something to do’ is very important to my Father. He only retired a couple of years ago, and used to work from home. He worked for over 45 years – from the age of 14. So, he has a work ethic as powerful as a jet engine.

However, he’s living with me. And asking me things. I now understand why my Mum did not have the house decorated in over 30 years. Dealing with Dad when he’s in ‘Get Things Done’ mode is tiring and provokes, um, symptoms (IBS, Palpitations, Costochondritis, Seizures… the wish to kill others). While I was away, he dealt with a long term house problem – a bay window curtain pole. Our house, built 100 years ago, was built cheap. The Bay Window in the Living Room is a piece of crap. Sandstone uprights and shoddy lathe and plaster. In 1980 when they bought the house, my Dad created a very clever system for hanging curtains – that was strong enough and stable enough to take Velvet Drapes. But that wore out (Damn you, Plastic!) and he and Mum decided they wanted a pole. But that caused engineering troubles. My Dad has solved these – reasonably elegantly. He was so chuffed when I got home and he could show me. So chuffed. The poles are in place, and now we have to get carpet and curtains. Carpet first.

I’d forgotten about what happened about 6 months ago when we went to get carpet. I’d blocked it out. But now we’re back at the Carpet Stage. John Lewis, samples, tension. Today I was meant to go to sign up for a course, and then meet Dad to get carpet. But I’m so tense (having been asked over and over when I’m going to sign on for the course and look at carpet and curtains and do we have the curtain pole finials and have I called the GP) that I’m only doing the carpet. To get Dad off my (twisted, painful) back. Dad doesn’t realise what he’s like. I know I’m annoying and that I say I’ll do things on a Monday and don’t. But he doesn’t see that as soon as he makes me promise to do something, it won’t happen. And that I’ll sacrifice my things to shut him up. I know as soon as we choose carpet, I’ll be nagged about curtains. The man has had lining paper stuck to the windows for 4 years, and now, because he’s put up the pole, we HAVE TO HAVE CURTAINS NOW! Being a human with human interactions is so tiring.

So I’m eating Omeprazole, drinking Gaviscon and waiting for the Diazepam to kick in before going to a very busy shopping area to look at carpet density. And I still can’t see properly. Sticky eyes. Bastard eyes. I’m glad I can see*, but my eyes are ‘the wrong shape’ – the balls (ha) are not round and are anchored in a different place than most – my pupil ‘floats’ in the eye and the eye is not properly lubricated. Currently everything I see looks like it’s got a soft focus lens on it.

If you hear of a 71 year old man being killed in John Lewis in London, beaten to death by a carpet samples book or large piece of lighting – I did it.

Y’See, normal things happen in a Wonky Life, and they’re just as boring to read about as when they happen to Non-Wonkys.

*I am very  very short sighted,  only have one working eye and my family has a history of Glaucoma and Retinal Detachment ( thank you Daddy – he also has one eye and had multiple Retinal Detachments, but he also stuck a screwdriver in there). I am glad and thankful I can see and have only had to have on operation on them. I can put eye-drops in on the Tube and in a moving car without a mirror.

Things wot I learnt on my Holidays

I need Art to live. I need to see it to live. And Architecture. I need to think about it and be around it. When I was a teen, this was absolutely factually true: I’d get suicidal and I’d take myself to the NPG or eventually Tate (Britain – it was one Tate then, I’m old). I’d spend some time with Mrs. Morris etc. and I’d come home and keep going. Last week I was sitting in my room on other soil, having seen some of the Art had changed my life 20 years ago, and I still wanted to kill myself. But then I went and saw new stuff, on my own, in my own time and I felt better. I must not forget that I need Art. It sounds like Poncy Twattery, but it’s true. I may be somewhere on the Autistic Spectrum, I’m certainly highly medicated in all kinda ways and for me the need for Art is real. For many they need Music, Dance, Sport, Cooking, Alcohol etc. for me it’s Paintings, Drawings, Sculpture and Architecture. My years of Academic study did their best to spoil it for me, and my Mother’s Death last year knocked it flat out of me – beyond my reach. I really did think, sitting in my holiday bed, that I had lost my ‘floatation device’ – my life preserver. But no, I just had to find Art new to me. God, I sound like such a Wanker. Eugh. Why can’t I be into Cosplay or small batch Gin? Why such a Damn stereotype. Ah, Fuck It.


Dante Gabriel Rossetti: Prosepine – or Mrs. Morris. As a teen, this floated my boat. Now, not so much. But you should not deny your past. 1350

Egon Schiele: Autumn Tree in Stirred Air (1912). Schiele moved me 20 years ago in a distant way. This time more so- I spent a lot of time looking at this in raking light (at an angle) to see the brush marks – I even bought a poster. And took non-flash photos. I hated myself.

I apologise for my Twattery, and there will be more of it. But I promise, I won’t judge your choice of Twattery.