I’ve been away for a bit…

…. cos life has been shit. But when I return boy, will there be a deluge. A deluge that takes us back to the beginning…

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Real Time Update Folks!

  1. I have begun both physiotherapy and speech therapy: as anyone who has had these knows, the first session is always an assessment, so I won’t know until the next what I’m doing or not. All I can say is that neither could see me weekly as they are so rammed with patients. This is OK. I learn physical things slowly.
  2. I have had some good sessions with my Bereavement Counsellor. To be frank, I thought we were going nowhere and I was paying for the slow ride. But recently things have developed. She’s left fielded me a bit which is good – got me to think about elements of my life that I had not for a long time.
  3. I managed to see a very busy show at the Royal Academy with my Dad, and we finished seeing it AT THE SAME TIME. This is amazing – I was not out of there 90 minutes after him. We had tea and cake and it was all OK.
  4. I finished my Calligraphy course and signed up for next term. I think this will be my last as we are repeating things and I need to start actually making. At the end of this term we did gilding and embossing. I shall show you pictures another time.
  5. My bowels have ground to a halt. I am ignoring them. Yes I am having to digitally relieve myself but I’ve been at that for a decade. I can’t throw a food based spanner in the works at the moment: I’ve not got time.
  6. I’ve still got the terrible terrible knee pain and also pain standing from sitting down, and sitting down again: my Coccyx is being a c*nt.
  7. My friend got assaulted in her own home, by a fellow female. She has just moved to Oxford and this is the last thing I would want to have happen to her. I am concerned for her. This was meant to be a fresh start. I’m hoping that she won’t let it affect her too badly. She’s involved the Police, but she’s obsessing about what potential mental illness the attacker might have (for there were already signs she was not totally mentally stable) which is not a good thing. I’ve been pushing her back into fretting over decorating her cottage (oh, for a cottage, with the potential for a stair lift…)
  8. I’ve been watching lots of films. Here is a list of films I’ve seen for the FIRST time lately: 2001 a Space Odyssey, Aladdin, Dr.Strange, Pride and Prejudice and Zombies, The Invisible Woman, Toy Story 2. I also have a vast pile of charity shop DVDs cluttering up space.
  9. I bought and painted boxes to put my sanitary items in, as having them lying around randomly was annoying me and embarrassing my Dad. So now they have a home. I also tore and repaired my coat. Practical stuff calms me.
  10. I’m going to be off loading a lot of bed linen on my Brother. I gave him his 1970’s original Star Wars quilt, and the Money Chicken – the only family item (heirloom) from the Irish side.
  11. The Aunt and Uncle I went to Russia with may both be seriously ill. He may have to have his bladder removed and reconstructed, and she has ‘a lump’ somewhere in or around her pelvic girdle. Since they found a long forgotten contraceptive coil in her and she’s 68, I don’t rate the diligence of her doctors so far. I hope the best outcome for both of them. For very selfish reasons related to my Dad: she is his sister, and he loves her very deeply and constantly.
  12. I planted peony and tuberose bulbs in the garden, and an anemone that’s been hanging around getting pot-bound since last year. If the bulbs come up, they’ll be the most blousy and obnoxious display – total floozies peonies, and tuberose are so filthy their scent used deployed to cover the smell of sex.

There we go. I hope you all had a good Easter/Passover etc. I slept. It were good.

On sleeping & resting & family/ Pills’n’Thrills’n’Bellyaches*

Originally written 19 January 2017

I have 2 sleep days, regularly, a week. By sleep days I mean days in bed until after 6pm. Today I had one. I couldn’t get to sleep last night, was woken some time, answered and then re-awoke at 6pm. Then slept again until after 1am. I can’t control it. But when it’s happening, I can make choices. So, at 6pm, I chose to try and wake up – I went to the toilet and sat up in bed. I wanted to get up because being in bed makes my Dad mad. He wanted me to do something today (passport photos) and I didn’t. He has a particular way of being mad that upsets me. Actually it worries me. My Dad has so much control in my life (he owns the space I live in and lets me be here) and can be nasty – spiteful like a child. He has always been this way, but before, of course, I had Mum. So I have to act in ways I don’t like and don’t want to, to keep everything on an even keel. But I can’t wake and function when he needs me to – I can’t even wake and function when I need to. Rather than wake, I went back to sleep. When I did get up

Pills’n’Thrills’n’Bellyaches

Originally written 26 January 2017

*Title stolen from The Happy Mondays – a band of my childhood thanks to my Brother. Fuck me backwards – the new pills are doing something odd to me when they want to. I’ve lost 2 days and 2 days I really, really needed. The sleep isn’t good. The dreams aren’t good (they aren’t nightmares, but they are unsettling). Nothing is good. And I keep returning peacefully to the thought of ending my life. I had a chat with my boss at Oxfam about this. He is the same age and physically he’s not fully functioning (childhood injury + years and years of lifting etc. in his jobs) and doesn’t have a lot of money. He concluded that if life is still this shit at 50, that’s it. I have the same opinion, but I am luckier than he is: I have support (family). In my dream state, this had become a reality. I had a few days to get my shit sorted before my life ended. It was odd. Though the decision was mine,

Addenda March 2018

My Boss at Oxfam left a year ago because of the mixture of poverty and bodyache. He decided to give being an artist a go. I have seen him since and though he still wants to be gone if life gets worse by 50, and doesn’t want to leave a trace, his body etc. has certainly improved for not lugging around a ton of books a day.  And I’m not joking about the number, it was calculated that on some busy days, he moved a ton of books.

His work can be found here: http://www.stanahrens.com

I own 2 of his works, not bought out of pity – in fact my Mum chose one before she died, I bought it and will hang it in her memory, when it’s up I may share it with you.

Talking to my Bereavement Counsellor recently has revolved around my Dad. She recently said that he sounds like a child, and I the adult. Not in action, but emotionally. Yes, he owns and runs the house, but our interactions are skewed, bent and not happy.  I told her of plans I made with him to see an exhibition and she noted the amount of effort I had put in to go – which he didn’t see and also didn’t value. I have a lot to think about. At what age will I stop being scared of my Dad? Will I?

I had my first Physio appointment this week. I was only booked for 30 minutes so we only got through the talking part of the assessment. In 2 weeks we’ll do the Physical. As usual the NHS only informed the Physio service of 1 problem in my referral, and this counts when assessing how much time you get in the service and how much money is spent on you. They only mentioned ‘knees’ so that’s all she’s meant to treat. But since the referral last year, my hips and back have become badly affected. So much so that I can feel the scoliosis hump in my back when I sit down: it hits the chair some time before I do. My Costochrondritis (?) has come back with a vengeance and I have had to remove my bra when out of the house several times. I used to be able to do this while seated and fully clothed but my loss of suppleness and stretch can be measured by the fact I had to to go into a toilet and take my jumper and shirt off to produce my party trick. Mutha Fucker I want my Party Trick Back!!

I’m finally wearing my new glasses, but they need some adjustment as they keep slipping off my shiny nose. Shiny nose is shiny.

Fuck, I’m exhausted. So, without editing I’m going to leave you with a link to a Happy Mondays song: Kinky Afro: https://www.youtube.com/watch?v=O8maBsuhHr4

and Step On: https://www.youtube.com/watch?v=6M0xdLO_bmo

 

 

On pain, deafness, love and shitting a hedgehog*

Originally written on December 10 2016:

Ugggh, people, I’m suddenly in a head-down pile’o’pain. Every.Fucking. Thing. Is. Sore. Particularly my shoulder and foot. I know why – I lifted something I should not have. While being over tired and under pressure. I’ve not been sleeping. I keep thinking of my Mother and my life. I get sad over my Mother, and a different kind of sad over my life. I’m still full of phlegm, have a cough and a constant acidity pain-burn round my waist. No sleep or amount of Gaviscon can seem to neutralise it. Eh.

I tried to do 2 things on Thursday – I tried to see an exhibition, and do some Christmas shopping. I am a Ninja at shopping. I can fucking shop. I know the layouts of all the major dept. stores on Oxford St. I check the internet too. But I’ve gotten sudden tiredness of late. I go out and get to my destination and suddenly I’m too tired or dizzy or weak to go on. Shopping or not. I love the glossy catalogues shops produce at Christmas with the ‘special’ make-up palettes, perfumes and shiny evening clothes. I love the fantasy life they sell. 10 years ago I last needed a nice evening dress for Christmas. Or to be neat for a work dinner. I’ve been invited to events since, but due to depression and low self-esteem, did not attend. But I still, age 36, dream of being the type of female who has to done a LBD, sparkly earrings and heels to go to a function, and being a female who can find a dress to fit, can walk in heels…

March update.

Re-reading this, I was whapped suddenly – about how similar things are exactly at this moment. I’ve been in so much pain. All the pains, including one I dread – gut pain. I had a bout of it 2 weeks ago. It was wind. It was caused by eating something too greasy. So I was careful for days – ate only soup. Then I got upset and over tired – I didn’t sleep properly between Wednesday and Thursday, then again Thursday and Friday – and I got upset. Upset about Mum, my Dad, and very  very lonely. I really over did it on Thursday – I had a good uplifting session with my bereavement councillor and then really over-did it, that on-purpose over-doing it that I do. I fucked myself up. So I was all the wiped out on Friday. And I bought the wrong food and stayed up until 6 am on Saturday watching good films and eating bad food. I watched The Odd Couple, and the original Adam West Batman movie. But I ate honey-roasted cashew nuts, pop-corn, satsumas.  So on going to bed the pain started. And it was my fault. And when it eventually went, I slept, until Sunday. Until today.

And today I had things to do. But it was nice. I met a friend and went to the preview of an auction – my first. Though I studied History of Art, and visit galleries, I’ve never felt like going to an auction. I have little money and the main auction houses in London are rather intimidating to me. Forget the buildings and the art. It’s the people. And the money. I didn’t fit at University, and I don’t fit in that world. But going to this tiny auction house and being open about what I thought (very open, very loud, very Asperger’s) was a relief. My friend brought one of her oldest friends with her, who I’ve heard about for 18 years and never met. And that was fine too. It was all fine. After the gut rot, and the sleeping. With the alopecia, and acne and new glasses… the pain and all the other things. It was a nice afternoon. Tomorrow I have my last Calligraphy class of my term, before Easter. It’s half 4 in the morning. I’m up too late, and tomorrow I’ll be tired again, and the week will be starting the bog of tiredness. But that won’t have made today less nice.

*Shitting a Hedgehog: when you do a vast poo that is studded with undigested things, usually nuts and it feel like you’re shitting a hedgehog.

… I could smile, for a while… and Whispering sticks

First written on 20 November 2016:

A mixed bag this session chaps.

Fighting the ESA fight has had me in a bubble. I have not been connected to much beyond it, and I have not been apologetic about that. It has taken 11 months of my life. Now I’m out of the bubble and there is so much shit to sort out.

The House – Our house is no multi room mansion. It was big enough for our nuclear family when we were young, and at one point housed 4 adults and 3 children when my Aunt and her family moved in with us. My parents moved in about 1978 or 9. They had a lot of work to do to it, and once it was done fully, in about 1988, they did nothing to the property until 2008 when the loft was done (and I was moved there).

Whispering Sticks

Written 27 November 2016

That’s what I sound like. I have no voice, quite literally. It’s a bit nice. Christmas is apparently coming. There are shiny things everywhere. I love the free Christmas brochures that department stores send you, or have lying around. It’s like shopping without leaving the house. You can take them in the toilet with you – shopping on the toilet.

Addenda from February 2018:

The house is still not ‘done’. Since Mum died we have finished the 2 rooms that were happening when she left. And have started and finished a 3rd. We have the hall floors and the dining room to do and then the kitchen. I’ve been trying to clear the dining room, but I keep getting ‘ill’ – either physically I can’t do the work because of my back and knees, or mentally I fall down a hole, or as at the moment, I get a temporary sick (I have a chest infection that won’t fuck off). I’m really doing it on my own. My Dad just sits or helps other people do things. I moan about this, but it’s much better than his bull in a china shop attitude which would end with him throwing all my things out and not doing anything really helpful. (God I’m a moany git).

I still have Dysphonia, I’m still waiting to see a Speech Therapist. I still can’t sing. Which upsets me in the way that makes me not talk about it in real life. I was never a great singer, but I could sing – I had a loud voice and could tackle a hymn. Now I can’t. Knowing I can’t sing in church upsets me in a base way, near my core.

Christ

Blood on Satan’s Claw or An Episode of Anxiety

Originally written 26th October 2016:

Every month I go to a film club in the East End of London. It’s theme is ‘Folk Horror’. So far all the films I’ve watched have been classics I’ve not seen. I was introduced to it via my boss at Oxfam. I really enjoy films – moving images of all kinds- but music videos and films have been a Big Thing in my life. Hammer Horror movies were a stable of my childhood. I suffered from terrible anxiety when I was a child. I could not sleep. I’d be either scared of not sleeping and being late for school or just plain scared*. So I used to come down stairs about 12am to see my Mum in the kitchen. She’d find an old movie on ITV or Channel 4 and make me a fry up,  she’d do her ironing and then we’d go to bed. My Mum had no problem with me seeing such films because she believed, rightly, that I’d see they were not real. The only films I could not watch were Mummy movies because I was terrified of Egyptian Mummies (more of this in another post). She’d not let me watch anything like the Ridley Scott ‘Alien’ films, or the 1980’s ‘Fly’, but old films were ok.

I’ve always suffered from terrible Social Anxiety. Social Anxiety in my case is a cycle, I’d be anxious, get up courage to be social, and then get shot down or have a horrible experience, which would add to the anxiety. But I got to an OK plateau and was fine for about 6 years. Then in 2012** I began to get anxious occasionally, and then constantly. I’d go and do things, but only with strangers- so I’d go to classes, or volunteer- there would be social interaction, but if someone went ‘wrong’, I could walk away. The people I served in the shop were a 5 minute interaction, my College classmates were all older people, who were just kind and ‘grown up’. Last year – my Mum’s sickness and my reaction to it, and the loss of my ESA*** – knocked me back even further. I stopped communicating with friends, stayed in and started having terrible episodes of anxiety  randomly. I’ve not been to Birthday or other parties, even for or with people I care a great deal about. In place of this, in a desperate need to be sociable – to talk to people – I began to attend film and performance nights where everyone was a stranger. However, this has now become a problem. The performance nights (comedy, music etc.) ended, so now it’s just a monthly film night. I promoted the night to keep it going – telling friends via social media. I didn’t want the numbers to drop and the event to end (a very common thing in London). However, this has caused me a massive dose of anxiety. I don’t know who will be there, and if I will know anyone. I prefer to know nobody, than to have social surprises sprung on me.

Added 2018:

*I think it was constant terror of my Mum dying. She had cancer first in 1987 when I was 6-7 the year after my Gran died of the same thing.

** I had Pancreatitis 4 times and nearly died. I think this had something to do with it – the pain was crippling and happened suddenly, including on the Underground where I ended up laid out on a Tube platform. Once the pain passed that day, I carried on to meet my partner, but he called to cancel. I went to Liberty to look at pretty things instead.

***A most terrifying thing. Imagine having your legs chopped off in front of you – it felt like the movies portray that. I still live in terror of the day I have to go through the ESA thing again.

I stopped going to this event.  I have even stopped going to my local film night. My anxiety levels are currently too high to be around people I know. I’ve started talking randomly to strangers – I know that anxiety is how these behaviours begin. I’ll soon be the person on the bus who talks to you when you don’t want them to.

Mistress Quickly

I don’t know where the title’s from, but I think she’s a character in a Shakespeare play.  Two things my Brother’s and Sisters. Two things. I started a new medication – Pregablin. Only 100mg a day in two 50mg doses. The first day it made me sleep – boy did I sleep. After a full 100mg dose I was out for a solid no-pee-breaks-or-liquids 24 hours. This is the med I’ve been putting off using because I needed my life in some kinda balance. But I did it, and it worked great, until life decided to throw me a curve ball. Contemplating writing it makes me angry. Childish burning tears angry. My Dad is going out with someone. A Biddy from Marks and Spencer’s coffee shop. And I’m angry. I’m angry for 4 reasons. Let’s be blunt, I’m angry that he’s going out with someone after my Mum, when I am still in such deep mourning for her I can’t imagine ever being happy again (bereavement counselling is not really working). I’m angry because he said he knew she liked him, he saw it coming and that he was not going to do anything- he wasn’t interested- (I’m made even more livid with the fact he shared this with me – discussed it with me, and then went back on it). I’m angry because he has been helping this lady a lot lately (this I don’t mind) but when I’ve needed help, I’ve never had it. Not in the same way. He’s helping her get a new flat etc. – when I’ve needed such help in the past, he is not understanding – the b*stard wouldn’t even help me get through my degree (but he helped my brother… still does though he earns a quarter of a million pounds a year). Part of his reasoning for helping the lady is that she is ‘silly’ and ‘has nothing’ and ‘can’t help herself’. Ok. I see that, but again, when I’ve asked for help – I’m told to do it myself, or I’m told off… you see where I’m going*. And I’m angry because I’ve spent the last years trying to sort the house out, doing everything I can that he asks. I’ve been ill a great deal (I currently have a chest infection, and I can’t walk properly – waiting to see a physio), and I’ve totally lost contact with the outside world. I have no friends left in my city – they’ve all left. I’ve put all of my energy into what he wants and keeping myself sane, and I’ve lost my life. Yet he carries on, and finds a new one. At this moment, all I can see is his selfishness. The light was shone on it the other day when I spent an evening washing bed linen and clothes to be sorted and thrown out. I cleared so much stuff from one of our ever filled rooms, and then he nagged me about something I’d not done while sitting in a chair eating something. Yeah, you sit there. You sit there and magically expect everything to happen around you. You moan at me for everything, while you throw your newspapers on the floor and your coat on the couch. I can hardly bend to wipe myself on the toilet and I’m not yet 40, you’re 74 and can spring out of bed at 8am. I feel I’ve been so stupid trying to get on with him and do everything to keep him happy since Mum died, when it means nothing. I’ve given up lots of things in my life and he just keeps going in his bubble. But, I’m still dependent on him. If he got mad at me, my life would be horrible in every way. And if I get angry at him, he has much to throw back in my face. He can be vile and he knows exactly how to wound.

So the Pregablin is working. I can’t imagine how anxious I would be without it. Yes, my hair is falling out more. Yes, I still can’t poo. My eyes are dry and the skin under my armpits and down to my elbows is burning (what is that, allergic reaction?) while I have a red rash all over my neck. I found out I don’t have Bowel Cancer (whoopee!). I keep eating only crap now, mainly chocolate – I’ve not had a vegetable for a week. I don’t really know what is going on with my life. I have Calligraphy classes, counselling and volunteering. That’s it. It sounds like a lot but it adds up to 7.5 hrs a week with people who aren’t my Dad. And I don’t talk during 2.5 of those.

This moan has been brought to you by Depression, Anxiety, Anger and the letter RRRRrrrrrrrr.

*Mum always said Dad wanted me to be the type of girl who batted her eyelashes to get what she wanted – helpless little thing. Which I was not. This lady doesn’t do that, but she does the 60+ equivalent of it.

Bone Jumble Tomb

Written on October 22 2016:

Ouuh! Boof! What a time we’ve been having here in Bowermanland. What. A. Time. We’ve got a lot going on, or have had. But first, the Bone Jumble Tomb of the title, or at least a detail of an early 17th century tomb in Holy Trinity Church, Guildford. This is not even the main bit of the tomb, just a bit of the base: gskulls

Still got some polychrome on it and everything.

I include the picture because it’s pertinent. Next week will be 1 year since the death of my Mother. I took this photo in March or April last year, in Guildford. My Aunt, my Mum’s sister had just died – it was before her funeral, or just after. Mum, Dad and I were in Guildford with my Brother and his family, when my Dad’s extended family turned up. It was a totally unique day. I showed Mum the old Alms houses, and the churches – my things. She was puffing and tired and I knew there was something wrong other than her mourning her sister. We all knew. So this image was taken after her Sister’s death and before her own death sentence was known. I’m still interested in such sculpture, my interest in death has never changed. I have been since I was very small and most of my family started dying. I saw my first dead body age 5 or 6. My Granny. Our tradition is to view the body before the funeral. So I kissed the corpse in it’s box. I’d seen her hooked up to chemo, lose her hair, wear a wig, wear a little turban, grow her hair back (completely different than before – grew back curly) and then see her no more. Next was my Aunt. It went on like this for a few years. Then years of calm.

Nagging with Rachel Whiteread

An up-to-date post. All medical I’m afraid*. My basic conditions lurch on, with the added thrill of extreme knee pain. I took myself to my dermatologist who, searching from scalp to foot, found lots of things going on. Seborrheic Dermatitis at one end and Athletes Foot at the other – rather proud of that – having a normal thing that normal people get. The only time anything Athletic will be associated with me (though I won a medal for the slow bike race in primary school). She also confirmed that my hair is falling out good and proper – not the usual vanity ‘my hair is falling out’ ‘no you lose X amount per day…’ type thing. So I have many unguents and creams to apply, and she did a blood test.

My bowels were working really well – post ‘something shoved up there’ – and I decided to adopt a squatting position on the bog to help. I’ve not invested in a ‘Squatty Potty’ yet, but used some boxes I had available. But a day in bed and without food has put that back to ‘trying to shit bricks’.  I really, really want it to go back to the 5 days where I didn’t have to help myself poo. Yes, it was annoying going more than once a day, but I felt better. My skin was definitely better after the chemical clear out. I may investigate monthly doses of laxative to keep it going. Not harsh, just a regular, light dose to keep things going. I’d like to restore my general body function, and getting my anus and bowels to do what they’re supposed to would be a start.

The first of my two annual sore throats appeared – I always get one in January and then either in September or later. This one was presaged by sore glands and coughing. It’s not developed fully yet, or it’s going easy on me. But it’s done its usual wonderment of making my pain go away – so I’ve had 3-4 days of not being able to swallow, but being able to walk…. fucking immune system. I’m still feeling heavy of head, and I’ve been producing solid lumps of mucus the shape of brains…. zzzzz

I have been making myself eat. A potato a day. With beans, veg and yesterday some meat. I’ve got to eat and not just crap. The percentage of crap is quite high still, but I’m not getting hung up on it. Speaking to my bereavement councillor made me realise that circumstances came together to make me get upset about being the size I am. Well, upset about being me, in fact. I’m open to self-harming behaviour, but I’ve never had an eating disorder. However, I believe I definitely passed into the territory. And, I could easily have gone very far down. But, my body having so many other things wrong has saved me. My joints take any chance they can to fail, and exhaustion/ depression is my constant, but it can easily rise – I have to eat to stop these things from really getting a grip. I may want to abstain, I may enjoy not eating and throwing food away, but the big important bits of my body cut out before I can really get into trouble. I suppose I’m lucky. Now I’m going to look into, properly, cooking things I want to eat, and using my wish to control everything, to control that.

*I was lying, here’s the art bit:

I went to an exhibition of Rachel Whiteread sculpture. In the UK, Whiteread is famous for casting the inside of a 2 story house in concrete in the 1990’s. Internationally she’s known for creating the Holocaust memorial in Vienna (apt to be reminded of it at this time of year). Most of her work is casts of objects and many people dismiss it, or explain it, as just casts. Anyone can cast something. Anyone can make a mould… Well apart from that not being true there is the question of what she casts and how. That is where the magic happens, that spark and flitter of chemical reaction, that makes her work art, and Whiteread an artist. Much of her work is negative space made solid. Air, made solid. Things you can’t see and feel in normal circumstance. And then there are the materials she chooses. Her famous house was concrete – was because it was torn down by the local council the same year it were finished. English councils are so forward thinking when it comes to preserving art and heritage… Many of her large works are plaster or concrete through necessity – she wants them to last I imagine, and these materials do. Also they capture enough detail to satisfy her. But there are also magic objects in shimmering resin, benign wax and vast coarse papier mache- the inside space of a hot water bottle, the negative space under a desk and below a chair – that fit together to leave the ghost seat of a sitter. These objects I found unexpectedly tender. The life-size inverted staircases were an exciting jumble of jagged shadows and types of grey. Constant changes in scale that are not dictated by how much money she has to make a work (the destroyed House was an early work) but by her interest and imagination.

It was a very satisfying show, I am glad I dragged myself to it – made the effort. If you don’t know her work, I suggest you have a look.

This is the show I saw: http://www.tate.org.uk/whats-on/tate-britain/exhibition/rachel-whiteread

Oh, and I found myself very drawn to her works on paper. They are not just working drawings for sculptures, but interesting experiments in themselves. Though not listed, I think she may use gesso (plaster made of chalk and rabbit glue) and Snowpake (TM) in her works. Their texture was shiny, shiny opaque pools with delicate colouring. I returned to them 3 times. Only the hot water bottles (Torsoes) and jelly-like resin houses and stool spaces got more of my attention. Next time I’ll post some images….

Baroque

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