The Business End

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

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

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

Eurrrrghhhh.

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

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

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

 

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A Punch to the Face, Igor

With Ehlers Danlos Syndrome and the pain I get from/ with it, sometimes something happens physically to pull me up. It feels like this: https://www.youtube.com/watch?v=aRq1Ksh-32g

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

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

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

marty

Marty Feldman as Igor in Mel Brooks’ ” Young Frankenstein”: I sing and dance like this too:  (the one on the right – though I do know the words and tune to ‘Puttin on the Ritz’ and before I lost my voice to Dysphonia, used to sing it quite a lot. I did used to sing in choirs and bands…):https://www.youtube.com/watch?v=w1FLZPFI3jc

A Rumble and a Rabble and a Tumble and a Babble

Enter stage left, followed by a bore (your shadow).

Being a depressive is boring. Very boring. It’s boring for your family and friends and the universe. It’s boring for your doctors and teachers. And it’s boring for you, or I – the person with the parasite sitting in them, fucking shit up without a pattern or a care in It’s world. People want to find patterns, they really, really want depression to be a rollercoaster, even if it’s a ride as long and complex as the Hadron Collider. They want there to be something to trace and follow, to overtake and conquer. In my 31 years of experience with the Pork Tapeworm of Depression, I have found no easy pattern. The disgusting gnawing fucker always takes me by surprise. And since I’ve been living with it 31 years, I am an expert on it. I know it better than I do my own arsehole, and I’ve been wiping that longer. The most surprising people get depression. We are always so *surprised* when the beautiful, the rich, the successful admit, with downcast eyes, or direct-to-camera glares, that they have a Black Dog which they are ashamed of (it shat on the carpet again). Fewer people are surprised when people like me have depression. Indeed today I was told that having depression was what I ‘do’. ‘Well, it’s not surprising, is it…’. Not surprising. Why? Because I’m ‘different’. Not special, don’t get me wrong. But different. I’m sick. I’m ill. ‘You’re different’. So we are surprised that the beautiful, rich, successful get depression, but not the ‘different’.

I am different. Genetically. I am literally different. I am an amalgam of 5 percents. I have a list of medical phenomena going on in my body, most of which affect only 5-10% of the population singularly, and very few people as a collective. In fact my body has helped more people be diagnosed with these conditions because I took part in medical best practice consultations and my body does not present in the typical way for my conditions – it’s a contrary bastard that way. Since before I was a teenager, I have had to stand naked in front of Professors and medical students being prodded, poked, scanned and x-rayed. This continued until I was 18 when I said ‘fuck it’ and gave in to the break down that had been long brewing. I’d had 6 years untreated with a twisted spine and 6 years untreated with a frozen, swollen ankle I could not walk on, 16 years only being able to see out of one eye, 7 years of all body acne, 3 years of Trichotillomania, and 12 years of Depression. I could hear dog whistles and could not bear being touched, or washed. I could not read properly (Dyslexia) but everything I did read, or see or hear, I remembered and re-played over and over and over. The Cancers and deaths of my Granny and well beloved Aunt, the bullying by my sibling, cousin and nearly everyone I met at school, the first Cancer of my Mother. The catatonic state my Dad went into when he lost his job in 1994, at the same time as my Brother developed an expensive drug habit at university, and my Mum had to work full time. I broke a bit then. I was chipped a bit then. I was definitely ‘different’. I am definitely ‘different’. But not in a fashionable or exciting or sexy way. Nor in the sad statistic useful to the government way. I am not a drug user/addict or an alcoholic, and I do not fuck my way to happiness.*

Working Class Dyslexic Depressive (with suspected Autism), Chronic Spinal Pain, Scoliosis, EDS, IBS, Tinnitus, SSCD, Piles, No Gallbladder and a degree in Art History from a Well Known College in London seeks to be Depressed in a Surprising Way. For a Glamorous Reason. Like the Sexy/Tragic Heroine of a book. Not because she’s ‘different’ and it’s to be expected. Not because it’s inevitable, and boring in being so.

Postscript: I had my big KABOOM breakdown at university. My body went haywire and my mind could not keep going with study while dealing with it (as it had a GCSE, A’Level) I was diagnosed with the EDS, and even while completely bonkers and taking medication that would cause me to lose my Eidetic (‘Photographic’) Memory**, (oh and wearing a neck brace from a car accident) I took part in studies to help people understand EDS. At 22 I was again prodded ‘do you mind if a student sits in…’, and part of experiments (Pain Management courses, National Review for the Treatment of Adolescent Scoliosis – I represented the minority of my age who have not had surgery) for the benefit of my Doctors, their students, other people with my condition and Mr. Kite. Mentally I’ve not been the same since. My ability to concentrate and remember has been scattered to the winds. My depression has grown as more bits of me have failed, and more life experiences have happened – the usual.

*Do Not Misinterpret my opinion of alcohol, drug and sex use. You are free to do what you want with your body. I am discussing/ highlighting how depressed people who can’t work and are disabled physically and mentally are depicted by government studies and in the press. Too frequently we are represented as turning to ‘morally bad’ practices to make ourselves feel better, but practices that make us a drain on the community, on all the ‘normal’ ‘hard-working’ people who pay for our NHS treatment and our DWP money. It’s OK to be an alcoholic, an addict or whatever ‘negative’ thing is the flavour of the month if you have money and if you are the right ‘type’ of person. Then you can’t be used as a statis-stick to beat other people with. You can’t be fought over and mauled by people for a headline, a byline or a speech in Parliament. Theoretically, I don’t fit that. I have middle-class taste, a middle-class degree and a working-class background.  I don’t drink even monthly, I’ve never smoked, I’ve never taken drugs that were not prescribed for me, and I damn well wish I could ride myself into a orgasmic oblivion. I’m ‘different’ you see. I can’t even get the ‘self-medicating’ stereotype right.

** I even lost the ability to read, which since I had 2 more years of university to do, made life very difficult. I still have periods where I can’t read. Words run around on the page, or mean nothing. I had to work very hard to use my memory to remember the shape and meaning of words so I could read them – that was how I learned and studied. And then poof! it went. I had to rely on hearing things. Now that is gone – my reading has slowed down greatly and my vocab has shrunk – I just can’t grab the word I want from my memory, and my speech has withered. This has hurt me deeply, and I lament that I cannot converse as once I did. I was very good at remembering things people told me, and then talking to them of them the next time I saw them – 2 or 3 years later. I remembered babies, dogs, cats, partners, even favourite foods – on first meeting. But now that is gone, and being deaf, I am left behind in conversation, with only my own anxious voice in my head. That worm again. Nibble, nibble, crunch, crunch.

The Little Eden: Ice-Cream and Italics

Today Bowermanland returned to Calligraphy class, and remembered that she finds it difficult. Holy Hell am I sore. I mean I was in pain doing the class, I could barely concentrate because that happens, the lack of concentration, but now I feel beaten with sticks and my thumb is not co-operating with the rest of my right hand. Hunger was part of the problem: I’d not eaten properly over the weekend – only cakes and biscuits. Tiredness was another: I slept all of yesterday, but it wasn’t enough. The trip to Oxford took a great deal out of me. On Saturday I nearly passed out in a shop, and ate shoddy food stuffs when I got home because my body was craving food in the way it does when I want to faint. Feeling faint, or seizure-y is the time when I am least in control of myself. My body wants to do something and I, ultimately, can’t stop it. It wants to be on the floor, it wants to jerk around, it wants me to eat sugar laden shit. And it won’t stop until it does as it pleases. When I’m in the grip of these feelings, I’m like an animal. I get rude and furious, and then completely removed from what is going on. The fact that these episodes do happen in public, and that they can render me unable to speak is not a good thing. I’ve not felt faint as I did for a long time. And the feeling was very strong. I know that the days away were the spark, but also carrying lots of heavy things did not help. I had an urge to do things. To achieve – a continuation of the burst of happy energy I gained from visiting the Ashmolean. But my tank was empty. I’m very lucky the human version of the AA didn’t have to be called because I’d not topped up my oil.

I mention ice-cream because I’ve just eaten a tub of Haagen-Dazs. Sometimes this has to be done. I’m still bleeding, so I’m blaming my hormones. I had lunch/dinner at the college I attend for calligraphy, but I got angry and frustrated on the way home (I had to buy some things for the house) and prayed the little shop near the station would be open for me to get ice-cream. It was, I did.

House stuff is going to feature a bit more than usual. For Lent, I did not give up anything, but decided to do something actively: I decided I would clear the room Dad had asked me to clear, my old bedroom and then study, which had been filled with successive crap from my Gran’s House, the Loft and then the Great Destruction of 2015. My Mum was an excellent packer of things, and she filled the small room with a house worth of items. I gave over 20 bags of clothes and accessories from that room to charity, and threw out bags more. I made myself physically and mentally ill going through everything, and once the room was empty, my Dad destroyed it, ripping off wall paper and tearing up carpet. I have an awful feeling he’s booked some people to come and design wardrobes for it. And a secondary awful feeling that he’s booked them to come on Wednesday morning, the same day I have a Psychiatric appointment. My Dad is clueless as to what stresses me out. My appointment is at 12 noon, and from what I gather (he’s not actively told me) the people are coming at 10am. So they’ll be here as I’m getting ready for my appointment, and I will be called in to talk to them. So I’ll be super stressed. My appointments obviously mean nothing to my Dad. He was very anxious for me when I had my tooth removed 2 weeks ago. He took me to the hospital and waited for me, and let me have the next day to sleep without being disturbed. But obviously that is an absolute physical thing. A visible, real thing. Whereas my Depression and mental illnesses various (Anxiety, Trichotillomania, Self Harm, Suicidal Ideation…) are not. Even writing this makes me tired. Nothing changes.

The Little Eden is my mental joke name for my garden. Few of the plants I put in last year survived. Either my cousin removed them by accident when weeding, they got eaten by weeds or they didn’t take. This year I’ve decided to take a different road to the garden. The raised beds (about 4ft 6″) are being carefully dealt with. The one in shade has been planted for the long haul: yellow and purple Hellebore, white Anemone, and a Spurge. Anemone grew on that site before, and I chose a Spurge because it plays a part in one of my favourite historical novels*. The raised bed with full sun is getting a totally different treatment: I’m going to sow wild flower seeds in it. I’ve never grown anything from seed, not even the childish Sunflower, so I’m very excited. I watched my former partner grow lots of vegetables from seed, and some flowers, and now I want to do it. I’m going to prepare the bed and sow directly in to it, a mixture of cottage garden wildflowers. Separately I’m going to grow Sunflowers and Lupins – in trays indoors before putting them out. This is all an experiment. Last week we planted the Spurge etc. and replaced some of the dead Lavender in the garden. For several days afterward I felt very calm and happy, and I realised that I had not thought of many of the things that make me feel sad or suicidal. When I was a teenager, I planted random things in the garden (2 of which survive – including a red Camellia, now 20 years old). I used to go out and water them and look after them, and it helped me. I was in control of something, and had something living under my eye. All of that feeling was lost or removed over time, but now, I feel a little bit of it coming back. I’m hoping that by growing things completely – from seed – I will feel more of that. Yes, it is a sense of control over a living thing, which could be considered bad. But, it is not an animal or another human – I don’t have 20 rabbits or ferrets, or an unhealthy baby – they will be Cornflowers, Poppies and other such things. If my work pays off, I will be adding things to the world. If not, there will not be a negative – a loss – only a waste of my time.

Orchid Watch: Orchid 2 is flowering and growing a new leaf. Orchid 1 is finally growing a stem to replace the original 2 flowering stems it came with. I’m waiting for it to get long enough to be trained up a stick. It looks like they survived the re-potting and other disasters. I recently moved a Myrtle bush from a pot to the front garden – it was stagnant. I looked after it over winter, made sure it didn’t freeze etc. but it looked like it was trying to die on me. I’ll keep you updated about that as well.

*’Venus in Copper’ by Lindsey Davis – a historical crime novel set in ancient Rome. Spurge is toxic, but it’s everywhere as a decorative plant, in London. Particularly on Roundabouts and council properties…

 

….Wake up with smelly finger….

Gner gner ner ner nrrrrr. Gh. That’s the sound of frustration. I’m back from my trip. There was good: I was cooked for, we watched new (last 2 years) films on a giant telly, I met and formed a relationship with a museum new to me (the Ashmolean* – like the British Museum but smaller and emptier). There was bad: accidentally spent too much because of poor planning and confusion, ate a lot of crap secretly, didn’t do the things I was meant to do because my friend just didn’t engage. And there was ugly: frustration at my friends stemming from them only discussing things I have no connection with and talking over me/ ignoring me when I did try to speak – so it was like being in school. I was bullied in school, I was ignored when I wasn’t bullied. These friends are older than me and I met them at University and after. It was like being in the Twilight Zone because all they talked about was houses and buying houses and property prices, which is exactly what my Dad does. I don’t own a house. I never will, but people don’t understand why I’m not interested in property. What my Dad and friends don’t understand is that to me property (the ownership of) is a major status symbol – it makes them the dog that pissed on all the trees, and their discussion of it is exclusive. Quite literally in my case. I have never had a problem discussing people’s houses etc. in the past. Never. I’ve listened to hours to people discussing how many bedrooms they want, the kinda roof tiles their dream house has, what they want in the garden. And it’s been ok. I’ve dealt with the fact that that will never be me**. But when I am invited to visit in order to help someone undertake a task because I have the skills to do it***, but I end up a) listening to them talk about their new projects, dreams etc. and b) listening to them and a +1 friend talk about houses for 6 whole hours, and never get to do then thing I travelled to do, I get frustrated.

This is a Spoonie**** thing. I only have so much energy. It took a lot of energy, planning and sheer will power to get to Oxford. I went to help my friend do a job I’m trained to do (and also to see some of the city – I’ve not visited properly before). None of this happened. But the energy, the spoons were still used. I gained next to nothing for my spoons. It was very like my holiday last year, when the same thing nearly happened – I felt bad/ was made to feel bad because I wanted to leave the house. But this was worse because there were 3 of us, and the only thing that was talked of was houses and furniture, and other people’s projects. I wasn’t asked how I was once, I wasn’t asked what I was doing, working on, what I wanted to do. In addition to this, one friend made assumptions about my calligraphy work which displayed rather painfully the fact that she’s not listened to  or read a word I’ve written to her about it. She wants me to help her with her art project, help her in her new life in a new town and to make things for her to sell on a stall etc.***** which I have never said I’ll do. When I explained what I was doing the course for, she seemed horrified: it was obvious that my careful explanations over the last 6 months have not been taken in. This is extremely disheartening. Said friend has recently begun learning a new skill, and I have listened to her talk about it, looked at photos, read messages, sent links and followed her development. I spent 3 hours talking to her about it yesterday, only to discover she had not paid any attention to what I was doing. In addition to this, when I brought up doing the job I’d travelled to do (pricing books for her to sell) she dismissed it over and over. I wanted to show her how to search and price her books for ebay or to sell to dealers, but there was never time, and eventually, she dismissed it – ‘oh, I’ve looked on X and there weren’t any, so I’m going to give them away’… ******

I know I am sensitive at the moment. I have my periods, I am more open to slights, and I’m tired after the travel. But this has happened before, over and over, and this time it really bites. My friend loves making money from buying and selling. If the shoe were on the other foot, she would have sat me down and made me do what she wanted, would have chased me up when I got home to see that I was maximising the money potential of my books – because her time is valuable and if she sets it aside to ‘help’ people, she expects them to be grateful, not to waste her time. Now, going to stay with a friend in a nice city is never a waste of time, theoretically. But for a spoonie, for someone like me who is easily tired and suffers from anxiety, it is. I sat anxious and jittery waiting for her to want to start learning to price. Waiting for her to do the thing I was there for, because after that I could relax. But no. No relaxation. Then hours and hours talking about property. Actually, hours and hours of me sitting, listening to two people talk about something I have no experience of, listening, excluded to a conversation of which I can have no part. It was the exclusion that got me. There wasn’t a conversation I could take part in. When my friend and I were alone, she just talked at me, or asked me questions relating to her new hobbies. When the second friend joined us, everything was about the house she has just bought (I’m glad for her – she needs a change), how it would be furnished, how much traffic goes past (there’s an app for that) etc. Even when I did try to chip in re: decorating (because I (unfortunately) have ongoing and seemingly unending experience of that – my Dad has just destroyed another room) I was ignored. I felt like I should have put my hand up to speak. In the end, I just had to get a cab and get away. I’m glad I did. I spent 3 hours in a lovely museum, added to my fridge magnet collection, learned a new word (‘Janiform’),  got to see some famous marbles, and had an excellent bacon sandwich.

Where does the title come from? What has it to do with boring conversation? Well, it comes from an old, rather racist joke: ‘Old Indian Proverb: Man go to bed with itchy bum, wake up with smelly finger’. Well, I’ve gained stink finger from a different problem. As long time readers of this will know, I have chronic constipation. It’s been going on so long that I can’t really evacuate my bowels without using my finger to push from inside my cervix (yum!). Today, on returning home, I got the dire urge to poo. Even when the urge is powerful, I can’t go without digital help, because my faeces is too large to leave quietly by the back door. EDS, IBS and codeine usage has messed up my bowel. So there I was, experiencing my usual heavy period (during which time I don’t usually poo at all as menses step up the constipation) when my body was trying to go very fast. I did the usual and realised I was in trouble. The bolus (another word for poo) was so large it was bulging through my bowel, and pushing my cervix closed. I had to do some serious and careful manipulation to sort the situation out without making myself the Inside-Out Woman (prolapse/ piles – all the fun of the Anal Fair). The reason my turds were acting all Fast and Furious was because of the stress I had felt earlier in the day, and then the relaxation and calm that came with the museum and then the stress of the coach journey home. Though the problem was resolved (not solved) without too much pain or bleeding, I realise now I have a proper problem: I think I have some kind of prolapse – a Rectocele – where my bowel just wants to get way to close to my vagina and cervix and tries to burst through and join the party. I’ll let you do the Googling. This is not a fun thing. And considering I’ve been self-evacuating for 9 years, I doubt a change in diet and some Kegels******* is going to do it. But we shall see. And we shall have to see soon, because I can’t go on almost literally having a poo-baby every time I need a dump. I’m nearly 40 for Chrissake, I wanna shit like a grown up, even if I will never have a house of my own, and free rein when it comes to curtains, sofas and plants.

*http://www.ashmolean.org/

** Genuinely. I got over envy/ jealously of people having ‘normal’ lives – job/ career, house, family – a long, long time ago. I don’t know the difference between envy and jealously, but I have never wanted anyone NOT to have something so I could. I was brought up an ardent Christian, and to wish loss on anyone is not done. I did used to get a bit covetous when I was a teen and til I was 24, but then it went away. This doesn’t mean I like being excluded and talked over.

***Like Liam Neeson in ‘Taken’ I have certain skills. I can price second hand art books, I can draw shoes, I can hear double entendres where there ain’t any…

****Spoon Theory: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

*****Basically be interested, involved, invested in her progress (as I am) while not taking any fucking notice of what I’ve been doing, and not even pretending to give a shit.

******As with pricing anything, there is a method that works. I know the method, I could make her money. That was at least 50% of the reason I travelled to see her and stayed with her, even though I find it difficult to travel and find staying in strange places anxiety inducing.

******* Pelvic floor exercises. Sorry for all the asterisks and thank you for sticking with it, here is something  ‘Janiform’ – which means to be two-faced, like the Ancient God Janus:

Short and Pointy

I’m going on a trip out of  London and I’m not looking forward to it one bit. Not only have I got The Red Tide (periods) going on, but I’ve been super stressed (my seizures have come back) and I’ve over used my body. I’m frazzled. It’s totally the wrong time for me to be getting on a coach. I’m leaving in 2 hours.

Why am I telling you this? Well, really I’m just recording it. I have been stressed, and scared and angry and lots of feelings based things. I’ve been very active (gardening, cleaning, tidying) and I’m so sore and burned in the noggin. I’ve not been able to sleep, yet staying awake has been hard. My eating patterns have gone all over the shop. Yet I’m still keeping to my agreement to see my friend. I’m documenting it here so that I have a record of it. So I know that even though I really, really just want to lie in bed today (like I did yesterday), I haven’t. I’ve showered and packed and am still going. I don’t want to, though I love my friend. I suppose I’m documenting it so that when comments are made about how lazy I am, and how I don’t do things or have a life, I have a record and I can say ‘Well, actually, on the day I went to visit my friend, I was bleeding like a pig, in the days before I’d hoovered and washed my bedroom floor, filled the garden and bought necessaries for the house, so that Dad could decorate a bedroom while I was gone. I do things, I just don’t do them like you want me to. If I didn’t do things, the fridge would be full of mould powerful enough to take over the planet…’ etc. My paranoia about not doing and doing and being worth the Oxygen is a bit strong at the moment.

I’ll report back about how Oxford survives my Blood Wedding.

In other news, I’ve been consciously cutting back on my pain pills. At the same time as trying to eat properly. The eat properly thing has failed since Sunday. But the pain pills thing is on-going. I’m still in pain, but I’m using my mind more to locate exactly where it is and ignore it. I know I’m not going to be able to do this all the time – I know that if I have an ongoing project or am in certain situations (volunteering/ calligraphy class) I won’t be able to zone in and out. I know that being out in nature helps (even if it’s just a park), but I’m trying to get back to when I was badass enough to do this mind trick. Same time I was badass enough to remember things properly….

Again, I’ll report on my progress.

The Little Anus That Could

Though I am enormous – 5’11, 15 stone – I am fragile and I am clinically malnourished. I’ve not had a gallbladder for 16 years and I’ve had acid reflux and IBS for over 20. It doesn’t matter how much spinach, steak and fruit etc. I eat, I’m always anaemic and Vit D deficient. I am on prescriptions for them. I am always tired, and frequently so very exhausted I can’t bring myself to cook, or even eat ready-made foods. Even though I am aware of this, I rarely am conscious of it. And my attitude has come back to bite me on the arse this fortnight.

I have been very, very stressed in the last month. My family is unhappy, there have been changes to my scheduled life that I was dreading and that have not been fully resolved, I have multiple medical appointments in the next couple of weeks, and my Dad has been a lumpen mass of Nag. Pushing through the first two and anxious of the next, I failed to remember that I have IBS, that there is a reason I take 2 lots of Iron a day, and that I can’t sit down and eat 3 massive bags of popcorn and expect nothing to happen*.

After a stressful day I consumed said popcorn. No poo happened for a few days. Then diarrhea. Ok, I brought that on myself. Burned throat, terrible taste in my mouth, terrible heavy breath… shit. Acid Reflux. Ok. Gaviscon and some bunging medicine. But the ill feeling, the heaviness and the exhaustion that had come with the yearning for popcorn didn’t go away. 2 weeks later, and the random hot liquid poops are still happening. I’ve changed my diet: proper food, meat and 3 veg. I take the Gaviscon and the Iron and all the things, but still the random hotness happens. And then nothing. Or something, which feels normal. Then abnormal. My joints have been aching and I’ve had to pull myself up the stairs. I’ve been sleeping 22 hours a day and my Dad has been nagging the beJesus out of me, calling me ‘a lazy bugger’. I’ve been scraping my teeth together in the night and dreaming of smashing them into themselves, waking with my jaw askew. My shoulder and neck pain is back, by feet feel like they’ve been run over by a steam engine** and all the hurts hurt. Oh, and my scalp feels like soup, allergy soup with dandruff crust croutons.

And it’s all stress. All stress. And I can’t do anything about it. It’s as such a pitch as to be un-reachable with my current feeble resources. Every night, and then every time I wake, I visualise killing myself. I’ve missed booked exhibitions, booked concerts, volunteering – everything. And I only realised on Sunday, when my Dad was out and I had the house to myself. Yeah, I stayed in bed, but with the window open and the light coming in. I read a book, a fiction book. True I nearly shat my pants, but I didn’t have any stomach cramps. I didn’t cry randomly. I must try, really try, to remember this stress/IBS thing. I must remember that not taking my Iron leads to me not being able to breathe properly (I stopped taking the night-time dose because I was having to take so many painkillers and was doing no exercise: I believed I’d never shit again if I took the Iron too) and I really really must remember that I can’t eat 3 bags of popcorn and get away with it.

*To my body. In fact nothing did happen, which was part of the problem: I think my body turned the popped corn in to bowel-crete. I’m certain that I’ve still not passed it.

**Not a train, one of these – used to flatten roads:

In my youth they were still used on our roads – I have seen one in action and everything.

 

The Wonderful World of Jelly Legs

I’ve got to face facts (or hips and knees and ankles) and go to my GP. I’ve been having burning pains in my knees for 10-12 days now, with the odd smattering of the same in my ankles, and worse-than-Sciatica pains in my hips (one side then the other, not together). I’ve been doing the physio, and I’ve taken some super-strong codeine that isn’t mine, but nothing has touched it. I’ve not been able to sleep because the pain has been so powerful. So, a GP visit is due. But I don’t want to go because I’ve let a situation with my GP snowball. Last year when I was applying for ESA, I asked the GP to write a letter for me to support my claim. They would not do it without my paying for it. My Dad went and agreed, the letter was written, but before they’d done it, I was given the benefit. I’ve not been back to pay for the letter. This exact situation is a perfect example of how my anxiety etc. works. Something happens (I don’t need letter), I let the situation slide because I’m so happy I don’t need the letter, and now I’m so fucking scared and embarrassed about going in the GP and dealing with the situation. I’ve had £50 in cash in my wallet for weeks, waiting for me to get my shit together and get down to the surgery to pay for the letter. But, now I can’t avoid it. 2 weeks of shuffling and I have to do something about it.

One thing I did notice, and this was because of Ren at https://brokendownbody.wordpress.com/ writing, was that the pain subsided once my Menses began. It built up in the week before. The first day I was bleeding I had no pain, but now it’s back. I shall make a note of if it goes away with the Blood Wedding, or not. If it is directly connected, that is something newish, and good to know. I believe the hip pain, and suddenly inability to bear weight on my leg, is not period related. I’ve had problems with my hips since I was 2, and they are very tight. This pain and weird sensation of ‘snapping’ is new, and it makes me make random ‘AwOooouuup!!’ noises. My legs randomly ‘go’ from step to step, and my stride is completely without rhythm.

My family is still falling apart*, and I have had to push through these pains in order to help the situation – get a room ready for my Cousin to crash. In so doing I’ve found my massive stash of jewellery and also a lot of unfinished sewing projects. I’ve decided that I won’t keep the latter but will document them before they go. I’ve also given a lot of my beloved shiny accessories away to cancer research. something I thought I’d never do. But I have to. I also discovered sooo much art equipment. I have many pads. I’m going to have fun with these. I have plans for art works and I just hope that my mood stays as it is. Last week I was very low and I feel the shadow of that lowness with me still, but the weather and light are helping me feel less like I want Death as my Homeboy.

*Brother getting divorced (15 years of marriage, 3 kids, 1 mortgage), Cousin separating from parther (22 years, 2 kids, no mortgage), other Cousin Unemployed (Wife, 2 kids, lives with parents) and fighting with his parents about how much space he has in their communal living house, Uncle (60+, Married, 2 kids who live with him, 2 grandchildren who live with him, triple heart bypass, bladder cancer) with suspected Lung Cancer…

‘Self-Care’ and Ferrules

I don’t have ‘self-care’ rituals. Note I put them in inverted commas. I’ve done this because I’ve seen ‘self-care’ mentioned a lot in that I’ve read lately, and it seems to mean things that are extraneous to actual bodily survival, but that are helpful to the people writing. So ‘self-care’ is not eating, sleeping, or wiping your bum, but anything from skin care masks, spas and extra work-outs in the gym, to weeks away getting sun. Also eating things does play a part in this, but it’s eating things deemed special in some way.

The reason I don’t have ‘self-care’ rituals in the more usual sense is partly because of the amount of problems I have with my body. And I’m not talking about the big ones. Not the pain or EDS or twisted spine. But the little ones. The acne, psoriasis on my scalp, self-harm, trichotillomania. I don’t have facials because my skin would react by trying to kill me. I don’t dye or ‘treat’ my hair because I’d be left a mass of scabby lumps. My nails have never been ‘cured because if I grew them, I could not feel anything in the tops of my fingers. They grew once, when I was in hospital for a month. I was so chuffed I painted them amazing colours. But I associated them with being ill, so once I was free, I cut my nails and my hair (which I also associated with being ill). So, I can’t really treat my body – unless you count the weekly laxative- but can I ‘self-care’ in different ways?

Yes. And I do. And this is where things become ‘normal’ for me. Where I join the general rat race. How do I make sure I do this? How to I make this important enough to do it, considering that I find it difficult to make sure I do my physio… My recent spat with my Dad has clarified that  lot of the things I need and don’t do to keep me well and moving are not done because of years of comment from my Dad. When I used to go to do physio, he’d comment ‘Doing your workout?’. When I used to make art things: ‘Doing your art therapy?’- ho ho. And this has never left me. It’s affected lots of things. I’ve written before that I find it difficult to do anything to the way I look because of his comments. And this spills over into everything, including cooking. ‘What are you eating, what are you cooking, trying something new out?’. Innocuous looking comments, but they aren’t written in his tone. Which I can’t even describe – perhaps I can- it’s bitter and pointy and snide. People would pay him to voice subtle baddies. Everything has a commentary, and that is what is replayed in my head. Depressives and people who suffer with anxiety frequently have an amplified voice of criticism in their heads. Add to this an actual voice, and implied criticism, unclear comments and negative tone, and you get a shitstorm of self-hatred. Or you do if you’re me.

So back to the original question: how do I ‘self-care’ – how do I make life nicer and better for myself while also fighting the comments and criticisms racing round my head and life? With difficulty, and with determination. I do little things that are practical helps, that make life better quickly. That solve problems. And that I can do without help from my Dad, or others. A recent example is looking after my art equipment. I don’t have the money I once had to keep buying stuff, even lovely useful long-lasting art stuff, so I have to maintain that I’ve got. I have a lot of paint brushes, some over 20 years old, but I’m harsh on them and since I began painting, the quality of brushes available to me has changed. This is the case for all artists – companies have closed and materials have become noticeably more expensive. Some materials are not being made at all . In addition to this, the oft quoted line that you get what you pay for is not true. The gap in price between a world-class brush and average brush and a cheap brush is huge. The gap in quality, isn’t. At the top you get a brush that will last 20 years, but the middle and bottom are very close. So I buy student brushes that have good bristles, but that are not attached well to the handles… This is a recent development in brushes. Middling and cheap brushes have shit ferrules (the metal bit) and shit handles. Also I now buy almost exclusively synthetic brushes that can be used with all media rather than buying squirrel etc. for watercolours, as the squirrel available for my  l budget is shit and synthetic tech has moved on massively. I have a lot of brushes, but eventually they need maintenance. Recently they needed it all at once – 10 brushes lost their heads, so I made sure I got glue and I made sure I didn’t lose it and I made sure I cleaned the end of the handle and I made sure I glued the brushes back together and fixed the heads in place while they dried and re-varnished the naked handles (the paint coming of the handles contributes to the ferrules getting loose- you used to be able to clamp the ferrules back on with pliers but now the metal used is so weak it won’t take it and pliers cut through  it…). And this is my ‘self-care’. Managing to remember to get the damn glue was a highlight. Other things include buying new trainers when mine wear out – I can’t walk without them and my pain increases rapidly once they’ve reached the point of no return. I wash my make-up brushes, make sure I give myself enough time to do my Calligraphy practice, sew up the holes in my tights. Hell, I bought new ones this week. All these things add to my comfort in living, some directly but others because they reduce worry and anxiety. The brushes are a perfect example of this. I now know I can pick up any of my 70+ brushes and they should keep together. This will save me money, and money is anxiety in paper and disk form.

Comfort is very close to happiness for me. And that’s an achievement.

Bad Motherfucker called Stagger Lee…

This is going to be one ranting moaning bitchfest from the off, I warn ye, there is no joy in this post. So if you want fairies and unicorn enemas, jog on.

In no particular order, we shall begin with fear and threats.

I live in a big jumbled pigsty of a house. When my Mum got diagnosed with terminal Cancer in 2015, my Dad destroyed the house and got the builders in to renovate. All the stuff from the rooms to be ‘done’ was stuffed into other rooms. Crammed, rammed, bullied and packed into every inch. Think a tiny Japanese guy eating 35 hotdogs in 40 minutes. You know the stuff. Like a cartoon. Since my Mum’s death, we’ve been trying to sort out the house. The ‘we’ is mainly me when it comes to sorting. My Dad takes months to build a box round the gas meter. I am left with the sorting and throwing out. We have a shed bigger than most London flats full of my Dad’s things, but I have to throw mine out. When I was employed, I bought a LOT of stuff. Over the years since then, I have rid myself of most of it, but three things remain: jewellery, shoes and handbags. When I was employed, I went out a great deal, and actually used the handbags – but I stopped using them, but still added to the collection. The shoes are a different and deeper matter. I’m not going to lie, it’s very basic. As a child and teen with large feet (uk size 9) that were also deformed, I could not get shoes. Bingo! The internet and shops deciding to go over size 8! And also a wage and big time depression= shoe problem. I have whittled my shoes down to: formal flats I can genuinely wear, heels I had a fucking good time in, heels I love. I’ve rid myself of about 30 pairs of shoes already, and numerous handbags, also 3 bags of jewellery and hair accessories. So, I have been getting rid. A decade ago I was in bands and in videos and needed ridiculous clothes and jewellery to perform. Nearly all of that is gone. Those things were my history. Other people have houses and children and certificates on the wall. I had my things. But, as I’ve said, nearly all are gone. My Dad has no idea of how many of my things (that I paid for from money gained in jobs that broke me physically and mentally – all were gained before I became disabled) have left the house. But there is still more to sort. He has been going on and on at me to sort. And I have, little at a time. Last week I had bronchitis and was sick, then this week I got hit with a bolt of pain I’ve not had for nearly a decade. I took every pill, many that I should not have, but nothing would shift it. The next day I had the second worst migraine I’ve ever had, cold, cold sweats, vomiting, everything. Terrible. But my Dad asked me if I was going to clear the room. I told him I would when I was able. Wednesday I was at the hospital to have a tooth out – but they didn’t do it – sensibly they decided to wait until I wasn’t full of Rizatriptan. I still couldn’t do anything physical – I was still in pain and still dozy from the migraine. Dad came upstairs to where I was sitting at the computer and joked ‘There’s not a lot of work going on here’. I swore at him and told him I would do it when I could, that I was in enormous pain, had taken all the pills and could not haul all the shit from the room. Thursday I emptied some of The Room. 2 Black Sacks of rubbish, 3 large plastic boxes, 2 sacks of clothes for the freezer (to moth proof before giving away), one bag for charity. All were in the hall. Dad came in to the computer room again ‘There’s not a lot of work going on here’, I swore at him again. ‘You’re over reacting’, no, I said, I was re-acting. He said the same thing as last time and got the same response. He provoked me. ‘You’re over reacting’ , no, I’m reacting. It’s only an ‘over’ reaction to you. To me it’s just a ‘reaction’. He told me not to get into ‘a ruck’ with him, because I would be sorry, because I would ‘lose’.He’s always done this. The phrase ‘Do not try to get into a ruck with me, because you’ll lose, you’ll be sorry’ has been a theme in my life. It’s a threat. A real and proper threat. A way of him asserting his power over me. I do everything he wants as fast as I can, but he still doesn’t get that I can’t do what he wants when he wants it and how he wants it. I’ve not seen friends since Christmas. I’ve gone out to 3 exhibitions. Every other ‘out’ has been hospitals, volunteering, class, or something to do with the house. The week came to a close with this hanging over me. On Sunday I was woken up by him shouting at me that if I didn’t get up and do some more to the room, he’d do it and he’d do it ‘good’. Basically all my things would be gone. I eventually went down stairs and he said the same thing ‘I mean it, I want it done by the end of the week or I’ll do it’. I gave monosyllabic responses ‘Yeah, ok’, then he asked me if I was alright ‘Have you got a migraine?’. I didn’t but I did feel fucking odd. I was swaying inside and my blood pressure was all over the place. I took my beta-blockers and my Diazepam, even a migraine pill, but I felt very weird. I had to go lie down again. I slept for a few hours, but woke up with heart racing and stressed to my scalp. I didn’t do anything to the room. I did my calligraphy homework. The threat is still hanging. So much of my life is in that little room. It was my childhood bedroom. I lived in it from 9-20. And then it was turned into a study/ TV room for me. It saved my sanity in 2007, but then, when my parents decided to have a loft extension and put me in it, it was filled with things from the loft. Then when Dad kicked me out of my bedroom (before the loft was finished) the remaining items of mine from my room were put in there.

Please remember, that when I moved from the little room into a different bedroom in 2000, the room I moved into was still full of my Brothers things (including the wardrobe – I’ve never had a wardrobe). I wasn’t allowed to re-decorate or anything. My brother moved in with his wife in 2002, but we still have much of his stuff. Indeed, all his knick knacks only moved to him in 2016. In fact, I’ve found 2 boxes of his stuff, in the little room. In addition to this, in 2008 when the loft conversion was going on, there was a flood that destroyed my books and many other things, so much stuff had to be moved higgled piggiled into the small room, to save it from damp. Over and again my things have been destroyed, moved and packed away. I’ve discovered the amount of stuff I’ve re-bought because it’s been packed by someone else somewhere I don’t know. So unpacking and finding stuff is not as easy as it should be. I’m finding things from when I was a teen, from when I had break downs, from the flood, from broken relationships, the paperwork from CBT. And I’m trying to sort it out and throw it out sensibly. Some things I will never let go of: my Baptism dress made for me when I was 5 by the Aunt I loved, my Communion dress, made for me by the Mum I loved. But my Dad does not understand this. He does not understand this because he doesn’t throw anything away – he puts it in the shed. He recently got rid of a canoe he half built aged 14. That’s 60 years ago. He never finished it. I’ve got another 20 years before I can match that.

This may read as spoiled brat. It’s not. It’s an on-going problem. If you never have the space, the cupboards, draws, wardrobes to put your things in, you not only don’t have any idea of what you have and don’t have, but you learn that your things don’t matter. My Dad has a shed just for his woodworking tools. He has a room for books and a room for TV and music. I don’t have a wardrobe, the draws in my loft are from my Gran’s house. I was told that for my 35th birthday I would get new draws, but am still waiting. I don’t have the money, or the physical ability to buy and assemble new furniture. I don’t have anyone (partner, family) to call to help. And if I did bring someone in to do it, I would not have a good time with my Dad. People don’t come in our house.

The title of this piece refers, specifically, to a Nick Cave song, which sounds like my current anger feels. Stagger Lee is a figure in many old blues songs, but Cave’s version is my favourite: https://www.youtube.com/watch?v=Nbe5RERDh4k – warning, contains swears.