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.