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 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: – warning, contains swears.





Is the name of a product used to home fix your teeth. My Mum always had it lying around to stick her shonky crowns back in when they fell out (which was often) or fill holes in her mouth. DIY dentist that woman. Wednesday I go to hospital to have my first tooth extraction – a ‘Wisdom tooth’ that’s so deeply embedded in my cheek I can’t feel it with my finger: my mouth is actually quite small and my teeth big – I don’t know how they’re going to get the fucker out. And I don’t know how I’m going to react. I’m strangely scared. I’m scared that the noise of the tooth removal echoing ’round my head will drive me mad. I’m noise sensitive and the tooth is on my SSCD side so I’m even more sensitive. Noise has driven me mad before. In 2002 I had such bad Tinnitus I tried to kill myself. So I’m not exaggerating. I lost my mind to sound.

In addition to having 1/4 of my Wisdom removed, I have also lost my voice. So, I’m half deaf, half blind and now, mute. It is not constant, but it has been and it will return. The Dysphonia discovered in January has not reduced, though I am not drinking caffeine, am drinking lots of water and am massaging my throat. This means I will have to see my GP to be referred for speech therapy. Apparently this is an EDS thing, but it could just be a Sarah thing.

To add to the Babel of woes, I’ve had Bronchitis. I don’t go to the GP for these things any more, but as I age I get sicker and sicker from little things. I’ve had an aching head for days, and have been so weary from coughing I’m like a 19th century heroine. I have managed to do things, but not very much. I’ve managed an exhibition that was a bitter disappointment. It took so much effort to get to it, and it let me down. Pah! To hell with art! *limps off swirling a cloak over her hunched shoulder and pressing a silk topper to her head…*

Good news on the Orchid front: after re-potting, nothing negative happened. And then my Dad knocked Orchid 2 (baby ‘chid) over and tried to hide it but I’d noticed, so I had to re-pot it again. I was preparing it’s Requiem when Bang! shit started happening. Orchid 2 has started growing all over. Orchid 1 has done fuck all, even though it was given Orchid food etc. and wasn’t knocked over.

My family is still falling apart: relationships toppling over and sending up dust all over. I am having an emotional blip of quite large size, but I shall fight that once my tooth is out.



Hauntings and Haircuts

I am a few years short of 40, and I can’t make up my own mind about my haircut. Yup. I want to dye it. I want to cut it. But I’m too scared. I have a problem with the way I look – I have had since I was 7. I find it difficult to look in mirrors. My basic problem was complicated by development of acne at 11 that has not gone away. I’ve worn covering make up since then- so that’s 25 years. More many years if I had a ‘bad face day’ – a weeping cyst that no make up could cover etc. – I would not be able to leave the house. This even affected my schooling. I’ve had the same hair style for 7 years, and before that the same style for over 10 years. Once I change something and accept it, I can’t change it again: I get scared that I’ll make myself look away I can’t stand and I’ll get so badly depressed I’ll attack myself. I used to spend up to 4 hours a day picking my skin. I did a lot of damage, but it made me feel better – like I was ‘helping’ my skin, but also a relief. I had CBT to try and help this ‘habit’ – and it did. I’ve cut down massively on my destructive behaviour. But I still can’t decide on a hair cut.

In addition to the above problem, there is the problem of comments. As a teen every time I did anything with my appearance, it was commented on by my Brother or Dad. I stopped changing – hence the 10 years of the same style. Once my Brother was gone, my Dad commented. For a brief time of mania (about 3 years in my mid-late 20’s) I changed a lot, and my Dad’s comments were shushed by my Mum. But now Mum is gone I’m stuck. I’ve developed bad psoriasis on my scalp and my head hurts. I have to chop the damn stuff off and risk it, but I also need to grow the balls. I’m in the middle of a nervous phase (I have a lot of family stuff going on and my body is rebelling with pain, headaches and all sorts of problems). How to proceed? Let’s hope I grow some testicles. And that I don’t regret them.



The Handmaid’s Tale and other disappointments

Multiple turds are hitting multiple fans in Bowermanland. My family seem to be falling apart, toppling like dominoes. First my Brother and his Wife (nothing concrete has happened yet, but they’ve been talking about what is going to happen), now my Cousin and his partner of 22 years, and my other cousin, his wife and whole family. Bink, bonk, clunk, they fall. I have always been Top Loser in my family – I have no partner, no kids, no house, no job. I always looked at my Brother and Cousin as the successes – qualifications, jobs, families, property – and while that aided and abetted my self hatred, it also was a beacon. People in my family functioned! There were Normals! Oh, shit. Nope. You may have noticed that one Cousin has a capital C. Capital Cousin lived with us for 5 or 6 years after his Mum died. He’s 8 months older than my brother and more like a brother to me than a cousin. So he gets a C. Other cousin is an arsehat of such immense proportion I have no time for him. He’s causing his family grief because he is selfish. His relationship has not hit the skids, he is just greedy for what he can get out of his parents. He’s 40 for fuck sake. Blackmailing his parents into giving him property or cash by telling them they’ll never see their grandkids again if they don’t ‘help’. But Capital Cousin is different, and may have to move back in with us. My Dad’s initial reaction was ‘Ok, have the nice room we’ve just finished…’. But then he went away and thought about it. Now it’s ‘comeback in a couple of months when we may have another, shitter room for you’ (‘cos we don’t want you getting comfortable). Sometimes it takes a while for my Dad to think like me. ‘Cos that’s how I was thinking.

In addition to the above Shit/Fan situations, my Dad has been told he has some Diabetic damage to his eyes. My Dad has had endless trouble with his eyes. He is like me, naturally monocular. When he was about 4 he stuck a screwdriver in his left eye, his ‘blind’ one. Then in his 40’s he got a detached retina. Then  another and another and cataracts. Now this. He’s always been very brave with his eye surgeries, I have to say. He also had laser treatment without a blink. The fucker can’t have an MRI*, but he can have his corneas zapped while awake. The Shit/Fan family situation is telling on him. He is, of course, particularly sad for my Brother because he loves his grandchildren. He’s a very good Grandfather. But he also feels my Brother’s pain. My Dad is sentimental. He is missing my Mum a great deal. He loved/ loves her extremely, and he feels awful for Dan that his marriage has only made 15 ish years. That’s how we think in our family: 15 years is a short marriage. I think it will be the first Divorce in our history. Well, Dan was one for Firsts- in his degree (he was the first in our family to go to uni, and he got a double First), Phd. and first married. A regular trailblazer. Sorry, my grumpy malice and envy popped out there.

I’ve been looking on at this getting angry. And frustrated. But I can’t do anything. And part of me is relieved. I’ve got my own shit.

Last week I had an Adult Autism Assessment that left me questioning everything I did during it. It was at the Maudsley and it left me feeling scraped empty. I’d not had any sleep and I was scared of being late – all that jazz. I don’t know what it did and didn’t do. It’s difficult if you know the parameters and you want to fit them or not. Gah. We’ll see. I’ve also been cursed with terrible dry skin on my scalp. Not just your average dandruff – my scalp is like the surface of the moon. I fear I may have Psoriasis – I was told years ago that my dandruff wasn’t dandruff, but Psoriasis, but I didn’t really take much heed, as it was mentioned like ‘yeah, you have this thing, but that’s nothing to the big thing we’re going to treat’. Shit. I’ve been very stressed, very. I’ve not been sleeping, and then having terrible back and chest pain etc. Acid Reflux, the wish to die – you know, the whole she-bang. But having a scummy scalp too – that may be my limit. Dang.

I finally got round to reading Margaret Atwood’s very famous novel ‘The Handmaid’s Tale’ – about a time when select women are used as walking wombs for important/ worthy couples, all framed in a newly ‘religious’, moral society. It’s typically called ‘dystopian’, but recently has been used a lot on social media in reference to certain trends in the US regarding abortion.  I was rather disappointed in it. I think the story is interesting, but I didn’t find the writing stunning. The epilogue where the previous ‘Tale’ is discussed as if it were a historical document, is witty and interesting – more so than the actual body of the book. I found myself not at all interested in the narrator. I didn’t care what happened to her. I was more interested in the set up of the ‘new’ society. Those elements of the story are well realised; the colour symbolism, use of Biblical references etc. tickled my extant interest in art and history, but the main character did not. I’m glad I read it – there was a running joke in my life that I kept buying copies of it and my house kept eating them. I have about 4 somewhere… this one will be going back to the Book Shop. One thing I will say in praise of the book is it’s inspired some interesting and good illustration. I remember as a kid seeing a copy of it (my Cousin was studying it for A’level) and wanting to read it because of the cover art. Book covers are important to me.

Back to reading history next. Reading history, drinking de-caf coffee and tea, eating marzipan balls in bed. This exciting life.

*He faints in enclosed spaces.


Orchid Watch

At my Mother’s death in October 2015, I was given 2 Orchids. I don’t like Orchids. One came from a loved neighbour, and the other my estranged Uncle. I decided to try my best to keep them alive (well, not actively kill them). They have survived up until now, but need some TLC. I’ve been meaning to re-pot them since September, but never managed it. Orchids need special compost and pots. Luckily the craze for them as ornamental plants means that my local Homebase* has the Special Stuff needed to deal with them. But could I get there? I’d need a lift from Dad and for all the stars to align. Recently my stars have been off. I’ve been sleeping but getting no rest. I’ve not been eating and then gorging. And I’ve felt odd. But I became determined to get this shit done after noticing the shrivelled leaves of my Uncle Plant. Once glossy and, ahem, engorged, these leaves were dismal. I mentioned my Homebase need to my Dad last week: but failed. However today we managed it, and I’ve just re-potted the bastards. Today is a red flag day. I’m awake, I don’t feel grotty. Yesterday was the opposite. I ate so much, I had two dinners. I ate cheese on top. I got a migraine style headache. My scalp burned. Though I went to bed early, I didn’t sleep. My Calligraphy course tried to kill me again. It was all bad. I didn’t think I would  manage today – but it’s happened. If nothing else, I’ve done a long planned chore.

Decaffinated Me

Last week I was diagnosed with Dysphonia – a problem with my throat/ speaking parts. Apparently last year’s sore throat was Laryngitis and it’s left part of my speaking parts not working. This leads me to have a cracked voice and also to my voice just not being there. It’s pretty random when it happens. The ENT guy told me I have to drink more water, massage my throat and… cut down on caffeine. Now I’m not a big coffee person, so that leaves tea. I’ve upped my water, I’ve rubbed my throat, and yesterday I got De-Caf Tea. I was worried it would be horrible. I’m very particular with my tea. I’m not a tea snob (I kinda wish I was, I wish I had something that involved special equipment and was rare, but I’m common as muck), I like PG Tips, pale and sweet. And I have only 3 cups I use at home. So I found the De-Caf PG Tips (in Waitrose** – I didn’t buy cheese!) and did the biz, and it’s ok. I can definitely feel in my throat when I’ve drunk too much caffeine, so I’m hoping that this will reduce that feeling. I’m glad that I’m able to do the ‘right thing’ – that advised by my ENT and not find it awful. The ENT also wants me to have an operation on my SSCD – to plug the hole in my head. It was a new ENT and he was very positive about the operation – and was honest about the risks and their interest in me. The risk is that they’ll damage the nerve in my face and I won’t be able to move the left side. And that it won’t heal. They’re interested because a ‘genuine’ (??) SSCD is rare. I wonder what a ‘fake’ SSCD is?

Feeling better today has made me realise just how rotten I’ve been feeling recently. And how topsy-turvy things have been. My eating has been erratic, my mental health has been erratic and I’ve just felt awful. I must keep an eye on this – particularly how I feel after food, and when I want to eat. My mammoth session yesterday (chicken breast, fries and corn cob, then chow mein and ribs, less than an hour apart…) was properly abnormal. I still woke up wanting to eat. I’ve been told the Quetiapine will make me pack on pounds, but is it making me want to eat everything and then eat nothing? Hmmm.

*Homebase is a general DIY store in the UK. It has a garden section and now a catalogue shop – Argos. The many eyed God is an odd name for a catalogue shop.

**Waitrose is a fancy grocery store that sells artichoke hearts as a basic food and whose in store butcher has Ox cheek. It has a lot of cheese.

Strange Change

I don’t like change. Never have. But sometimes change is thrust upon me. The things I hate to change most are related to my face. I am not pretty or beautiful or usual looking. In addition to this, I have bad skin – pale with lots of scarring and dark marks*, red, brown, purple lumps. When I find a make-up I can get to stay on and cover these things, I cherish it and buy in bulk. Some of the great upsets of my life have been connected with discontinued foundation. At the moment I am struggling with a discontinued lipstick. Not as bad as a foundation, but still unsettling. Why? Well usually I don’t get upset about lipstick or eye shadow. But I am. And I realise why: my Mum.

I am currently scared of changing things from as they were when my Mum was alive. But I’ve changed a lot of stuff, but things to do with my face and hair I can’t change. I have a new coat, and shoes, and bag. New tops. But I can’t change my hair style. I really want to. My head is uncomfortable. I’m too scared to change it. I’m scared bad things will happen. Really bad things. And that’s where the lipstick comes in. I’ve been looking for a colour match for 4 months. Watching my remaining nub of waxy colour diminish. I’ve colour swatched across London. Nothing. But today I had a break through. I was very cold, very tired and a little angry. I went into a shop and tried on a colour I’d not considered at all. It didn’t look terrible. I felt relieved. I felt light and happy. I sprayed myself with a random perfume (I NEVER DO THAT) and headed out into the dark night.

I won’t buy the lipstick, it didn’t do much for me and was very expensive. But at least I know what not to buy. That is a breakthrough: I have a big pile of lipsticks I bought (over years) thinking they’d be ok and didn’t try them because I was scared to – embarrassed in the shop etc. particularly department stores. I may buy the perfume when I qualify for the necessary mortgage.

My Mum was always the one to tell me if I looked ‘okay’ (by my standards, which she understood). She checked the spots I couldn’t see on my right side, or neck, were covered. She brushed the dandruff off my shoulders. When I did things to my hair, she checked the back. She did all the Mum things. I don’t have anyone to do that now, and being half blind and having self-esteem so small you need NASA lenses to help you find it, means I’m nervous leaving the house nearly all the time. I can deal with it, but now and then it falls on me and crushes me. Not having the right lipstick, or having wonky hair, can ruin a day for me, can breed anxiety as powerful as a Pitbull. But today I felt a little glimmer of hope. Hope in a tube I had the balls NOT to buy.

*I am not a Death Eater. For some unknown reason, though I am pale skinned, I have keloid scarring and very dark patches of skin on my face. I scar a dark brown or purple. No one can tell me why. I know Keloid scarring is connected to EDS, but the colouring foxes people. They don’t address it, though I think it should be addressed – not because of vanity – but because of Lupus. Lupus is in my family. Cancer is in my family. You can see what I’m thinking re: dark patches. One day someone may look at them – I am leaving my body to medical science.