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.