remedies and respites 1/2

Looking back, I find I haven’t written a post on the oxygen therapy that has been making such a difference for me – partly because I have been out doing things probably!! I thought it might be useful for anyone considering what might help them cope with a chronic illness if I shared how I choose what works for me – because the MOST important thing I can share is: it is different for everyone.

Please don’t despair if you are having your worst year – a lot of people are, the general atmosphere [Tories winning the election, disability benefit disasters,  Brexit disaster for the economy] has been grim, even though we had a hot summer – suits me, but not everyone, friends with migraines were down and out, pollen allergies ditto and CRPS peeps found the heat hard.. now we’re on for a cold winter, which should hopefully kill some of the germs lurking, but sets neuralgic pain off bigtime.. that’s why I’m writing this, actually, the pain in my leg is spiking and the pain killers aren’t doing anything so I need a distraction…

I divide my health management into remedies and respites – respites are distraction activities and also affirmation activities, reminding me who I am and why I keep taking the remedies😉

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REMEDIES

I am very lucky in that certain medications work very well for me [my heart aches for Jay who has worse pain and no/very few painkillers] and after a year lost to tweaking meds and trying ineffective drugs, be aware it can take a long time to get this right for the unique being that is YOU. Reading any Fibromyalgia discussion thread will make you realise one woman’s lifesaver sends another into a crash… remember that, next time the doctor struggles to get the right one for you – they are trying, we’re just all different, very VERY different in how we respond.

CHIROPRACTIC  My life kind of revolves in fortnights – because that’s when I see a chiropractor. I am incredibly lucky as my late husband and I used to swap art and organic, biodynamic produce from my allotment for his and then our treatment, and when Andy died, I broke 2 ribs and my collarbone and basically everything changed in what I could do. I was diagnosed with fibromyalgia 15 months later, so they all seem bundled up to me. Anyway, I made a superb pair of quilts for the chiropractor to say thank you and since then he has been treating me with no barter [I am an interesting patient😉 always be the most interesting patient you can, all kinds of good comes from it😀 ] and as he manages the practice, he sees me once a month and does this amazing neck unlock that means I see clearer and feel less pain for at least a week, like sometimes only Gabapentin and no Dihydocodeine!! Yay!! The other chiropractor sees me the other fortnight – I do take him a bag of baked/cooked goodies cos I really appreciate him adding me to his list and he eats stuff I can cook for. [I used to do catering, so making more is easy for me] Anyway, he gives me 5 mins of acupuncture on my neck and the activator [a sort of gun that sends air in pulses and makes your muscles etc shift] on my back ribs [ow!!]  and collarbones [yowwww!!] Yes, it hurts, for a few seconds, but oooh, the pain relief afterwards..and it has this side effect – I feel ridiculously happy/ good natured/ positive!!! I’m already a bit that way, I’m a relentless optimist, but wow, the treatment really helps.

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This brings me to a significant point – managing MOOD can be as important as managing most other symptoms put together. I don’t mean insulting mind over matter stuff from the woo woo merchants, to whom I feel such anger when they insult people in huge pain by suggesting some chanting…but if you can feel the least bit positive, hopeful, constructive, peaceful or content, it really helps cope with the damage that chronic pain causes, the grief for the life you lost, the friends you have to disappoint, the missed opportunities, the tiredness, all that…

It gets really important to weed out activities and people who don’t get it – they will drive you round the twist. Some can be sent reminders that links to chanting sites are NOT helpful and an allies 101 post sent for THEM to read. Some, like in-laws, can be trickier, your own family even more so. I have no advice for that, as I estranged myself from my family of origin when it was a choice of my sanity or their denial. Daoist ‘bad thing, good thing’ – I see so many comments from people struggling with hateful attitudes from blood relatives…what has worked for me in general is to set boundaries, to coach people how to help me and to pay for services that would be awkward to ask for. Where do I get my confidence?  Well, we are the EXPERTS on what works for us. If you have just been diagnosed, believe me, noticing or keeping a diary for a few weeks will get you clear what tires you out/ brings on pain very quickly. Can be useful to show disbelievers btw! Also, I grew up in a dysfunctional family [bad thing/good thing again] so decided to learn how to raise myself right.. lots of books, meetings and thousands of therapy hours under that bridge😀

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OXYGEN THERAPY I  read this article

http://www.news-medical.net/news/20150603/Women-who-suffer-from-fibromyalgia-benefit-from-hyperbaric-oxygen-therapy.aspx

– and it convinced me to try oxygen – not at the rate in the study, as I wouldn’t be able to afford it and it would have required giving up other therapies I regard as essential. I found out that there was a local MS Centre offering Oxygen treatment  [check here for yourself http://www.msntc.org.uk/ ] and that they offered a free trial – I was VERY worried about being locked in under pressure for 90 minutes, as agoraphobia is no fun for me, or if I lost it, my cellmates😉 The trial went well, and although I have had one blip [I’m also allergic to Vicks VaporRub and Olbas oil but forget to warn people in the summer] I managed to attend fortnightly for a couple of months and then took a break and now go weekly. I get lifts [thanks Onni!] which saves me £10+ each way, phew! I find it hard to be in the chamber that long [agoraphobia] and in a chair/upright that long [backache] and the noise of the masks/oxygen and the pressurization sets off my tinnitus and I get more nightmares [PTSD releases as the neural pathways re-open, I guess?]  however, despite all that, it is STILL worth it because although I come back and sleep a few hours, when I wake up I am more mobile and my sleep pattern tends to be better for a few days [except for nightmares] and my strength/ stamina is much better. My fibro fog has diminished and I can write a long blogpost again😉 I can think through an art project or design a garment without feeling exhausted. I still get very tired if I then have to communicate that to someone else, but I was getting tired talking to myself :O I can manage more in one day again and I have surprised Eleanor a few times this summer popping in to Knit Nottingham – look no wheels!! though I then sink gratefully into a chair😀 I manage my time in the chamber very carefully and warn people I am a fidget as other people can of course be tense too. I took knitting at first, but it is very hard to see through my glasses wearing the mask [think big fighter pilot style, not dainty hospital] so I have to take them off. Sewing patchwork turns out to be perfect, I can finish a rosette [7 hexagons] and maybe start another and if the music is good and I know a majority of the other divers [there are 7 seats and 2 wheelchair spaces, all in the size of a big lift!] then I will even be quite relaxed at some points. I know people who can’t do it because each individual symptom is too bad for them, Keith got very bad leg cramps from sitting upright that long, he’s quite tall too, so holding his legs in was hard too.. so it may not suit you, but it is something the doctors won’t mention that could help, and a free trial will give you some idea. Our MS Oxygen Centre also has a monthly ME/Fibro support group meeting and a gym and other professionals you can book in with for tailored Physio and Reflexology, each Centre is slightly different, so worth checking out. I’ve met some lovely people there too, and if you are considering a special diet, you will get support as most people with MS or cancer are on one or another, leading to some very interesting chats🙂

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THERAPY/ COUNSELLING it is really invaluable to have a place you can vent how crap this is. Choose your therapist carefully if you are paying! If you have been assigned one, the CBT [cognitive behaviour therapists] peeps are great for strategies, rubbish on feeling your feelings when it is about chronic situations. They CAN help with how to tell Auntie Maud to F*ck off without swearing though😉 a pain relief support person may offer a mixture of CBT and listening and a Person-Centred or Client-Centred/Rogerian therapist will work with you, where you are, no judgement. You can even ask for no feedback with some, though to be honest, hearing someone agree how bloody hard it is really helps with backbone when it comes to facing up to energy vampires. I again am very lucky, I have had some very crap therapists and some very good ones. My current therapist really gets it, because she has been there. EMPATHY NOT SYMPATHY. People mean well but this is not like that time they had flu, not even like when they had glandular fever… it’s worse, it’s affecting every area of your life. You deserve the best you can afford, though training up a student can work well, they are often very interested and will read around the issues rather than thinking they know how to handle your life.. sigh…Above all, if you don’t like your therapist or feel uncomfortable/ silenced in any way, stop. Find a new one. They may try to persuade you, at your expense, to work through the difficulty. No. Life is too short and your energy is too precious to waste teaching people who should know better. If they offer a free session, well, it could be worth it, they are showing good will and respect, so there is something to build on.

Personal Assistants/ Professional Carers are also people to only work with if you feel comfortable, if you have any choice whatsoever. I have 2 wonderful helps, both of whom have taken a certain amount of training and me learning to accomodate them – Penny doesn’t do heights, cobwebs are manageable with a cornice brush, lightbulbs, ask someone else :D  Cherise, well, onions make her cry for ages!! However, they both have hearts of gold, respect I am an artist and have different priorities and honour those. One previous help wanted me to use fake Cath Kidston tins for everything in the kitchen – how about NO!! I pay them £10/hour and I feel £35 per week is well spent for having food prepared or brought in, a lovely clean flat, shopping from a half dozen places cheaper than supermarkets and taxis to get there and the SPOONS… the sheer energy it takes to go to more than one place without a sit down for an hour somewhere in the middle, even a cafe is too noisy/demanding to recover energy in, unless it is very quiet..

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MEDICATIONS – this is probably what you were expecting for remedies😉 I take Citalopram [keeping my anxiety disorder low definitely helps manage pain] Gabapentin 900mg daily works well for me, this varies enormously among fibro-peeps, including people unable to tolerate it all and Dihydrocodeine up to 180mg daily, depending on how the chiropractic cycle is helping me. I still get pain that makes me cry, sometimes the sharp pain in my leg takes me completely by surprise and would knock me over if I didn’t have the stick and/or rollator. It gets worse if I sit upright or use my sewing machine a lot, so I do things like swap leg for the foot pedal and lie down every 20 minutes, frustrating when I’m enjoying myself, but yelping with pain is no fun either..

WALKING AIDS – since I started Oxygen Therapy I can sometimes manage with only a stick – indeed I impressed the manager with my turn of speed so much on Monday she asked if I really need it🙂 unfortunately yes, I’m great first thing and for a few yards, toiling round a big shop though..not so much! Mostly I use a rollator with a seat, I’m now on my second [thanks Vron!!] as the brakes on my first one keep going. A rollator is great because you are still walking, but ergonomically it uses less energy as the wheels give you some momentum, and confidence-wise it’s unbeatable, because the minute you need to sit down you can, and the cushion and back support mean I can manage even a picnic in the park with friends for over an hour🙂 I’m very bad for loading the basket up on my way to the bus stop though, so end up too tired on the bus home. Pacing can always be improved! I regard taxis as a walking aid too, often taking a cab for the first leg of the day to save myself energy until I have ‘warmed up’.

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Special Diets – well, everyone is very different in this area, I tried Fit for Life years ago and it did help enormously with candida symptoms, migraines and IBS, so I have some recipes left over from that and general principles – use olive oil and live yoghurt regularly, if possible, daily. However, a day without caffeine simply doesn’t happen for me, and if I don’t stay awake enough to eat and take meds then I end up in agony at night… so personally, I have one or two cups of caffeinated coffee a day to ensure some energy, however borrowed, and then I make up big bottles of squash to make sure I get the 6 pints to 5 litres the chiropractor recommends. The water in my flat tastes disgusting so lemon squash it is, NAS, which a lot of people can’t have, homemade would be better, but I can’t cut a lemon in half, grrr. I’m a vegetarian and I feel very sad if I don’t have what I call vegetable platter and my husband called ‘veg and more veg’ [he was veggie too, but in that chili/curry/ spiced mush way] every few days… broccoli, yum!! I am supposed to avoid Savoy cabbage, and hate aubergines and sprouts, but baked potato and salad or steamed veg make me happy, veg risotto, stirfry and noodles, as long as I am getting enough veg I know my bowels will be happy – and when you take as many painkillers as I do, that is very important – and enough cheese and eggs to keep my D-lyscine levels happy, then most stuff will tick along ok. I eat bread and chocolate and lots of other things people say to give up, but personally, when I have, it has not made any appreciable difference. Others find differently, so it is important to experiment and find out what works for you and to learn to shrug off others’ enthusiastic fervour for their new wonder diet… I tend to say over and over again, ‘I’m so pleased that’s working for you’, because I am, though I  can normally tell within 2 sentences it wouldn’t work for me, but I’m 52 on Saturday and have tried lots of alternatives… and nothing works on a ‘born again’ seeking converts except living longer😉 But honour the individual unless they are on your last nerve in which case chew them out, they need to learn the signs of a woman on the edge {anyone remember Whoopi Goldberg in Jumping Jack Flash?! teehee} For repeat offenders you HAVE to put up with, then interrupt with ‘Oh I have to tell you about coffee enemas!’ etc etc.

At the end of the day, it is always about finding what works for you, and honouring your own priorities, maintaining the activities that remind you who you are, modifying them to your illness, but trying to keep the taste alive, to feed your sense of self.

Think Again: Being Human 2016

An exciting opportunity came my way and luckily I had the spoons to respond! [Viva Oxygen Therapy!!] Have you heard of Theodore Zeldin? He’s a very special person🙂

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sorry this is such a rubbish photo, but it was taken by candlelight😀 that’s a commissioned cowl in his hand, made by Singing Bird Artist😉 oh my, what an honour. You can find lots about Theodore Zeldin online, his short biography is here:

http://www.oxfordmuse.com/?q=theodore-zeldin

and his books are available from all good bookstores, as they say. Personally I think he has contributed so much to intersectional thinking by extending the way ‘respectable’ history researchers and professors can expand into political zones and make the voices of ‘ordinary’ people shine through. That he then champions a method of peace-making through conversation, an unfolding of understanding by breaking down stereotypes and having people respond not react to the person in front of them, perhaps from a group they had biased thoughts about, oh, this is Nobel Peace Prize stuff in my book…

He is here in Nottingham both to launch the Being Human Festival 2016 [many other venues across Britain, see http://beinghumanfestival.org/event/conversation-dinner/ for the event where the photo was taken, many events also took place at Contemporary, where some Black History events took pride of place❤ ] and the Nottingham Portraits project, where a city will be revealed by the views of its citizens, many more events planned for that!

So, what was Singing Bird doing there? Well, you know I’m a textile and fibre artist and work as a process artist, incorporating time and site specific details… Amber Forrest contacted me through Knit Nottingham, who suggested me as a knitter, who though disabled, would be very comfortable knitting during an event to commemorate it in some way. Thanks Eleanor, I owe you😉 After an excited phone conversation and meet up with the lovely Amber who did so much [thanks again Amber] to make sure I was comfortable and my agoraphobia and fibromyalgic needs were met on the night, I was primed. Knit a hat, no a cowl, for a man who has pioneered such exciting techniques to open people’s minds and show them more is possible! This is my joy in action🙂

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This is a man who wears suits a lot – that’s what professionally active historians of 80+ wear, but I noticed in photos often has his shirt collar open, no hat and no tie. Aha! A cowl might be useful then, particularly when travelling. Amber had found the yarn above, a navy with white thread running through, which turns out to be recycled glass fibres, and get this, it glows in the dark!! How cool is that! I immediately felt how like a pin stripe it looked, like those suits… and having thought about how he has worked to bring out hidden sides of people, I thought of natural colours, a rainbow maybe, no, better, a sunset, with colours reflected in the sea, all the ripples he has made in the world, shimmering reflections taken on their own wave out into the world and the waves he has met and with which he has rolled, how much further he goes than you’d expect from the pinstripe… So I prepared for the event by knitting the ‘pinstripe’ side and starting the sea and sunset, with short lengths of yarns prepped to allow many elements, reflecting the diverse and various people expected to the event at Jamie Oliver’s Italian restaurant.

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I arrived at the event and was seated with some help [bar stools and sticks don’t go!] introduced to some lovely people, then escorted upstairs [plenty of disabled people came to the event, but they all had to be ambulatory, and those stairs with cold brass handrails were no fun to come down]  to be able to choose where I wanted to sit. I smiled, remembering my late husband, as I chose the back corner where you could see 4 doors, but hide a weapon at my right side – yes, classic ninja/agoraphobic out but stressed!! He always knew where I would sit, and as a martial artist found it very funny, because I’m also a pacifist.😉

There were speeches, from the head of Humanities at the University of Nottingham, about the Being Human Festivals and their intentions [improving community integration and access] and from Amber introducing the Nottingham Portraits and MUSE project, and Theodore Zeldin then spoke on how to use the Menu of Conversation we were offered to guide the process. He advised how to avoid traumatic topics if you needed to, but still speak of things important to your life.. it was an amazing list and very interesting… only one thing jarred.. the use of “both sexes”. Theodore has written some great stuff on improving communication between men and women and works with his wife [they have joint copyright on some ideas/processes] so understands the huge need there is for this work.

However, it is 2016, and we do now know there are far more sexes/gender orientations present in our communities, I have several trans friends, some happily transitioned, some at the beginning of their process, but most of my closest trans friends are non-binary, and I have 2 cis friends who also feel they identify more with genderfluid orientations. What is commonplace to me doesn’t seem to have reached Theodore, but I hope someone will draw his intention to this lapse in language, because I don’t feel any lack of diversity in his approach… I will include it in feedback to the Menu process forms and if I am part of the spinoff events MUSE intends, I will definitely raise it, and suggest sticking an amendment over the top. [I am torn between eco awareness and trans ally on that, far better to have new forms, but how many have been printed already??]

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Overall I was very pleased to see a diversity of people there in terms of race and culture and disability, I met at least 2 gay men, spotted some lesbians and doubt I was the only bi person there… there were a lot of white academic types, but then they were there as helpers, so like the wait staff created another group making it slightly hard to get a sense of true proportions. One University guy made a gaffe, but it turned out well, as he casually said he had been hoping to meet some homeless people – silence from 4 of us, and then a refuge project guy spoke up about varieties of homelessness and to support him I said, hmm, yes, I had been 20 minutes away from having no key to a place of my own, flat sitting for a friend while unsafe at my own place [house sharer was letting in violent neighbour angry I had helped her partner leave… sigh] was this close enough to give him an idea? Lovely project guy immediately says ‘Twinnies!’ and goes for a fistbump and handshake! The other two joined in and it turned out we had all been in precarious positions, the woman next to me making that very good point about how many paycheques most people are away from the street if they lose their home. The Uni guy looked a bit embarrassed but got over it and joined in and heard about the project in Beeston. Sorry I didn’t get people’s  names, but knitting takes two hands, actually it takes three when you get your work out and find you have lost a long needle in the taxi!!! I spent a flustered time figuring out how to knit in smaller sections at a time with many dropped stitches being sorted by candlelight [omg] as every other row took all 3 of the short needles from my mitts project… and then some… and BREATHE!!

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My main conversation partner of the evening was a joy to meet! She was full of anger and righteous indignation and an edge of despair about Trump and Brexit and we talked non-stop!! I told her I am a possibilitarian and relentless optimist [at least when I have the right painkillers!!] and how I felt the working class had been abandoned when the first Council houses were sold off, and then when things like the Trade Unions, which had begun to diversify, black leaders in the TGWU [Transport General Workers] and women getting senior positions in the FireFighter’s Union, were pushed out of the Labour Party and the spin doctors let in, and the training and development side of the unions and the Labour Party stopped. I was never a Labour Party member, but I knew loads of Labour and various flavour Communists from being a socialist feminist with the National Assembly of Women… well I was the token anarcha-feminist😀 [some of the working class women were very doubtful when I joined, but were won over by my ability to make profits on the catering to fund speakers for International Women’s Day] These were mainly women who had become politicized by the Miner’s Strike, strikes over working conditions, by meeting or being refugees and feminists in teaching or Council work. It makes for a different energy, less despair, more backbone when the shit hit the fan, and because this ISN’T the pit collapsing on 200 men in your village/town, a relief it isn’t worse. Although it is very very frightening…

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The rise of the alt-right/ white supremacists seems to have started with Brexit, risen with Trump and if Marine Le Pen gets in in France… ffs… the recent event in Spain with Franco praised and the Nazi salute being offered to a Catholic priest – omg, omg… this is very, very frightening. Or is it? This was here before, but underground.. now it has surfaced and like a particularly bulging spot, it can be tackled and all that pus can run away. Before, Britain First and other despicables could deny their Nazi roots, now they are gloating, out and proud. And they are sickening the middle way-ers who very naively thought they could vote Ukip and it would only be black suits, not blood on the streets… if the second referendum comes through, I think enough lies have been proved, enough nastiness has been shown that with more canvassing and talking to lost-in-the-muddle types, we could get a very different result.

There is a pause in which we have time to organize against white supremacism, already Muslims and Jews have acted to make a joint organization to defend religious rights, which is amazing.. I have seen Jewish Voices for Peace making common cause with Black Muslims via Facebook through supporting Black Lives Matter demos over the summer and a couple of days after Trump’s election, this amazing announcement of the new organization. I had tears of joy… may this feed back, may this help those American Jews who do support the sending of military aid to Israel stop and instead build a programme of mutual understanding and send peacemaking volunteers to Israel/Palestine…

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But back to the event, celebrating thinking again, meeting and talking and responding, not reacting… there was such a buzz, such good energy in the room… I woke up the next day early and full of positivity, and managed to start clutterclearing my studio! That’s a win! I am meeting Amaya for a cuppa at the weekend and we will talk more about the ideas thrown up, she has great energy, skills and education and empowerment and I hope we will be able to come up with some ideas to help gather the resources of our individual networks and enrol them in creating more connections…at the least, hanging out with likeminded friends is good for your mental health! more win, more hope, more possibility webs spreading into the world! It has to be good.

 

art, survivors and disability politics

CN: PTSD, RTS, physical illness/damage following abuse, SJWs disability fails

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Eleanor of Knit Nottingham asked for Diversity is our Strength to be in the huge window for a month for LGBTQ Pride, and I was really happy to have it on show again. This time I made posters of the quotes I used in ‘open and shut’ as Brexit had just shocked everyone I know, and I’m pleased I did that. The piece drew a lot of comment and appreciation from passers by as well as the many customers and browsers at Knit Nottingham. However I was disappointed by the lack of response from a lot of activist friends in my wider acquaintance circle, very few made the effort to go and see the piece, even though it was on for a month.

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[image: Sam helping hang the giant DNA spiralling coils and pompoms of DIOS]

Art is a really valid form of protest and being told it was unimportant compared to an event 3 minutes walk away for an ablebodied person went down very badly! It made me question how deep their understanding is of the effort that it takes to be politically active and creative as a professional level artist when you are disabled by chronic pain and fatigue. Disabled artists are regularly overlooked because our CVs seem thin – finding an accessible venue is very hard, getting the art in often even harder, and that’s assuming you could wrangle the resources of energy and capability to make any art, and manage brain fog so the art has good resolution and a powerful presence. As the piece occupied the huge window recess of Knit Nottingham, you didn’t even have to go inside to get an excellent view, and with the weather being so good the door was propped open most of the time so the posters were easily seen by taking one step inside.

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The lack of response from supposed-to-be-allies has made me very disappointed again about the way disability issues are ignored overall by otherwise aware people, and by contrast the appreciation and support from Survivors Collective has been so valuable. I found myself silenced in a way that shocked me, I thought I was past being unable to speak up for myself or my art… but betrayal by allies is a really bad trigger for any survivor and I am no exception. The first therapist I ever saw couldn’t cope with the fact I wanted to work on my mother’s collusion more than the perpetrator’s actions… and shortened my sessions to 20 minutes and then cancelled them. Tyneside Rape Crisis later interviewed me to get evidence to dismiss her, but never apologised and crucially refused to waive the waiting list time for me to see a different therapist… talk about bruised! I was left paying for my own cab home [a significant cost at the time] in the dark, having been told they didn’t need me anymore and no, they didn’t see it as appropriate to support me in any way. I barely slept for a week with the huge waves of adrenalin from the fear, anger and hurt. It took me years to trust a therapist after that, and I still have no assumption of support from feminists or professionals [it’s a bit hard to disentangle from the aftermath of being raped by a doctor with the professionals, but there is some residue directly from the RCC fail.]

Why have I shared that story? Because when allies let me down, that is what is triggered – the feeling that even the politically aware will use me for their own ends and then abandon me when I’m no longer useful. Somehow the disabled and very particularly survivors are seen as people to at best pay lip service to, but at worst [Anonymous, I’m looking at you here] to be told to get out of the way so others can organise protests on our behalf, that we can’t attend because they are inaccessible due to noise/ violent or triggering speech/ lack speakers with awareness of the need to maintain empowerment levels/ in places without seats etc etc. Any request I made about access to the Nottingham 2014 anti-ATOS protest was met with horribly triggering speech telling me to ‘get over it’ – kind of aligning themselves with Iain Duncan Smith in my view – and in the end only intervention from a local Anon ‘leader’ calling the dogs off left me any space to make a NVDA family and disabled friendly protest space possible. Macho politicos are definitely not respected by the intersectional activists I prefer, but to my shock and hurt, the same dismissal of the importance of what I was doing prevailed. A very dear friend told me she hadn’t realised how much her lack of interest would matter ‘personally’ to me and she would remember in future.  Her personal support was very welcome, but left a gap, a place still not met, this is bigger, there is a political choice in the work, a creative act that aligns disability with the other divergences from the nonexistent ‘norm’… and where is the understanding audience of allies? Where was the support that understands and accepts art [with political quotes on photo posters even IS political] and deserves not to be dismissed as apolitical when giving reasons why visiting sometime over 5 weeks isn’t possible, or even important. It has taken me weeks to climb out of the feeling that the piece simply wasn’t good enough… [though how people who never saw it would know that??] and if Survivors hadn’t contacted me to request having it on show next year having seen a couple of photos online, it would have been much worse. Their instant grasp of the politics and the sheer exuberant beauty of the piece really, really helped.

http://www.survivorscollective.co.uk/

A discussion with them has then led to an exciting return to a piece I laid down a few years ago, Cradle for Stones, the respect and esteem from the Collective leading to a surge of energy for finishing it – knowing an audience exists for it makes a huge difference to how I feel working on it. It’s about complex PTSD, the layers upon layers that multiple incidents cause, the patterns, the keloid scarring, but also, the pearls, the friction that creates a beautiful, lustrous jewel. Crucially it’s about how all this coexists, that being a mature survivor with years of recovery doesn’t mean that the days of raw pain stop, it means you have tools and experience and can self soothe and cope. The extent of what you’re coping with varies enormously. Being a longterm survivor means there is very often a history of damage to the body, in ways those not affected can’t imagine.

YOU MAY WANT TO SKIP THIS PARAGRAPH, BODY DAMAGE DISCUSSED.

I can feel the taboos rising, how much do I share? Taboos for my own protection, but also others, the many, many others. We are all individuals, we have different scars, different areas we are bent out of shape. But also we share conditions that the professions rarely connect – yes PTSD, but fibromyalgia and the other chronic fatigue illnesses can be [Lyme’s] from a tick bite, but can more commonly be Adrenal Fatigue Syndrome.. from all the adrenalin of those recurring nightmares, panic attacks and constant anxiety. Often people are hospitalised for mental illnesses when they can’t cope, but Mental Health units are so poorly funded they are now mainly about dispensing psychiatric drugs, and very little therapeutic support is offered. Equally directly connected is self harm in the form of cutting, but abuse of alcohol, drugs and disordered eating are widespread responses. Back pain is often connected to childhood abuse, damage from broken bones sometimes untreated, likewise deafness and other head injury consequences. Damage to anus and vulva is a very taboo subject, damage to the brain is becoming easier to acknowledge – no, we’re not delusional and making false accusations, but yes our histories mean that our brain chemistry and structure were affected, and brain scans can show that, when the complexity of a survivor’s response lights up a scan where a simple/ untriggered response is very localised.  There’s so much more, STIs, unwanted pregnancy, HIV, but that’s as much as I can bear to write, and will have been far more than many can read.

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To live with any or all of those symptoms and conditions is unfair enough. To make art with them is very draining, and needs careful pacing. There are lots of artists with chronic physical or mental illnesses or a disability facing that challenge of wanting to raise issues and start a dialogue or open some doors, making art that is demanding to make and difficult to explain, very hard to arrange showing for. To then be ignored when we make art about anything really, but particularly about diversity, inclusion, intersectionality… hmm, that’s a failure of politics, a loading of priorities that ignores our perspective, our lived experience of constant exclusion. ‘Nothing about us without us’, but nothing about us without allies either, surely? And when we’re talking broader politics, then nothing without us, because we are a vital part of humanity too.

https://vimeo.com/107396887

link to ‘Peace, the 100th Heart’ at Nottingham Friends Meeting House

To be a survivor and make art is  a gathering of energy, abilities and intention and definitely an act of speaking truth to power. Our allies need to acknowledge that. There is a privilege in being unaware of daily pain, of mental struggle to stay active against the odds. Dismissing our artwork as apolitical is a thin spiky end of a wedge that leads to all the deaths when our disability benefits or medical services are withdrawn. Showing support for a disabled artist is as important as being at a vigil, on a march, attending a meeting. The difference support can make extends much further than most people think – a gallery may look harder at its access for visitors and artists, a piece of work may go viral and bring an argument in Parliament to tipping point… but also a door may open in an ally’s head, the clunk-click of intersectional politics being the only way forward may fall into place. We are an important part of our communities, we intersect with every other intersection, why are we and our insights optional, add-on extras, to be fitted in only when convenient?

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midnight ramblings

This is not very coherent, it started as a Facebook status and wouldn’t stop!

I can just about read again now, clearly, without losing the thread of an argument, which I credit the oxygen treatment with restoring, and so I have lots of half chewed thoughts about the past years of terrible Con/Dem government and now worse Tory gov and Labour party wrangles about what party they want to be, and what we actually need in Britain, in the world…and then I saw a link to an Independent story by Samuel Osborne about the Empire’s worst atrocities

http://www.independent.co.uk/news/uk/home-news/worst-atrocities-british-empire-amritsar-boer-war-concentration-camp-mau-mau-a6821756.html?cmpid=facebook-post

and realised I had filled in that poll, obviously to anyone who follows me! as someone who thinks the Empire was a terrible mass failing in humanity, comparable to the Holocaust… but I am apparently in a minority, so here is what I say when I have to discuss empire:

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The boneheaded arrogance of the British Empire caused so much damage, India/Pakistan, Israel/Palestine, the transAtlantic slave trade, the theft of antiquities, the crushing of indigenous peoples… ‘manifest destiny’ is normally applied to the ‘American’ Dream, but really the Normans conquering England, then Wales, seemed to be the start of the pattern of greed no longer needing concrete reasons to continue being greedy.

As soon as one group has stolen more than its fair share, it fears losing those ill-gotten gains. The enemies made by all these illegal/ immoral acts must be denied the right to educate or organise… and then several hundred years later, here we are, in a mess where so much is owed, but the greediest of the greedy have stockpiled their hoard off anyone’s shores in non-existent tax havens, and the common people of the UK have barely any infrastructure left with the transport all private except for oh, the expensive roadbuilding and maintenance bill; the healthcare system being undermined and sold off to the highest bribe; the education system set up to provide poorly skilled, low esteemed people without information or the reasoning skills to apply them widely; media owned by the new overlords of consumerist society, pushing useless products at people conditioned to ignore their true needs but to self medicate with whatever suits the market… grrrrr…

How do we unmake all this? not by ignoring those most hurt and damaged by this machine of destruction, or  the choice of profit over nature [people and environment] but by remembering and choosing slowly and carefully who to vote for, what to buy, what to make, what to grow, who to support, who to understand as still hostaged to that machine and needing education and support to disentangle them… media and information sharing are easier than ever before, but reasoning skills and political literacy in the UK and US are lower than ever before… I really hope Corbyn wins the Labour leadership and the PLP who are no longer socialists storm off, so a real People’s party can emerge, a phoenix that burns off the corruption and business-as-usual approach of millionaire MPs. We need Corbyn and Mhairi Black’s fire and conviction and community… we need more too, all the activists who could have been MPs had the system not been stacked against them, imagine Benjamin Zephaniah not pissing on Parliament, but principalling it, being a Black Rod who would shut up the hawhaws and baying pigs… stop the complacency of landowners/ biggest thieves and turn the DWP fraud investigators on the tax evaders, stop fracking and mining and worst of all nuclear and raise more turbines…

Oh, so many more things… but start with remembering, Normans and Saxons made an enormous amount of the mess, Catholic dominion amassed wealth that could fund enormous projects to rejuvenation community in Europe where so many seek sanctuary, and that only understanding we have always been diverse, the people who walked over the Ice Age plain to what became an island were a mixture, and traded all over the world when the seas rose… there is a hidden history of dealing fairly with others before the Norman values took hold, and it can return and inform us, the mixed bag on an island falling off Europe, very vulnerable to climate change, but known for taking on huge challenges… only this time, how about restitution of fairness, commitment to nature before profit? An Empire in reverse, where we went and learned, shut our mouths and listened with both ears, asked humbly for clarification and advice when we did not understand, and changed not others, but ourselves and our dealings?

It can never be fair because the Empire took so many hostages, uprooted and changed forever so many things, so how do make the new ‘we’ truly inclusive? How can power not corrupt? How can a benign dictator [thinking fictional Vetinari here, not Mao etc] be better than a run-for-profit democracy… how do we re-educate, re shape education so it engages people, lets them explore the full history of things the current system wants hidden… What would restitution look like? Jubilee [the forgiving of all ‘Third’ World debts, in understanding that the Empire stole more first] is a start, emptying the museums of all stolen goods and returning to culture of origin, where it survived, and otherwise deciding with closest kin where it should now be held…Banning slave trade, zero hour contracts, companies using the benefits system to fund their employees [Tesco etc]  changing child labour in the textile and fashion industry to free schooling plus 2 hours FAIRLY paid work which would keep the family afloat…Organic farming, fair farming, understanding of heritage farming where sheep manage a landscape etc etc… so many things…

What can the millions of individuals do to become a movement for change?

I’ve just re-started Blessed Unrest by Paul Hawken, so more may follow this😉

midnight ramblings…

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Meet the artist…

I will be at Knit Nottingham on Thursday, 5 – 7pm, to discuss art, community politics and guerilla/ public knitting/ fibre street art and to encourage newbies to have a go at freeform crochet. If you want to bring in your work for us to ooh and aahh at, I love cheerleading  too😉 I even have the pompoms 😀

Here is a vlog from EleanorTV – she knows me as Dee, Vita and Singing Bird, so they all get a roll call😉 but it’s all me, with one pair of hands!

Never assume a hook, yarn and sparkles can’t change the world, we just have to keep on keeping on with the positive message that one person at a time, one conversation at a time, things can be turned around. The big problems are huge, but they all stem from the massed little problems, that people can be turned against others when they do not know them, when they fear them, when they have stopped talking to each other. This is so depressing, so oppressive to live under… but the flipside is that then, anything, any one thing can make a difference, the ripples go outward. When we can open minds with humour or appreciation or even astonishment, we sneak past the prejudice, and then things can change, we can start a conversation that isn’t shut down by fear. And gradually we can make a difference. There are so many people of goodwill, wanting change, but because the big changes are intricate and require huge momentum, feeling powerless. When we take on the little problems instead, we can build a tiny part of that momentum…

“People fail to get along because they fear each other; they fear each other because they don’t know each other; they don’t know each other because they have not communicated with each other.”
Martin Luther King Jr.

 

Diversity is Our Strength

diversity online

I’m so  happy to announce that the fibre art installation Diversity is our Strength is now on show at the fabulous new Knit Nottingham at 9, Trinity Walk, Nottingham, until 12th August! Eleanor asked if she could have it for the month of Pride, which in Nottingham falls on the 30th, which made me sooo excited, as it feels like I haven’t shown any art since Peace Week 2014. The Trans-ally quilt flag has been strutting its stuff at some protests, and sadly at the vigil for those killed and wounded at the Latinx night at Pulse, Orlando. I’ve added some delicate ‘spinner’/ twizzels in red,orange, pink and purple with sequins to DIOS to commemorate those whose lives changed forever that night. I have PTSD and fibromyalgia brought on by PTSD, so my thoughts are very much with the survivors who will be needing support in a country that charges enormous amounts for therapy as well as physical medical aid.

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Tonight, I’ve been reading about the third death in 48 hours of a black man, killed in front of his partner and children, by US police officers acting without cause. Tomorrow is 3 weeks since the British referendum result was announced, where a crucial 3% more voted to leave the European Community [and thereby capsize the British Economy, unsettle thousands of longterm/permanent EU residents, lose Britain thousands of necessary workers, and bring armed borders back to Northern Ireland] than to remain… because many of them believed this would stop immigration by asylum seekers from wartorn Syria !!!

 

DSC_0030The level of racism, anti European xenophobia and financial lying that the Leave campaigners used has become the backbone of a campaign by lawyers, scientists, economists and generally people of wider understanding to make sure the exit isn’t carried through. As a disabled person, exit would be a disaster, as a person who considers herself European and a global citizen, I am so ashamed of the level of belief in flawed media and election lies, and now, the wave of racism, xenophobia and just plain nastiness of so many. Leave has promoted racism as ok, and now every day, ‘minor’ incidents of verbal abuse through to smashed windows and most worrying, arson, have been happening. DSC_0039

Diversity was made thinking about the different strands in our DNA, the many fine threads it takes to make a thick rope, the 108 ethnic minorities within the community of Nottingham, the need for unity within the LGBTIQA communities… I’m bi, and I remember being asked to leave a lesbian night in Newcastle because of that, even though I was there with my girlfriend; I never assume gay men will understand underclass politics because so many of the ones I have met have pink pound privilege and old boy network contacts that mean they feel insulated from prejudice; I was spat at by a lesbian for defending transwomens’ right to access Nottingham Women’s Centre. However, I try very hard not to hold grudges, and I will always work towards unity where I can, and it baffles me when people don’t see through the mischief-mongers, trying to divide us while they literally Queen it at the top [her Maj earns as much from her properties as the UK Parliament awards her, and more from so many other sources, why ARE we funding her?] or coast along in their £2million cruisers bought from BHS pension fund plundering… etc etc. The Murdoch Media Empire is very much to blame, the weak opposition allowing so much bad policy to slide through unchallenged, but even so… why are people so willing to believe anyone other than the top elite are to blame?

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I make beautiful pieces in a freeform process because I MISS beauty and integrity in everyday life dealings, I grieve that we are served so poorly by the MPs who mostly forget their constituents [honorable exceptions being the shining lights Jeremy Corbyn, Carolyn Lucas and Mhairi Black] and I work slowly because of my disabling conditions. I spend a lot of spoons on making art, quite a lot of money, [all those bargain queen tiara buys add up!] and call in favours when I am installing – thanks Sam!- and all because I want the results of that process to remind people better things are possible. Inequality is not inevitable, it is the result of choices all of us make, informed by our skills in deciphering what is around us. Some things are just plain wrong [racism, any xenophobia, any bigotry, any abuse of others] but what tools do we have to pit against them?

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I feel arguing shuts others down, I would rather catch their mind, as I catch their eyes in a riot of colour that turns out to have an internal order that accepts and honours DIFFERENCE. There are quotes on posters around the work, part of its site specific installation this time round [it’s been at Nottingham Pride in the Arboretum and in London for Loudest Whispers 14] and they make concrete that message of DIVERSITY IS OUR STRENGTH. We’ve never needed to hear that more, to take heart that we are not alone knowing that it is a truth we must live by, and that it carries great beauty with it, great comfort and harmony and a place to heal, a home truth that places us at the edge and the centre, all at the same time.

 

the blues that make me happy

 

One of the surprises of immersing myself in quilting/patchwork has been finding which fabrics call me: I was an abstract painter for 10 years, then had to take up installations again, this time made with fibres…but still very abstract. The fabrics l like for quilting include a lot of ornate Jacobean style fabrics, paisleys/ botehs, and lately, Delfts and Chinese Blue ware, and even Willowplate🙂

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The postie has been bringing me parcels of celestial blues and today I finally get to cut into some! Ebay has been very useful [ahem, as long as I stop now!] for bargains, feature fabrics and a couple of days ago the perfect backing material, a Prestigious Textiles Ginger Jars pattern in cobalt blue on white.

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It’s taken me a long time to settle on a pattern…partly because the fabrics are so beautiful – it’s much harder to cut into expensive and powerfully patterned materials. Laying some splashes and a wash helps ‘break’ a pure white canvas, but there’s no real equivalent for fabrics! Part of the problem was feeling I wanted to handsew, but cutting the hexagons at the same size I’ve used before wouldn’t display some of the picture fabrics well.

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Choosing an enlarged 9cm per side hexie for those, and then interspersing smaller hexies with the extended 1/2 hexie frame solves that, but oh my, that took a long time to figure out! There are so many possibilities for quilt patches, blocks and patterns, choosing can give you decision fatigue!

Due to fibrofog, I need to keep the pattern simple – I stitched some rosettes together last night and saw this morning one is upside down, grrr. I either unpick 5 seams or live with butterflies and trees upside down to each other.. avoiding that sort of mistake would be good😉

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Again, because the fabrics are so beautiful, the pattern can be very simple – these blues are singing!

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