Posts tagged ‘fibromyalgia’

stop and start again

CN: PTSD, ‘domestic’ violence to women, hearing voices

Lots of ways to read that – one meaning is that the internet wifi has gone down irretrievably and my one hour callback from the tech dept arranged by customer services after the first fail [tsk tsk] still hasn’t come 9 days later.. my new router from a different company should arrive sooner than that though πŸ˜‰ meanwhile a 5m ethernet cable from the Β£shop is making internet access possible, though not comfortable.


I’ve had an emotional break-apart/through too, I have had a painful experience in taking on too much and having to excuse myself… I was tagged to The Women’s Quilt, a very brave endeavour, where there will be a square for each of the 589 women in Britain known to have been killed by a violent partner, father, other male relative during the period 2009 – 2015. That’s 2 a week, in a relatively small country. I volunteered to make some squares, though finding out we had to do the research ourselves on the women was where I should have dropped out. I assumed there would have been a collaboration with the friends or next of kin over what they would like a woman remembered for. Having to read up about 8 women and a 16 year old girl’s horribly violent deaths and try and find any source of information about the woman other than as the victim was very difficult.. every newspaper covered the number of stabwounds etc very few said ANYTHING about the woman. The Facebook page became filled with heart rending stories as more people making squares shared how terrible the deaths were but also how horrible the gaps are… The admins were careful to tell people to protect themselves and only take on what they could, but the constant reminders via Fbk notifications were upsetting – yes I turned off the notifications, it takes a couple of days to take effect… I managed to make 4 squares, two of which are very plain because there just wasn’t any personal information. One woman was about to go swimming so I made her a mermaid


another was the concert pianist Natalia Strelchenko, so I found some music printed on fabric for her [ it’s The Holly and the Ivy, but needs must..]


I was really surprised how much this experience shook me… I think to be fair if I wasn’t already upset by my brother-in-law dying [the oldest and last of the three brothers, my poor mother- and sister-in-law] and his wife now being seriously ill in hospital, my therapist of the last 11/12 years having suddenly being diagnosed with cancer again and having to stop work, a friend being diagnosed with non-Hodgkins lymphoma… then it might have been less upsetting. Combined with my personal griefs, the Trumpland woes and Brexit suicidal xenophobia… I just felt very ‘precarious’, a word I use when I feel the PTSDs are running amok and I can barely hang on to the wild horse of survival… I’ve made it, and learnt – yet again – that pacing is some tricky shit.


I feel I need to withdraw from Facebook and use it much more carefully. I signed up as an artist and then Facebook made me have a personal account and a ‘business’ account. It’s a useful tool and a tyrannical master… my friends have a broad range of politics, so my home/feed is full of bad news with the occasional positive…no one means to be negative, but that’s a lot to hold your self and daily purpose against. While I was feeling ‘haunted’ by the details of the deaths, mixed in with life stories of others and my own experiences of violence and helplessness, I felt bombarded by all the bad news in the world, how the right are rising and fascism may overtake Europe and the US… and as the feelings of uselessness rose, I was rescued by the reminder [yes, voices in my head πŸ˜‰ ] that you can only do your OWN work, that in the face of death and destruction, all I can and must do is make art, however I can. It was amazingly reassuring…

somewhere else

I can’t only make art of course, but if I accept the loving reminders of politically aware friends like Uditi Shane and Jennifer Moore, then my art IS enough of a protest to make… and the rest of the time I need more mental space, I need to have more space to experiment and be playful. Because life sends enough challenges without the constant flood of negativity the news etc brings. In my own words, “I am one 7 billionth of the problem – sometimes it’s ok to only be one 7 millionth of the solution”. I usually laugh as I say it, because it can be very easy today to feel we aren’t doing enough, and putting that perspective on it changes everything. I’m pretty sure even on a bad day I manage to do my share, because my ingrained habits of thrift, recycling, buying fairtrade, vegetarianism and giving to the foodbanks etc do that… During my internet hiccups, I didn’t miss Facebook very much at all – because I could connect for long enough to message friends but not long enough for general browsing or reading the feed, which I had come to dread. I read books, sewed towards the Empire piece, caught up with some dyeing projects, slept off the adrenalin rushes… and now I’m starting again, trying to follow Olitski’s excellent advice πŸ™‚



Best Intentions

Sometimes I feel like my life reads like the old poem ‘For want of a nail, the shoe was lost..’ I was quite looking forward to running through all my distraction pain respites… instead, l am just distracted! The router has been targeted by malware and the company sent out instructions how to re-start it safely. Excellent, except that the Windows 10 laptop shies like a skittish horse at the least thing, so l have now been locked out for a month from lots of photos and files, because the cursor has frozen. I’ve had a very bad chest infection since xmas day so my quiet retreat time where I would gird my loins and fight the dragon has in fact been a time of psychadelic travelling at top fever with bizarre and interesting dreams… but no tackling delinquent laptops. I am coping using my Windows 7 though it drops twice a day as it can’t cope with Flash adverts [?] and l have to keep stopping the program… my mantra of ‘I am an artist, I can do this’ stutters to a halt when it comes to computer issues, as you will have realised… I am far better than I was at computer trouble, I would literally weep even a couple of years ago, but now I include it in my pacing, and take any computer problem very slowly. I have 2 laptops and the 7 is fine for most stuff and the keyboard is much more ergonomically laid out than the 10, so gradually I have become comfortable [too comfortable?] with shrugging and leaving it for another day.


There’s a personality shift most of us with chronic illness have to accomplish, whether we want to or not… how well we do it can determine a lot of self esteem issues as we settle into the long haul. I used to be a whirlwind of efficiency and output, unless brought low by agoraphobia or PTSD symptoms. I staved a lot of those symptoms off by overworking though, so unlearning all that, learning how to present myself in a way I could stomach as a person of good intentions but now unguaranteed reliability was not comfortable, at all. I was brought up that your word is your bond, and instantly understood the Quaker/Friends position that swearing on a Bible in court is unnecessary – your common word should be as true as your highest oath. Hearing fights on the street on the council estates where really often a parent would swear “on my baby’s head” would make me wince, as so often it was clear it was a lie, and what does that say about how you feel towards the child? Anyway, any perceived slight on my integrity goes down like a lead balloon and can make me steam from 0 – 60 in temper! So how to become gracefully unreliable?


I have just hurt someone’s feelings by being unrealistically optimistic, so this is very much on my mind. Disabled people often have contrary needs, that cannot be reconciled. No one is to blame when blind people benefit from bumpy pavements and chronic pain people are in agony over them… well that’s not true, but it’s city planners who need to set up a code for righthand bumps, lefthand smooth or something, not the two groups with mutually exclusive needs. I have had friends who are asthmatic before, but this new friend needed the window open – as someone who avoids draughts like the plague I had to think for 3 minutes to even remember a window that would open – this was a new one on me. They also needed the gas fire low. Trying to be supportive in that dreadfully unsettling week before Xmas I had them to visit twice, with the result that my right leg neuralgia has now gone from a very slow growing pain patch in the middle of my thight, to a hip to knee Tazer shock, let’s roll in broken glass and see how you like that festival of pain. Damn… the acupuncture/chiropractor has basically said he thinks that’s irreversible, once it makes a new pathway, you have to work to not trigger the pain ever again. Bad words hover above this paragraph, little blue devils with pitchforks, grrrr…


This goes two ways, most people think of the ‘helper’ giving attention, but over the years I have done a lot of listening /attention giving and one of the most frustrating responses I get, that is a complete red light, is when the ‘helpee’ does not pay attention! When someone wants to wallow in memories of a happy past, it’s very understandable and easy to feel compassion for that loss and the energy needed to build anew. Hopefully that past life has the seeds of the new lifeΒ  in it – eg bereavement, the life AFTER, not without, how do we make daily connection with the best of that life together to fuel the new life; losing a job, how do you go about making the best new work opportunity you can etc etc.

The new situation I was presented with was someone nostalgic for what sounded… um… unrewarding/ shallow/ money driven/ fashion label driven/ snobbery and mockery of anyone not in the clique. Errr, picture me a chameleon on tartan πŸ˜€ Never again will I boast I can find the positive in anything!! Turning in my relentless optimist badge now πŸ˜€ Oh my.. I felt terribly sad because this person is very depressed at the moment, but I couldn’t find anything to pick out as a guide for the next stage, at least nothing that landed at all well. I discovered I have very little tolerance for people who want everything done for them and no interest in helping others. My compassion turned to irritation pretty fast when I realised that as I had been trying to help, I was now being blamed for having no answers… Lesson for me: be careful about saying stuff that sounds like a promise… extra-ordinary rules may apply and then you’re up a gum tree.


I’m aware my boundaries have vastly improved because of two circumstances: becoming an artist, and becoming disabled. I have no tolerance for people I perceive as stealing my art energy or raining on my creativity parade – or anyone else’s to be fair, be sure you can do better before mocking someone near me when they are doing their best, and even then be prepared for the query, ‘why do you have to bring them low to make you enough?’

I have weeded out or trained anyone round me – or gratefully relaxed into their excellent boundaries around disability/ pacing – and I have a great circle of friends now. Partly because anything less can’t work for very long, with so many spoonies in the circle, we have great tolerance and affection for each other’s needs and set things up so there’s a lot of flexibility and understanding of contrary needs and taking turns and pacing and the wellbeing and well-intentionedness/ integrity of all.

Even with good intentions, you can mess up, and I have a bit, that ‘no good deed goes unpunished’ feeling… but I feel I might have really learned a good lesson this time on accepting my limitations, and the need to look before I leap. Shared values make for strong mutual support, even if you have contrary needs; contrary values make it very hard to make anything. Here’s to a year of good intentions though – I travel hopefully, and hope you can too πŸ™‚







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,Β  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 πŸ˜‰



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.

CHIROPRACTICΒ  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 πŸ˜‰ always be the most interesting patient you can, all kinds of good comes from it πŸ˜€ ] 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!!]Β  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.


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?Β  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 πŸ˜€


OXYGEN THERAPY IΒ  read this article

– 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 treatmentΒ  [check here for yourself ] 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 πŸ˜‰ 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 Β£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?]Β  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 πŸ˜‰ 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 πŸ˜€ 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 πŸ™‚


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 πŸ˜‰ 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 πŸ˜€Β  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 Β£10/hour and I feel Β£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..


MEDICATIONS – this is probably what you were expecting for remedies πŸ˜‰ 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 πŸ™‚ 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 πŸ™‚ 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’.


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 IΒ  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 πŸ˜‰ 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.

Diversity is Our Strength

diversity online

I’m soΒ  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.


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 Β£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?


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?


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 πŸ™‚



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.



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.


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 πŸ˜‰


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


new directions

I’ve been having a flare, brought on by filling in the ESA benefit form: telling unsympathetic people how impaired your abilities are nowΒ  for 20 pages is not good for morale. PIP forms are even harder and should be filled in with the help of a welfare advisor so you tick the right boxes, phrasing can make a big difference!


Getting over the side effects of withdrawing from Venlafaxine was easier than I expected, probably because I managed to make a good care plan, but also a dollop of good luck πŸ˜‰


One of the tactics I used was a new craft project: handsewn patchwork. New…although I have very fond memories of sewing at middle school where a group of us gathered to sew at lunchtime…I used to be able to sew with either hand and can still sew in either direction, though I tend to sew right to left. Perhaps from the Jewish tailors in my grandfather’s family! I like to think so, I’m certainly a lot neater stitching by hand than by machine where art takes over πŸ˜‰


I discovered just how relaxing it is to scroll through pages of fabric remnants on eBay, and how much less relaxing it is running through my budget at the end of the month to see if I can pay PA after rent day! EEK! I definitely have a slight problem there… the trouble is none of it is undirected, no buyer’s remorse, I love everything I chose and have projects for it all, I just need to regain my trust that other equally beautiful fabric will be available later… an abundance issue… not helped by that demoralising ESA form, or by friends being very busy, therapist away on training, chiropractor away on a visit etc etc but meanwhile any stress was easiest met by looking at all the lovely fabrics. I had a breakthrough when a search needed me to go via Pinterest and I finally opened an account there. Now I understand why friends find it so therapeutic! I can save all the lovely images there, and NOT on the watch list!


There is recent research showing looking at beauty in nature or art is very healing/creates a very positive mindset*, so I comforted myself that at least I was filling my mind with lovely ideas, and as long as I actually made/completed things, all would be well – trust the process!


So finishing my first project has been great, and then having to choose between 3 new projects less so, but getting settled into the next one has been lovely.


And then yesterday I started seeing lots of possibilities for integrating these very beautiful, very finished fabrics into mixed media collages. They could start with a quilted or patchwork base and then free form out with feathers, beads, my usual ‘more is more’ embellishment approach πŸ˜‰Β  I’ve always found it very hard to integrate large patches of very finished cloth or paper into my collages, it seems like stealing or relying on other’s skills, appropriationist… but I am starting to see how the art of the quilter is to harness and enhance and balance those different forces, to make a cohesive whole out of those wild horses, pulling in all directions…One of the reasons I have bought so much I suspect is that my stash was of fabrics still too strong for me to tame πŸ˜‰ It will be much easier to start with florals, paisleys/botehs**Β  and abstract tie-dyes than very stylized/design heavy pieces covered with another artist’s stamp…

Meanwhile Nonie has no problems expressing dominance πŸ˜‰ I should take notes!





gold lining



I’ve been having a lot of luck recently – bad luck with med change and detaching my knee cap from its tracking [ow!] but also good luck with crafting supplies. I mentioned to Cherise the quilt I admire [Passecaglia, drool] but could never make because it takes an immense amount of cutting out, not just ordinary or frugal quilting where you trim, but ‘fussy cutting’ where you find particularly pleasing parts of the design and centre your template on them. You don’t have to waste the rest of the fabric, but you often cut in a long way to get a small piece, several times, and that becomes a lot of repetitive strain if you’re susceptible, which I now am. There are amazing cutter gadgets you can get, but they start at Β£100, which is a lot to pay when l’m not sure how much it would get used.


A few hours later, Cherise messaged me that a local crafters Facebook group had a secondhand Sizzix Plus on offer for Β£25!! I immediately messaged the seller and she kindly dropped it off the next day – happy dance! Now this was the weekend before Xmas, and I knew I’d need cutters as the seller was upgrading, not abandoning making. The mangle bit is fed a sandwich of cutting buffer sheets, a VERY SHARP cutter in the shapes you want – and for paper, some of these are amazingly complex – and the paper, card or fabric. So I betook myself to the tintanet and with Cherise’s expert help [she used to do classroom support at a crafting place] chose hexagon cutters for the paper templates and separate ones for fabric.. and then, cos, well, they’re amazing, I got these:


to make pretties with πŸ™‚

They all arrived before Xmas, and when Cherise could show me how to use them! So I was all set up for my quilty retreat, I’d found free downloadable graphpaper for hexagon quilting and we printed off a dozen sheets.

the link takes you to triangles, but they offer music paper etc.

The fabric company I buy from regularly gave me a Β£10 voucher for my birthday, and the parcel had been delayed, due to lazy or stressed delivery peeps ignoring the directions [access via is a BIG clue when you can’t find the address on the top line, sigh] but I had finally collected it without the delivery card [takes soooo much proof when they put the postcard somewhere you can’t get it!] so, I was all set!


but when I was buying the hexie cutter, I saw this charm pack, a set of 30 different fabrics in 10cm squares, and suddenly I wanted to make a quilt based on the the cloisonne/ Kona Bay style Japanese fabrics…




Perhaps because I painted in a very abstract style, I’ve always had a ‘guilty pleasure’ feeling about liking this style so much… I don’t wear jewellery now except my wedding ring and a jade necklace Andy gave me, but when I had my ear pierced I wore enamel star and moons in this style…

So, by now I was feeling very abundant with this feast of good luck and good timing, and an exciting new project, but it kept rolling! For the first time I went on eBay, and found some lovely fabrics in this style, and even tentatively placed bids [ what, with no adult to supervise?!]Β  which promptly won! One of the colours was way out, it showed black and arrived green, but that’s screen resolution for you, one of the photos I took of it reads black. Anyway, at a quarter of the normal price, not a problem πŸ™‚


All three parcels, even the one from Thailand arrived on New Years Eve, which was a lovely sunny morning here, and I had the loveliest time stacking the fabrics for tone and colour matching, and feasting on all that gold lining…




Yes, more than a silver lining in my clouds, I have gold, kintsugi.

I have a cracked knee that hurts like you wouldn’t believe, because it has triggered a neuralgia/sciatica ‘burning wire being dragged through my leg’ pain, but I also have a pile of 105 hexagons, cut in 25 minutes with effortless ease… and paper patterns to colour in and plan …and finding a way to make things easier builds hope that there may be other bits of luck just waiting around the corner…



and the best way to help painkillers to work is to find a distraction, and so… they are..