Threads of Empire by curator Dr Onni Gust

excellent introduction to the exhibition, and how the available archive materials shaped the format, but how informed intersectionalist research shaped the critique:


Threads of Empire

The opening event for Threads of Empire was well attended and full of friends – I didn’t get my crafting out once ๐Ÿ˜‰ I had some lovely conversations and hopefully some networking will bring in more members for our textile/mixed media artist group.

Apologies for poor quality images, I want to go back and take better photos and even watch the video I’m in, but Nonie had to go to the vet and I’ve had extra appointments, so I am woefully behind… the event was quite crowded so I didn’t even get to see many of the historical exhibits, let alone get my camera out!











Process art: creating a response piece

This post explains how I came to create my piece ‘Tangled Freedoms 3’ in response to the archive materials in the ‘Threads of Empire: rule and resistance in colonial India’ exhibition, opens April 12th 2017, Lakeside Arts Centre, University of Nottingham.

Singing Bird Artist:

Immersing myself in a subject [topic/ material/ dream] and finding out what my hands want to make as a result is my normal process – Sea Change [see videos] started from a dream but involved a chase through Greek mythology and the role of coral in climate change research, while Organic Process started with 3 particular yarns and went some unexpected places [painting vintage buttons with nail varnish?!]


As soon as Dr Onni Gust told me some details from the archive materials I was fascinated ๐Ÿ™‚ [not sure if I’m allowed to quote – but believe me, as an intersectional feminist and anti-racist, the items chosen are very interesting, and as a textile and fibre artist interested in clothing and costume as signifiers… ooh! Come see it!]


Onni recommended some background reading about the period, which was very useful, as though I know a certain amount of colonial history, I’ve always been a bit hazy on the details of the British East India Company. I wasn’t allowed to do History at high school as my godfather taught it and he thought I’d be cheeky [me?!] so I’ve been catching up ever since. I hadn’t realised how the first ‘traders’ were very likely to be merchants and middle class and self made business men, anxious to move up in society, but also staff landing their dream assignment, to be scholars, Islamophiles, loving the Iranian poets who shaped so much of Moghul cultural values, or fascinated by the beautiful sculptures and architecture of Hindu tradition. The more I read about those men’s adventures in crossing over into local culture, making political alignments but also romantic liasons and full marriages, bringing their wives and children into the British aristocracy…the more my impressions of that time had to be unpicked.


The French East India Company were rivals at every court for the favour of local Moghul or Hindu royalty, who were fantastically wealthy by European standards, a letter in the exhibition details the gifts a party of British visitors were given in 1742, hugely lavish, humbling the Company officials… The French were a new republic, offering a larger army of mercenaries to local sultans, and some of the trade wrangles were as much about Paris and London as the Indian courts…


Fabrics were an important part of the East India Companies’ wishlists… the Kashmiri shawl was a status symbol among the upper middle class in Britain, and the shameful history of how the boteh was renamed paisley after the Scottish textile mill town whose fortune was made on cheaper copycats of Indian skill should be taught on every textile course…


Muslim art is abstract – images of monkeys, dogs and humans are particularly offensive, something I bear in mind when making quilts for refugees and the geometric and arabesque flourishes of their textile designs far outshone the toiles de Jouy and chintz flowers, both in style but also vibrancy of colour and tone. Hindu dyeing and printing techniques were ahead of Europe at the time, though Britain was heading into the Industrial revolution of machination, measuring and metering, huge mills where children would lose fingers and hands in the threading machines for Jacquards and spinning Jennies.


With all the textual research bubbling away in my brain, I explored which cloth and fibres felt like they fitted… It’s difficult to convey quite how my process is different to straightforward design, but there’s more generosity towards intuition… While mulling over the way my third of the triptych would possibly have to accomodate being above standing head height, I made my usual assemblage elements, machine cords. These take a few hours, depending how many I make, but are very useful for simmering ideas about colour, watching what happens, what works, what doesn’t, what suddenly gifts you a significant piece of the puzzle.

After noodling around for a while, I remembered some sari ribbons I had and started playing with them:


Gradually it became clear to me what the feeling I was to convey in the piece is. We had discussed how the triptych would allow space for our individual reactions – while hopefully making a harmonious whole. We were each energised by different items from the archive, though equally full of anger and grief at the deaths and injustices of the times… it took some time to narrow down our concerns to generate a name for the triptych that would fit our separate responses, but finally Tangled Freedoms was the agreed title. Then everything opened up again as we discussed what techniques we were drawn to, what colour palettes spoke to us… I chose aqua blues and sand, from lemon through to topaz. Having spent a year making patchwork as part of pacing and managing anxiety, I decided to challenge myself and include it in my end piece, as a base layer, with fibre and thread layers above. These fibres are from the gauzey muslin I chose as my fabric to be dyed by P.Chezharb, and they’ve done a beautiful job, rippling tones within the core colours…


What I feel most strongly after my research is how tangled everything is – there is straightforward exploitation of the resources of India and the common people, but as soon as you look at individuals, layers and twistsย  and turns emerge. Everything revolves around the court protocols; the concerns of the East India Companies; but then there are the harem women dressed with freedom, behind their mashrabeya screens, the European women free to travel with an escort, but in their personal prison of stays and corsets, neither free from the threat of violence and death if they strayed too far from what pleased the men they were possessions of; the servants of the Companies, caught up in massacres caused by rank stupidity and bigotry; the scholars wanting to explore their long cherished dreams instead supposed to defraud and unsettle their hosts; the hugely wealthy rulers being threatened by the decline of their autonomy and the de-stabilising efforts of European governments… who here is free? The Europeans died in their hundreds, many in the first year. No one can act without consequences, most are walking tightropes under pressure from government or ruler or husband…meanwhile the saddhus sit naked by the rivers, dazzled by the shining, rippling waves and own nothing and are owned by no one. The only people free to do as they please have no power. Tangled indeed…


The feeling I most want my piece to convey is the dazzling betrayals, ever shifting meanings and deceits, that all that glittered was not gold, the death and the dirt below the gold. The role that water played, the huge lengths of time between query and response, at least a year, and that was if no ship foundered. Often an official would be answering someone who was now long buried, merchants would be fighting the French Company for the best deals, while they wondered if Britain had been invaded by Napoleon…


Pauline Edwards has used text and images to recreate the fiery pyres of massacred Indian soldiers at Vellore, and Pol Chezharb has used a background of vivid primaries to invoke the life and death nature of these economic and political choices, but I still feel most struck by the air and water, open skies and miasmic marshes the British edged in from at Calcutta, the terrible sea journeys they risked to make money that could not save them if illness came… foolsgold for many, the founding of a colony that stole immeasurable wealth and unsettled world politics for at least 2 centuries, imagining it could be possible to do that without creating anger and a backlash that is still unrolling today… foolsgold…



exciting news: Threads of Empire

The University of Nottingham Weston Gallery at Lakeside Arts Centre will be hosting an exhibition from April 12th called ‘Threads of Empire: rule and resistance in colonial India.’,


curated by Dr Onni Gust [who writes about gender and Empire and women travellers of the 17 and 1800s see footnote ^] with RA and Phd student, Ibtisam Ahmed, who writes interestingly about Utopia and Empire, including on gender [see+]. They have brought together some very interesting archive pieces, letters, lists, reports of revolt..all with a common link of clothing/ costume/ cultural markers that I find fascinating. When Onni suggested I put together a proposal for a response piece with fellow textile artists I was really excited and energised.ย  After some discussion with my friends Pauline Edwards and P. Chezharb, we decided to form an artist collective called Infinite Threads and submit our vision of a triptych responding individually and collectively to the archive materials. Yesterday we heard we had been accepted and won a small grant for materials and expenses and a stipend, totalling ยฃ1,500! Great news! To give you some context, my last joint exhibition cost ยฃ450 to install at a private gallery with NO support for materials… happy rollie* dance!!


Now here’s the thing about being an artist with chronic illness – a turnaround of Feb 1st to April 12th is very daunting nowadays… because once I’d read the archive materials shared with us, I had a design float into my mind that would be a personal challenge. Nothing like keeping it interesting ๐Ÿ˜‰ I’ve been working towards blending fabric collage into a form of painting for a while, and here is an opportunity to create a ‘jump’ piece where I do that ๐Ÿ™‚ I started making machine cords and then patchwork for different layers in my piece a few weeks ago, and was so eager to start, holding back has been very hard…


So I had a very strong commitment to making this piece for a few reasons – and I think you need that as an artist, because you certainly don’t do it for the money ๐Ÿ˜‰ We had some group discussions about how we felt individually, what material was most interesting to us and any initial visions of how we’d work – there has to be a lot of flex at this point, as one of the things we three share as mixed media artists specialising in textiles [we all have City and Guilds textile works training as well as art skills/ training] is that touching the fabric changes so much. The feel of muslin changes when it is dyed, the fold, the fall, the heft… so much art now ignores how what we touch, what we feel, influences our making. Art is not just cerebral, it has heart and guts, juice, energy… brainwork is one part, but to a textile or mixed media artist, or sculptor and many painters, only one..


I like working with colour blending, creating volume by tearing cloth, putting thread and fibre to work create new fabrics, working with shadows and silhouettes. I tend to stay abstract and trust my process, absorbing lots of visual and a fair bit of textual research so that when my hands start making, there is something my brain/psyche wishes to ‘download’ into the materials in hand. Intensive contact and co-operation between hand, brain and fabric creates interesting work, better than if I actively designed in a more cerebral way, imposing a concept on the materials, subjugating them.


Pauline dreams her way in, working with text or an image that seizes her attention, allowing a lot of responses to arise and then working down into them as she applies dye or paint, tranfers chosen text, and finally storms the canvas with her machine loaded with threads galore… she once worked 18 hours straight round at my house when she was making a commissioned quilt to celebrate the 105+ minority communities of Nottingham… the piece stretched from my [empty!] fireplace to the back of the sofa, over 10′ square.


P. Chezharb creates wonderful painterly surfaces using Procion dyes, and then adds mixed media to them. They are creating some of the fabrics we are using, and then their own part of the triptych will focus on their response to the letter describing a British woman’s visit to the local dignitary’s harem from 1742, and the struggle to end sati [suttee, the burning of widows on a husband’s funeral pyre] which still occasionally occurred even at the end of the 20th Century.


I’m going to post more as our works emerge, and explain more of our backgrounds – between us, we have ancestors and recent relatives who were forced to move by slavery, pogrom, persecution by faith, the Highland Clearances, an Asian experience of leaving Tanzania for Britain, the Windrush migration from Jamaica… we are interested in where the intersections of freedom of choice and freedom within circumstance fall, what we can make as message, protest or affirmation for ourselves and our communities of choice and circumstance…when we can make beauty, and when ugly is part of a necessary truth.

*rollator, a seat on wheels I push to help to help me walk [33% less effort] and then sit on as frequently as necessary, which is pretty often.

^ Dr Onni Gust , current research : Home and Exile in the British Imperial Imagination focuses on ideas of “home” and “exile” in the published and unpublished writings of a network of European-imperial thinkers, looking at how their gendered performances of belonging reconfigured the meaning of nation and Europe.

+’Clothing the Other: The Use of Fashion in Pursuit of a British Imperial Utopia’ by IbtisamAhmed



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 ๐Ÿ˜‰ meanwhile a 5m ethernet cable from the ยฃshop 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 ๐Ÿ˜‰ ] 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 ๐Ÿ™‚


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 lifeย  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 ๐Ÿ˜€ Never again will I boast I can find the positive in anything!! Turning in my relentless optimist badge now ๐Ÿ˜€ 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 ๐Ÿ™‚







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,ย  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 ๐Ÿ˜‰



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.

CHIROPRACTICย  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 ๐Ÿ˜‰ always be the most interesting patient you can, all kinds of good comes from it ๐Ÿ˜€ ] 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!!]ย  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?ย  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 ๐Ÿ˜€


OXYGEN THERAPY Iย  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 treatmentย  [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 ๐Ÿ˜‰ 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 ยฃ10+ 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?]ย  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 ๐Ÿ˜‰ 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 ๐Ÿ˜€ 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 ๐Ÿ™‚


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 ๐Ÿ˜‰ 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 ๐Ÿ˜€ย  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 ยฃ10/hour and I feel ยฃ35 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 ๐Ÿ˜‰ 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 ๐Ÿ™‚ 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 ๐Ÿ™‚ 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 Iย  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 ๐Ÿ˜‰ 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.