Posts tagged ‘managing chronic pain’

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.

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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?

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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…

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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.

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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™‚

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gold lining

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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.

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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:

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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.

http://incompetech.com/graphpaper/triangle/

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!

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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…

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drool!

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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™‚

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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…

 

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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…

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

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Progress report

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I have been having many small and irksome obstacles recently, against a background of settling in to the new meds – Gabapentin and then Lansaprazole again to manage the digestive system pain and gripes from the Gabapentin. The Gabapentin is worth persevering with because I am able to read non-fiction again! Even just reading a couple of books a week again has been great and my habit of small pleasures is boosted by new releases from favourite authors πŸ™‚ I feel we all need that, but the ones who need it most are now right against the wall, the Conservative Government is pushing as many welfare cuts as it can before it is before the European Court of Human Rights, for crimes against disabled people. People are dying because they cannot afford the Bedroom Tax on the spare bedroom for their carer, and now that the Independent Living Fund has closed, people will be found dead as people who need round the clock care won’t get it. Many more will die very slowly, each day increasingly painful as bedsores become ulcerated, wounds become infected and carers are allotted only a few minutes to shower and toilet with no extra time to change dressings and change beds… Hard Times in Old England, very hard times…

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Against that, my own problems feel petty, but it is worrying that going out one day for a few hours means sleeping for nearly a week, that making one day means being too shaky to stand to heat a ready meal. At the same time, I often feel full of ideas! About politics, about making, about creativity as the core activity for humans, and maybe even what Earth is for..insects and birds and fish all make beauty, with species like the bower bird making aesthetic choices that might challenge an Art graduate, as whale music challenges musicians and mathematicians… who knows?

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Anyway, I have been working on a piece in ‘woodland colours’ since before moving, chosen to be fun, freeform and easy to keep track of while moving. Suddenly it has a name: ‘The Vital Spark’! It feels like there is maybe a series unfolding, from Organic Process to a next one which I know will have crimson and lemon yellow in, and that’s all so far! The Vital Spark is about the happy point when a new idea flashes into being, lighting up the hearth of old ashes and mossy, greened-over bricks and logs… all those old ideas are the compost for the bright new shoot, which promises such hope, and makes sense of the dullness of winter, when life was creeping along in very quiet ways that were easy to be ignorant of while bigger events shook the tallest trees…

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Cherise came round and we talked about what finishing her degree course means and how art is making-led for some [us] and prestige gaming for others, and what fun bright colours can be and how textures can change readings.. and meanwhile our hands worked away and I had great fun playing with beads to embellish some old work that lost its way [mistakes!] and has now become a feature to bridge between the freeform crochet, found wood and bought elements of raffia and willow [remaindered xmas baubles and mini fencing.]

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