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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