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definitely was and knowing they were potentially sitting back with their arms folded thinking well let s see what she does i felt the most able bodied i had for years inadequate slightly uncomfortable and desperately trying not to say the wrong thing and for a lot of people out there who are not disabled this is what it all boils down to i m not saying that ill treatment and prejudice don t exist just that lesser forms of disablism that we could potentially help with are out there of course any sort of discomfort with disability needs to be addressed but perhaps if we could go into more exchanges in the spirit of sharing information and fostering understanding we would achieve more than we ever will by getting angry and defensive god knows it s taken me years to get rid of the chip on my shoulder realising that some people will never understand some can be helped to understand and some positively want to understand ultimately means that you don t stay angry with everyone and it also means you can focus your energy on people who can and most probably will make a difference posted by seahorse at 12 20 10 comments friday 1 january 2010 park iii through the railings posted by seahorse at 19 45 no comments park ii winter structures working in harmony posted by seahorse at 19 41 2 comments new year s day a walk in the park on new year s day posted by seahorse at 19 22 no comments thursday 31 december 2009 what am i living in a twilight world between the well and the ill i feel not entirely comfortable in either sphere words like recovery improvement and cure don t sit easily with me there is no such thing as recovery as we can never recover what we were before illness struck illness changes us and it is to be welcomed for doing so we grow and gain insights that we never had before improvement suggests that what went before was in need of enhancement in some way i don t know it s certainly an improvement to be using my wheelchair less and driving more in one respect but was my status as a wheelchair user and public transport regular something that needed improving i suppose i ll settle for the fact that my health is improved in some respects cure no such thing not with what i ve got i prefer to talk in terms of windows space phases cycles it makes more sense ups and downs plateaus peaks and troughs so why am i moaning about improvement progress whatever you want to call it i don t feel so connected with my blogging buddies because i have been too busy being better to blog regularly i got a first in a recent ou course and am very proud of the fact that i acheived 92 per cent in the exam i have pretty much launched a small preserving sideline for friends family and neighbours and am thinking of doing it on a larger scale and i ve been more involved with my son making sure we have adventurous excursions and fun together and in doing all this i ve let a world that was supportive engaging and fun slip through my fingers facebook with all those past acquaintances only a handful of them actual friends is dull in comparison plus i feel very much in crip corner on there put me in a group setting for people with my condition though at our specialist nhs clinic and things are very different i was told i have superceded the point at which people normally join the group so i m now too well and boy do i know it no one seems pleased that i can do more than them people actually seem wary suspicious unfriendly and irritated each time i pipe up with some pearl of wisdom or other the therapist seems to love the fact that she has someone there who is living proof of the pacing therapy they teach actually working even though it was only a part of me improving i suspect some people in the group have become so attached to their toxic friend as i sometimes call long term ill health that they are not quite willing to contemplate life outside its clutches how else do you explain the reticence the sideways glances of course if anyone had suggested that i was too attached to my illness a couple of years back i d have flipped but was i i stopped calling it my illness for a start and these days i try and disassociate myself from any niggling symptoms like pain noise sensitivity etc with mixed success i kind of feel i am doing to get better rather than waiting to do all in all it s been a very reformative year and i am hugely different even tea with old friends yesterday felt different everyone sensed it no one quite knows where to place me all i know is i m in a place that suits for now and i m happy to build on it tentatively posted by seahorse at 19 35 9 comments saturday 12 september 2009 still here it may seem as though getting my wheelchair heralded the end of my blog nothing is further from the truth i may when i look back have experienced that sinking to the floor common at the end of a marathon though i don t recall any turkey foil and that may have led me to not blog for a while but actually i haven t been on the floor all that time i ve found myself adjusting to life being radically altered the thing is once you receive appropriate treatment for your condition all manner of improvements can be noticed so once my arms were no longer having to reach beyond their capabilities to steer a mobility scooter they ached less and were used more i have hugged and tickled my son more in the past few months that at any time in the last five years my arms no longer need pillow support at night i can give my hair a really good scrub in the shower and can do more potting on of plants in the greenhouse not that there s been much gardening that too has kind of been replaced lately i have cooked more typed more for uni oh and i joined facebook which has been interesting and indulged in brief bursts of an old passion diy or diy lite as i like to call it and then by accident i found that i could drive my mother s power assisted car i parked it for her one day and ever since i ve found myself borrowing it on occasion i went on holiday with my son to wales it took three days to get there and three days to get back we had a great time i saw the sea when i found a nifty tape device that hooks your ipod up to the tape deck via a cassette well i was in heaven somehow i prefer listening to music on the move it s strange but the fact that i can now listen to music at all is progress jimi hendrix at half volume is better than not at all and now i feel that the happy combo of motability car with necessary adjustments for safe and non fatiguing driving gear stick on steering wheel please and wheelchair is seriously possible so i am hammering my credit cards to get them paid off and next june i plan to be driving and possibly working because being able to drive and not be exhausted by it extends my work options being able to use my arms for more than a few minutes at a time means i may have the stamina for some kind of employment of course i may not all this more of everthing could lead to less in due course i ve been to work directions they ve dealt with countless people with my condition living in a large urban connurbation has its merits and they ve told me to do some voluntary work outside the home if at all possible and then to come back and see them in a few months to see how it goes no rush in the meantime i have decided against paying out what seems like a colossal amount of money for a life changing treatment so many people are talking about because when i assess my life i believe i ve moved things on myself and yet i m always aware that i could crash i could be back in bed for long stretches back back back going backwards going forwards back and forth i wonder whether this is a factor i will just have to get used to as i move in and out of periods of differing health and i wonder if the government departments i currently rely on will have to get used to it too certainly going back will hold far less fear and disappointment if i ve not been trained to rebuild in haste and never ever look back and parted with the best part of 700 into the bargain i wondered for a while if it was possible to get better this way now i don t really care it s not about getting better what has struck me lately is my capacity to enjoy things in the simplest of ways at face value yes being outdoors and more independent has helped that but equally so has being indoors and less independent as i write i haven t been out in the sunshine today or yesterday or the day before and that s okay too i m sure it s lovely i ll get there when i can posted by seahorse at 14 22 7 comments friday 22 may 2009 express yourself i thought i d leave it a week or so before posting about my new nhs wheelchair you know the one that took three years getting to me well it works and boy has it changed things i confess that at first i felt a little unsure the way you feel when you ve been trapped in a really bad relationship and aren t convinced you can love again that s how it was with my scooter i suddenly found myself ignoring all its faults dodgy suspension creaks impossibly long reach to handlebars sluggish poor battery life i could go on and found myself feeling nostalgic i fooled myself into believing that me and scoot had had a wonderful time and lump in throat i found it hard to look at her she suddenly aquired a gender too as she sat forlorn in the yard all those trips to the high street to get compost how would i manage that in a wheelchair more than two bags of shopping now impossible then a voice said get real and my eyes opened i was staring at a rusty heap of junk that had been impossible to manouvre in shops and had frankly done nothing for my image being maroon which is my most hated colour it had only ever got me as far as the high street which i now confess to trying to avoid on a regular basis which means avoiding exhausting struggles with large amounts of shopping and compost i have better things to do so with my eyes suddenly opened i found that leaving my scooter out in the rain was exactly what i wanted to do ah revenge with a plastic cover just in case i sell it on ebay what i love most about my wheelchair is the newfound and totally unexpected ability to express yourself in a power chair with such minutely sensitive controls that you could almost control it with your breath i have found myself having a strop yes storming off even turning on my heel and whooshing down the street wandering aimlessly my son went into a newsagents i couldn t access due to a large step so i was left to my own devices whilst he spent the best part of 20 minutes choosing sweets i found myself round the corner meandering in a courtyard full of bedding plants pootling up and down puzzling over the bargain that was buy one for 1 49 two for 3 going for walks my son and i have taken to going on an evening stroll and we ve had ice cream in the park this feels far more leisurely now that i have some options in between fast ish and sloooooow the nuances offered by those extra little dots on the speed indicator mean everything i have twirled in delight round and round in the playground because i could and because i feel so funky these days and the skater friends of my son were probably checking out my 900 two 360s and a 180 for the uninitiated and wishing they could in your dreams my wheelchair is black and silver it goes with everything i wear rather than nothing and more importantly it feels like part of me posted by seahorse at 14 59 9 comments saturday 16 may 2009 gardening still without moving part two i ll be honest and admit that what i needed was something far more soulful more engaging and rewarding and because i don t leave the house much i looked to my garden to provide and this is the strange thing why the garden i was never into gardening before i became ill so why now especially now that i can t physically do anything i don t know well perhaps i do i think it has a lot to do with spaces having my own space after so many years of being stifled needing a space to escape the overwhelming pressure in my life not knowing how to acheive this but wanting desperately to find out doing up a garden when you can t lift a watering can is a challenge it requires above all patience during the many long delays that occur when funds dry up and your health fluctuates i can only afford to get my tattooed gardener in for heavy work about twice a year after saving furiously it is incredibly important to me that my son and i have a pleasant environment in a really very unpleasant neck of the woods yes we can hear vandals and car theives from our house but as long as what i look at out of the window is beautiful i can cope better so phase one was to cut the hedges down from 12 foot to about nine across as well as high it seemed back in may 2007 and spend the best part of a year doing nothing else though my son did plant a herb wheel i was recovering from my relationship breaking down and had a pretty bad relapse with my health we got out and about looking at other gardens but largely i saved up some money for phase two we hired a man with a mini digger for 100 and had the whole garden rotivated it was the only way it was choked with brambles and terrible overgrown old shrubs then everything stopped again for months i saved up again and spent many hours dreaming of how i wanted the garden to be and then we were able to put in phase three a shed and some decking yes yes i know decking is passe common horrid but it s also great if you can t move about much it suppresses weeds and gives you a cheap and instant sun trap if you do your homework and work out where the sun lies in the late afternoon aaagh it looks ghastly in this picture and if i d stopped here i d have committed a terrible crime all of my own but that s the stage we were at for quite a while we re now into last summer there were no plants to look at other than what we d grown in handbags and filing cabinets and no path but we sat in the sun and i formulated phase four a path a pond some paint raised beds and this is where things really take off once the path was laid and the trellis painted and the hole dug my graph paper design started to take on a reality posted by seahorse at 01 10 2 comments older posts home subscribe to posts atom about seahorse seeking beauty beautiful words things places works people deeds musings on beauty as an antidote to ugliness in everyday life view my complete profile we want people to feel with us more than to act for us george eliot recent posts 2010 4 may 1 badd 2010 building bridges january 3 2009 20 december 1 september 1 may 6 april 2 march 3 february 3 january 4 2008 72 december 4 november 3 october 4 september 6 august 4 july 5 june 7 may 8 april 6 march 9 february 7 january 9 2007 136 december 9 november 10 october 14 september 11 august 9 july 8 june 8 may 11 april 12 march 12 february 22 january 10 badd 2010 blogging against disablism day may 1 2009 may 1 2008 may 1 2007 may 1 2006 powered by ringsurf 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