My own disability fight continues. a fight to get a clear diagnosis No-one realises the stress of 'not knowing' WHY my body fails. People tell me it's not 'important' to have the diagnosis...but it is. It Is. myself and twin are now deemed to have a very rare genetic disorder. very rare...RARE. huh? is this helpful. no . dealing with a rare disorder not even written about, known about, seen before, might seem scientifically exciting. to us twins it's a nightmare. Why , because Irish health services are not that sophisticated...they just don't understand. they operate on a diagnosis they know, not RARE! RARE, for THEM, means 'made up by the client' and they treat you that way. it's hell.
Me in Queens Sq, London, UK February 2014 having tests.
Ann, my twin, being tested in Newcastle Royal Infirmary Dec 2014 UK.
We struggle still, to get basic services and a decent powered wheelchair. and next my twin's van, which transports us is 'dying' and we just DON'T have 30,000k to buy a new one. What will we do...don't know!
So folk between the uncertain world of 'Austerity' and our own uncertain health...what can 2015 realistically bring? We now in hopeful vein DO have a small campaigning team here in Greystones willing to raise funds for our wheelchairs...the van? ...that's another story...The people of Greystones rallied and this is truly fantastic.
I have ideas to make changes. but the last few years have laid me very low. I miss my friends in the UK. I miss Hackney. I miss my work. The sunrises, birds, sea are all glorious...but NOTHING replaces humanity. PEOPLE are the true soul foods. I need more ...
this is an excellent blog margaret and i have felt your written despair all year, and of course my own. i hope that with hard work we can try and get a care package in place for us in six months, this of course is more a 'wish list' and the only people who can do this, is our HSE. they have the ability to sort twins with a rare condition and their ability to be under the Disability Act and Equality Act, equal and able as anyone else, but yes, with a disability. They have been charged and are being paid to care about their clients, not abuse them.
ReplyDeletei wish you mags, to feel strength and that Ireland which has been a traumatic experience after your return will soon feel more 'home' i yearn that you may have this sense of excitment over your country you left at 17yrs and i hope your skills can be utilised in 2015, with a few more services in place you have so much to offer.