tag:blogger.com,1999:blog-64046593934682452902024-03-08T12:09:29.394+00:00Spoon Based Life FormUnknownnoreply@blogger.comBlogger10125tag:blogger.com,1999:blog-6404659393468245290.post-78812600617880460092017-09-17T02:35:00.001+01:002017-09-17T02:35:14.910+01:00A 'No' DayToday is a 'no' day. A day where I'm not obliged to do anything I don't want to. A precious day off.
Hi. I'm Jaime. I am an artist and maker, reader, writer, bibliophile and library assistant. I'm also a wheelchair user, severely, chronically ill and disabled - it's a long list but the basics are Ehlers Danlos syndrome, gastroparesis, autism, and severe mental illness. My middle name Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6404659393468245290.post-77419134863013513862016-06-13T15:27:00.000+01:002016-06-13T15:27:19.791+01:00Things I Wheely NeedEvery so often, I end up with a little thought knocking around in my head; tiny, but persistent. Everything I do, every move I make and every aid, adaptation or accommodation I have, it whispers
"you don't really need that, though, do you? you could manage without if you'd just try hard enough"
That. Thought. Is. Poison. Nothing else. Just the spite and bile and viciousness of all the bullies Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6404659393468245290.post-12106603245227497122014-01-09T16:40:00.002+00:002014-01-09T16:40:26.297+00:00So what's normal?My life has changed drastically again since the last time I wrote here. I'm now employed, in a job I love, constantly exhausted, more financially secure than I have ever been before, still ever-increasingly physically impaired, and the rotting corpse of my mental illness, which I thought was safely dead and buried, is oozing and groaning and attempting to rise from the grave. (I'm with Harry Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-6404659393468245290.post-88888094833749784212013-01-22T17:43:00.001+00:002013-01-22T17:43:55.481+00:00My MPI've been thinking about writing this post for months now. I've held off because I am afraid. Afraid of the reaction get, afraid of being sued, afraid of being accused of rocking the boat, making things worse for disabled people, of being on their side.
I don't think care any more.
I've already been deliberately trying to cut myself off from the campaigning stuff, though it breaks my heart to Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6404659393468245290.post-4057500280183964092012-12-16T22:54:00.001+00:002012-12-16T23:00:43.529+00:00FrustrationOh, FFS.
Can't get an answer from PCT about whether I can have funding to see Prof G in London. Can't appeal decision cos they won't *make* a sodding decision. Hate bureacracy.
Can't get anyone at local Rheum service to listen to me at all - if you don't have inflammatory arthritis or an autoimmune condition, you're too boring to treat, apparently.
Can't get a referral to someone to see about Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6404659393468245290.post-73002118161769091262012-11-22T21:09:00.000+00:002012-11-22T21:09:48.752+00:00DLA decisionSo, I got my DLA renewal decision in the post today.
High rate mobility, low rate care, for two years.
Not best pleased. I was scared they were going to take it away entirely because I'd started working, but my care needs have increased massively. LRC is seriously not appropriate any more and hasn't been for over a year.
I did apply for a supersession, but they made a complete fuck-up of it. Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6404659393468245290.post-62996837456680888632012-11-19T19:38:00.001+00:002012-11-19T19:42:22.469+00:00Spending time with my Dad, and pain vs fatigueI love my Dad to bits. He and I fought like hell when I was a teenager - the usual story of him wanting me to stay his little girl and me wanting to be acknowledged as an adult, plus a side of him being hugely stressed out and me going crazy.
These days, I feel like I've got my Dad back. We went Christmas shopping for Mom today - had good fun and a laugh, then came back to mine, and put the Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6404659393468245290.post-48048242921824609922012-11-18T00:10:00.000+00:002012-11-19T19:40:14.332+00:00On therapy and life skillsToday I have mostly been marvelling at how much I've learned about coping techniques, mindfulness, and distress tolerance. When they told me therapy would be a long process, I didn't realise that they meant about fifteen years...
I used to be vehemently against therapy. I was totally wedded to a purely biochemical-dysfunction model. In a way, I still am.
Therapy didn't 'cure' my mental health Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6404659393468245290.post-72497452299045415532012-11-16T22:36:00.003+00:002012-11-16T22:54:11.675+00:00Polling Station FailSo, after reading halfagiraffe's excellent post about access to democracy yesterday, I sort of exploded all over her comments section. Er, sorry, Becca....
Here's what I wrote about my experience of trying to vote in the PCC elections - the first election since I moved here, and thus my first visit to this polling station.
I've had a similar experience today. Perfectly accessible town hall Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6404659393468245290.post-18254094926968174552012-11-16T20:36:00.001+00:002012-11-16T20:37:31.057+00:00I finally have something to say.So, previous attempts at blogging have usually failed dismally, petering out after a few random and uninteresting posts.
More and more, I'm finding that becoming progressively more disabled, and now a power wheelchair user outdoors, has finally meant that I have something I want to say. A lot of things, actually - not all directly to do with disability, although a lot of them will be. DisabilityUnknownnoreply@blogger.com0