So, I don't really know if this entirely the right place for this post to go, but why not. I'm so upset right now, I can't even breathe.
I am one of the lucky ones as this condition goes. Having been worse with it, I feel blessed to have some health right now, to be able to do a little more than stay on the sofa. I'm in so much pain all the time with it (my hands/arms/fingers are particularly bad) but I WANT to be well so badly, I'll try ANYTHING often pushing things and making things worse.
On bad days my legs are jelly and I walk with a cane, but one day a week I put on a pair of skates, roll up and down a hall a few times (it's easier than walking and is good for the core muscles) and this incorporates a little gentle exercise into my week that I feel I could credit the little health I've clawed back to. It's a roller derby team and they're very accommodating to my illness. In exchange for their help, I maintain their website.
I am aware that my ESA is to be reviewed in April and I'm fairly sure I won't qualify as I am not as bad as I was last year. I thought I'd start now with finding some work as I HATE not doing anything and I am in the 18-24 bracket which has crazy high unemployment as it is. A PERMANENT 20 hour a week job as a Museum Assistant came up, basic sitting at the front desk role and I went for it via a company called Manpower. 52 other people went for it and I got it! I went in for my first day only to be told that it's TEMPORARY, 3-4 weeks until they change up and get a casual in and because I'd be earning over the permitted work, my benefit would stop.
It was 7.20 an hour for 4 hours of an afternoon, just sitting, reading as the museum was so quiet and maybe answering the phone twice in that time. Wages are higher in the south so finding something that meets the permitted work requirements of 16 hours a week (if you work dead on 16 hours, that's too much) and at minimum wage to meet the 97.50 a week limit is nigh on impossible. Lower wage work consists of wholly manual work which is impossible with this condition
(
I'm so angry as I could've managed the job itself. So, I quit at 3 days so as to not exceed the "permitted work" limit but I still fear that this will have messed things up and have negative repercussions.
So help me, I'm not even depressed, but ending it all just seems exceedingly logical of late. I am not sick enough to be "disabled" but I am not well enough to be a valid member of society and I am SO SICK of the in between.
I am one of the lucky ones as this condition goes. Having been worse with it, I feel blessed to have some health right now, to be able to do a little more than stay on the sofa. I'm in so much pain all the time with it (my hands/arms/fingers are particularly bad) but I WANT to be well so badly, I'll try ANYTHING often pushing things and making things worse.
On bad days my legs are jelly and I walk with a cane, but one day a week I put on a pair of skates, roll up and down a hall a few times (it's easier than walking and is good for the core muscles) and this incorporates a little gentle exercise into my week that I feel I could credit the little health I've clawed back to. It's a roller derby team and they're very accommodating to my illness. In exchange for their help, I maintain their website.
I am aware that my ESA is to be reviewed in April and I'm fairly sure I won't qualify as I am not as bad as I was last year. I thought I'd start now with finding some work as I HATE not doing anything and I am in the 18-24 bracket which has crazy high unemployment as it is. A PERMANENT 20 hour a week job as a Museum Assistant came up, basic sitting at the front desk role and I went for it via a company called Manpower. 52 other people went for it and I got it! I went in for my first day only to be told that it's TEMPORARY, 3-4 weeks until they change up and get a casual in and because I'd be earning over the permitted work, my benefit would stop.
It was 7.20 an hour for 4 hours of an afternoon, just sitting, reading as the museum was so quiet and maybe answering the phone twice in that time. Wages are higher in the south so finding something that meets the permitted work requirements of 16 hours a week (if you work dead on 16 hours, that's too much) and at minimum wage to meet the 97.50 a week limit is nigh on impossible. Lower wage work consists of wholly manual work which is impossible with this condition
(I'm so angry as I could've managed the job itself. So, I quit at 3 days so as to not exceed the "permitted work" limit but I still fear that this will have messed things up and have negative repercussions.
So help me, I'm not even depressed, but ending it all just seems exceedingly logical of late. I am not sick enough to be "disabled" but I am not well enough to be a valid member of society and I am SO SICK of the in between.
