Updates

May. 24th, 2016 08:10 pm
hollymath: (Default)
The eye hospital appointment I wasn't looking forward to this morning was actually really good. A year ago I had a low-vision assessment, which basically consisted of "gadgets, can we give you them" -- it's where I got what they call a telescope, which I call a monocular because that's what I was told it was called when I got a much more low-tech one in grade school, and because telescopes are for looking at planets, not train departure displays. The orthoptist I saw the last time I was at the eye hospital told me he'd make sure I got my 12-month follow-up low vision assessment like was planned at th my 12-months-ago low vision assessment, and I got the impression I'd be discharged from MREH then to the care of my GP and optician as my condition's stable and...well, basically, I only had anything to do with them in the first place because I had to, to get registered blind.

This time I got a trainee who only introduced herself by her first name (Gemma), and she was really great. Somehow I ended up talking about the assessment I'd had from the council last summer, my frustrations with Henshaws who seem to limit their interest in me to trying to get me on a course I don't think suits me, my struggles with the new swimming baths -- I was talking to somebody who was a trained lifeguard, so she really lit up at that and was very confident about the advice she gave there, which was kind of great. We talked for absolutely ages, it was oddly therapeutic and entirely unexpected. I did come out of it with another gadget, though I wish they made it with a slot for each kind of coin or something; pound coins are some of the easiest to find because they're twice as thick as the others.

Anyway, I went straight from the eye hospital this morning to helping Morag with her Ph.D. research, which just meant walking around on a wonderfully hot and sunny afternoon and wittering as much as I liked, so basically perfect for me. Again, oddly therapeutic even though I don't think I was very good at answering questions specifically about Manchester which is what I was technically supposed to be doing, but Morag seemed very happy by the end of it, and I had a good time.

I also failed entirely to eat anything until after this, which might have contributed to me going home (and, admittedly, after a sandwich and a yogurt) crashing out hard. I didn't get much sleep last night, I got home just after Andrew had left for his pre-Brian-Wilson-gig pub meet, the dog was being cuddly and sleepy, so we both just crashed out.

I woke up not feeling up to going to the WI meeting tonight -- which is a shame because I missed the craft group yesterday for basically the same reason -- and am now struggling a bit: I feel like I should have done more with my day, even though there was a lot of thinking involved in both of the things I was out doing today. I was so good at keeping on top of the housework when Mom and Dad were here and that has inevitably fallen by the wayside since, which I'm vaguely disappointed about...but of course not enough that I've actually tidied or vacuumed or done the dishes. I ended up talking a bit to Morag about my Kickstarter book, and now I'm feeling guilty about not doing anything on that, either.

But also it occurred to me that two weeks ago I was frantically tidying and fixing and stressing ahead of my parents' visit, and that everything has been pretty exhausting since. I just worry when I'm so lacking in motivation, when I just shut down any time that there isn't some external pressure getting me to do something.

Oh also I had a phone call on Sunday about the fat-girl focus group thing, which in the process answered the question my friends and I are pondering there about what's meant by "an outfit you feel really good in" -- like Sass and I feared, it seems to be a "what makes you feel sexy" type of thing they're after, which...I don't ever do? To me, an outfit I feel good in is trousers with lots of pockets and a t-shirt with something funny written on it. But I can work on that tomorrow -- homework's not due until then!

The lady who rang me seemed to think I'd be awesome at this...once again that thing about me that Em J so diplomatically refers to as "being direct" is a feature and not a bug like I usually worry it is. Apparently this is an unusual setup in that there will actually be senior people from the company paired up with us to hear what we have to say, and with the practiced delivery of someone who's had to reassure many fat girls, this woman said "they'll be more scared than you are." Me, not needing reassurance of course, was like "quite right! bring it on!" (only to myself though...but I probably gave that impression anyway in what I did say, which might be why she said I was going to be awesome at this). Should be a laugh, anyway.
hollymath: (Default)
So: no cricket for me yesterday: poor Sri Lanka had to follow on and the match was over by Saturday night.

After only a week's worth of symptoms I usually have for about a day, my period's showed up, with extreme prejudice.

I ordered three prescriptions last week: one of which after telling me different things about it all week I now have to get from the hospital rather than the GP, one of which I have to have my blood pressure tested before they'll give me any more so that's this afternoon. Unfortunately I know it's never just a matter of testing my (perfectly fine) blood pressure, it's a big lecture about how I'm too fat. Because that's what always happens, every year for the eight or nine years I've been taking these pills.

Tomorrow I have to wake up early just to go to the stupid eye hospital for the appointment I missed a fe weeks ago.

I am not feeling very good about anything right now.

Updates

Aug. 11th, 2015 02:11 pm
hollymath: (Default)
So, after a few weeks of totally ignoring the problem of not finding much use in the white cane training I was offered, I finally adulted sufficiently to talk to the woman for long enough that we both ended up a bit more on-the-same-page and happy to continue. That was last Wednesday, so my first Tuesday back at this was today.

And it went so much better. Outwardly nothing was that different (though I didn't get told off too much for every slight instance of doing something "wrong," that was about the only overt thing I noticed), but it was generally a much more relaxed and fun session for me and probably for her as well. And I learned some actually useful stuff, like how to look like/be less of an idiot when crossing roads and navigating stairs and other things that I can do but which I actually am interested in learning the "proper" blindie way (or ways) of doing even if I end up ignoring them! Being trusted/allowed to combine sighted and blind people's ways of doing things in the way that works best for me is still my favorite part of pursuing this stuff as an adult, because it was the thing most often missing for me as a kid.

It's still kind of frustrating that this is another hoop to jump through: I can't practice with the long cane between sessions using it because it's thought to require enough specialist training that until you reach a certain level you can't take it home, so as to discourage "bad habits." And this training is clearly tailored for people who are new to sight loss or have been really severely affected by it; today she talked about eventually going into town and practicing on Market Street like it was a huge deal -- and I don't mean to diminish the extent to which crowded chaotic areas like that are a big deal, especially for people who are used to having sight and only just coming to terms with having less/none. I imagine I'd stay in the house a lot too if my sight got worse! But since I'm so used to this...well, after relinquishing the "long cane" in favor of my trusty guide cane, I ended up walking into town, and around the city centre, before I went home today.

I'm an edge case, and I don't expect the training to be tailored to someone fairly-sighted-for-a-blind-person who has decades of coping mechanisms stored up already. But I'll manage, and the stuff I can do well seems pretty recognized now, so that's okay.

When I got home, I found that my prescription swimming goggles had arrived already in the mail, and now I'm excited to go tackle another area of human endeavor with all the useful eyesight I can bring to it!
hollymath: (Default)
Remember how Mom told Andrew the other week she was worried about me because my eyesight had gotten so much worse I was depressed about it?

This is already so full of however you say "I can tell you don't get it" in NT-ese that no further refutation is really necessary.

But, in case it were, I was just at the optician's this morning (all by myself! what used to induce panic in me and require [personal profile] mother_bones's presence so I didn't run away now seems like a piece of cake after all the eye hospital hoops I've jumped through, and it helps that I know this optician and what the tests will be like) and my prescription has hardly changed at all! I don't even need to get new glasses.

And this meant I finally could get the prescription swimming goggles I'd decided on as a "hooray, I'm getting PIP now!" celebration once my first payment arrived a week or so ago. That should help a lot with both anxiety and of course blindness when I'm swimming, and hopefully help me do it more.
hollymath: (Default)
Because "cane training" will make my dirty-minded friends think of something else and giggle?

The "rehabilitation officer" from the council rang me yesterday morning. "I'm worried about you, darlin'!" she said. I had a couple of voicemails from her the previous week that I hadn't even bothered listening to once I knew they were from her, which I know is naughty, but once I was in the pub and once I was helping move house, and I'm still in a state where doing even one thing at a time takes concerted effort.

I went for my first training session before I went to Minnesota. I'd been looking forward to this because I was sure I was missing stuff in the fake-it-til-you-make-it tactic I've been taking since I got the thing in April. But when I turned up, I felt like a bait-and-switch had been pulled on me because I was again heavily pressured into trying the "long cane" and not the "guide cane" I have been using. My general agreeableness and some curiosity about the difference between the two kinds led me to have a session with the long cane.

I found it interesting and perfectly okay at the time, but the more I thought about it once I left, the more I found myself unsettled and dismayed by it.

The long cane is intended to give a much richer "view" of the world. Its user taps or rolls it from side to side along the ground as they walk (under normal circumstances; wheelchair users can use them too and there are weight-bearing walking-stick canes for people who need to use a walking stick as well). The pendulum-like movement of the cane therefore has to co-ordinate with the person's steps: it should reach its furthest point right when you take a step with your left foot, and vice versa. This can be surprisingly difficult and tiring at first, especially as the cane is meant to be "centered" at the middle of your body, held near your belly button, and it's too easy for whatever hand you're holding it with to get tired and drop down to your side. This is bad because it means your movement of the cane no longer sweeps all of the area it needs to -- which is the width of your body plus a little more each side so you know if you're right near curbs, walls, people, cars, or other obstacles.

When she'd first assessed me and talked about the canes, the lady was pushing "long cane" at me pretty heavily. If it was a real business, she'd have been upselling. So I wasn't too surprised when I got there and she's like, "Well, you don't need any guide cane training because -- you got here, didn't you?" I boggled at that: I've gotten all kinds of places, even from one continent to another, without any cane at all for my whole life until the past three months, but that doesn't mean I'm doing so in the best possible way! This "logic" was one of the few things I was annoyed about at the time, instead of just in retrospect.

Another thing, which will become relevant in a minute: the canes have different tips, too. Cane users (and this goes for guide as well as long cane) can tap or roll their canes side to side along in front of them. My guide cane happens to have a "pencil" tip, the kind for tapping (I don't know why it's called that; it's not pointy -- indeed I was instructed not to drag it on the ground because that would make the tip pointy and thus both ineffective and potentially dangerous), it's just a smooth plastic cylinder the same width as the rest of the cane, with a rounded end. The other kind of tip is called a "roller" tip, which is also white plastic but bigger and rounder -- maybe roughly the size of a tennis ball, though not quite that spherical -- and as the name implies is for rolling across the ground instead of just tapping to the extreme right and left points of the pendulum swing, lifted slightly off the ground all the rest of the time.

So I went slowly up and down a corridor until I could do this in practice as well as understand it in theory; for maybe twenty minutes or so. Then we went outside. Outside was more tricky immediately because the terrain was more uneven so --

So because I'm used to a pencil-tipped cane, and because I use my guide cane differently from a long cane -- I generally hold it still in front of me, tip near but not on the ground near the middle of where I'm walking -- this meant the roller tip took at least as much getting used to as the techniques for the long cane itself. I tried the pencil tip first in my long cane training session but preferred the roller tip, for the more complex information it gave me about what I was encountering and because it seemed more work than paying attention to how my wrist had to move to get a useful but not too violent tap or to pick it up off the ground in between sufficiently that it doesn't roll across the floor but also not too high that it's awkward or unnecessarily difficult for me to lift. Because your steps match the movements of the cane, how fast you can walk is dependent on how fast you can whip the thing back and forth in front of you without getting it tangled up in your feet and kicking it or tripping yourself or doing something else alarming; walking at what felt like a normal pace (though nothing feels normal when you're overthinking it like this) gave me enough to think about, so I was happier with the roller tip that could just rest on the ground.

The downsides of the roller tip became more evident as soon as we got outside. Sometimes the tip would get hung up on some bit of the unevenness, and then either it'd stay stuck and I'd impale my belly on it which would usually eventually cause the tip to spring up out of whatever crack or divot it'd gotten stuck in, or else the tip would jump up with the effort I was putting into shoving it across the ground in front of me. Both of these would immediately get me told off "Don't lift it!" by my ever so helpful instructor. Who was walking behind me, so I couldn't flag up how these problems seemed to me, or ask questions, or anything, without stopping and turning around, which usually got me told off for stopping when I should just keep going, or something.

I don't take criticism fantastically well at the best of times, but I thought that continuing to chastise me every time she thought the tip of the cane left contact with the ground was a bit much after a while. It's hard learning a new thing, being bad at it (especially out in public). There is a point in learning a new skill where you're intellectually aware of what you should be doing but you haven't yet had enough practice to do it reliably all the time, and at that point it stops becoming useful to point out the mistake every time it happens. I found it unspeakably frustrating, especially because I was struggling with the nuance of "using enough force to keep the cane moving at the rate you're supposed to be walking" and "not using so much force that the tip flies up in the air."

Especially because she didn't seem to like me walking slowly. "You walk fast, you're naturally a fast walker," she kept saying, which I don't even think I believe and I was irritated that she was basing this on having seen me once walk toward her office when I was worried about getting there before it closed so of course I was walking fast then! But during this lesson it was just something else to be irritated about, because it surely made sense to practice all this new stuff at a slower speed (though, obviously, moving the cane too slowly would also leave it prone to sticking in all the dips and holes in the pavement...).

I don't know how much this not-getting-a-say-in-the-narratives-about-me was echoing that pattern from my childhood, and how much was me thinking it was like that and falling back into my childhood habits of not arguing when people tell me wrong or just odd stuff about myself because arguing never worked then. I don't want to return to that kind of fatalism but also I think these kind of jobs foster habits of not always listening to their clients, particularly if what we're saying can be parsed as "I can't do that" or "I want to do an easier version of that," and that once what I say has been put into a category like that I'm pretty much doomed for evermore.

What I was supposed to do seemed kind of inconsistent, too. Praised for "avoiding the obstacle" of other people standing in the corridor, I was then accused of "veering" and staying too close to buildings when we were outside. My arm did brush up against a fence that was cordoning off some construction work at one point (all of Manchester seems to be under construction at the moment!), but that was because the space left for pedestrians to walk was really only wide enough for people to go comfortably in one direction at a time but since it's a busy area there were always people fighting past each other in both directions. Asked if I usually stick close to buildings, I honestly didn't think so, but in busy areas like this (on and near Oxford Road by the precinct centre and the aquatics centre and that), most pedestrians tend toward one side of the pavement or another as people walk the opposite way past them. It wasn't as if I was crashing into buildings or anything, just vaguely tending to that side of the pavement, which I guess is a habit I've probably developed so that I'm not going to step off a curb if I encounter someone walking the other way past me? I don't know; I've never examined my reasons for doing this. I'm not even sure how much of a pattern it is. Some of it comes from the fact that [personal profile] magister prefers to walk on the traffic side of any pavement so he can hear conversation better; I've noticed my habit of arranging myself accordingly does tend to bleed over to other people I'm walking next to these days and I really don't think that is a big deal.

But in the eyes of my "mobility instructor," this ticks a box called Veering. So I was told to walk right down the middle of the pavement, to expect other people to get out of my way. My experience had already taught me that while most people do indeed leap out of the way, yank their less-observant companions out of my way (to the point where I sometimes find myself missing the odd exchange of hellos or smiles I used to get with strangers in the street!), some people are so very not going to get out of my way. I get the theory that I'm as deserving of my space in the world as anyone else is (and that walking right down the middle is probably best-practice for people less sighted than me), but I'm really uncomfortable with feeling that I'm making an unnecessary nuisance of myself above and beyond that.

I was also told not to apologize, which again I can see the theoretical point of in being assertive and confident that I am worth the space I take up...but in practice I both come from and live in cultures where people apologize for everything, including other people bumping into them...it'd be a very hard habit for me to break, even trying to break it would skyrocket my anxiety, and my apologies don't mean that I feel I'm any less entitled to my bit of space. So yeah: not apologizing just ain't gonna happen. And that doesn't bother me.

Of course the most annoying thing about all of this is that I've seen a lot of people use these "long" canes, since childhood. Yes never for very long and yes only in certain types of situations, but. I've almost always seen them being used pretty similarly to how I use mine: drifting along in front of the feet in spaces we expect to be relatively free of obstacles (like walking down the aisle of a bus, or along a train platform). I am not saying the synchronized tapping and whatnot doesn't have its uses, but my impression is that it's like driving lessons/tests, versus how you drive after that. You have to do everything ultra-correctly for a while, with just the right amount of rolling and to just the right distance either side of your body with the cane at just the right length from your belly...and then once you pass the "test" and get to keep the cane (unlike the guide cane, I couldn't take that one away with me; this is a matter of policy to keep people from learning "bad habits" apparently), you can do what actually works for you.

It is the nature of my anxiety to second-guess pretty much every decision I make, especially for myself, so I could devil's-advocate myself into the whole "you shouldn't give up on things just because they're not fun or you're not good at them or they're not being taught in the way you'd find most perfect..." line of thinking, but I really don't think I am giving up too easily on this. I really think that the benefits of the long cane for me are nebulous and not worth the stress.

She told me at the end of the session, which was just before I was about to be away for the next two Tuesdays, that I should think about whether I wanted to continue the long cane training and let her know when I got back if I did, and not to worry about getting in touch right now if I didn't. So I had my horrible holiday and by the time I came back I was sure I didn't want to bother with this, not right now at least. And life got busy and I didn't worry about not being in touch since that's what she'd told me would indicate to her that I wasn't interested. But then I had a couple of voicemails from her last week, which I basically ignored -- one was when I was helping friends move house and was tired and covered in sweat, the other was when I was in a pub and actually having a nice time -- but then she me yesterday. This time I actually answered the phone (not having maliciously avoided it before, just not having noticed it when she called) and she told me she was worried about me because I hadn't gotten back to her. Then she asked me if I still wanted the long cane training and I was all ready to say no when she added "...or do you want the guide cane training?" I was so surprised at that I said the guide cane would be good. I hadn't expected this to be an option; I guess she's forgotten about telling me I didn't need any.

But then today I woke up late and didn't want to rush to turn up late (she'd probably think I was an Olympic sprinter if I turned up in a hurry agaiun...) and the weather was awful and I know I should have called her but I am in fact a rubbish human being so just couldn't. And now I have another voicemail from her that I'm ignoring. Nnrgh.
hollymath: (Default)
In Minnesota we may laugh at the idea of "blind cards," but now in the UK I have one!

It arrived today as part of my "introductory pack" from the council's sensory team (who, yes, I know well but clearly their receiving a copy of my Certificate of Visual Impairment triggered an automatic response, because otherwise I don't think they would have sent me badly-photocopied leaflets for old people or for macular degeneration). So I've spent the day applying for a Disabled Person's Railcard (on its way now!) and a National Concessionary Travel Pass, which annoyingly I haven't quite finished yet because I need to get someone from the sensory team to sign and notarize it.

Also this morning I got a letter through with my PIP assessment appointment time, which like everything else going on this summer is during the time my parents are making me go on vacation with them, so I had to call them but that was okay actually as not only am I getting it out of the way before I go to Minnesota -- it's now this Friday! -- but I don't have to go to somewhere I've never been in Bolton now, as the nice lady on the phone was able to get the venue changed to North Manchester hospital. Which will be a trip down memory lane! Before Andrew and I were married we lived a few doors down from it briefly, and I used to be sent there on occasion when I worked at MRI. So at least I know how to get there.

So yeah. Nothing non-urgent on today's to-do list got done today, but lots of other stuff did thanks to these two envelopes in the mail this morning.

After I get through my Atos assessment and the bus pass is sorted out, I think then, except for chasing up the light in the kitchen that should have been replaced by now, I might actually be done with the disability admin I can do right now. For so long it's seemed endless, interminable, fruitless, but I knew one day it'd all start happening in an avalanche of busy-ness, and that seems to be what's going on now.

Confidence

Jun. 13th, 2015 11:29 pm
hollymath: (Default)
The help I'm getting from the sensory team, while helpful, is a bit nerve-grating on occasion, too.

Like the way the Rehabilitation Officer I've been dealing with (and I really hate that title, too, but that's another rant), the one who gave me the white cane and the talking gadgets and is getting light fittings replaced in the house and stuff...she's also the one who does the guide-cane training I'll eventually get, and she keeps telling me about all the benefits thereof.

Not that I need convincing, I'm more than happy to do it. But she's said (as have other such people I've dealt with) that I don't offer as much resistance as they're used to getting, which I imagine is a combination of me not having the traditional British reticence, me not actually being new to sight loss, and frankly I think because I'm of a younger generation than most of the people the council will be dealing with.

Anyway, so I think I get the same spiel she gives everybody she deals with, and thus I've heard about all the good things I will get from being "rehabilitated" with white-cane training. She talks a lot about "building your confidence," enough that my reaction to this, which started out as a mild grimace (these conversations are mostly on the phone, so that's okay), has evolved into full-grown teeth-gritting and eye-rolling.

I do understand how the actual loss of someone's sight would zero out someone's confidence. That's as true for me as anyone else -- if I lost any sight I'd probably stop leaving the house or cooking or anything. As someone who's only ever gained sight, having gone from completely blind to, well, this when I was still too young to remember it happening, I have had to build whatever confidence I have at this level of sightedness. And I think I've done pretty well, actually. I was an independent baby -- apparently one of my first favorite phrases when I learned to talk was "I do it!" and I broke my arm as a toddler climbing out of my crib because I was so unwilling to have a nap just then. I was a talkative child and a teenager who hated my peer group because I thought I was better than them. I've never been lacking confidence.

And it isn't confidence I need to navigate the world. I find this cringeworthy because it makes it sound like it's my fault if I'm not always putting myself out there. I don't need to be taught that I deserve to "own my space" when I'm out and about. I know that perfectly well. What concerns me, adds to my stress, is that other people don't think so. I am faced almost every time I go out with someone nearly running into me because they were looking at their phones or they just charge out of shops without a glance to who else might be on that bit of the sidewalk. People try to sneak into queues in front of me because they think the stick means I can't see them at all (and I swear the metaphorical usage of "blind" to mean "doesn't know" or "doesn't care" -- such as "blind with rage" or "blind to the consequences of her actions" -- contribute to this attitude towards blind people...but that too is another rant). I tend to fold away the stick before I do stuff like get cash out of machines because I worry about seeming too vulnerable.

My confidence cannot exist in a vacuum. It is not solely my fault if I don't have enough. It's not our conditions that disable us disabled people; it's people's hostile reactions to us and the lack of accessibility as a general rule.

I'm not saying that my confidence or my approach to stuff doesn't affect my experiences and choices -- of course these things do, and they are important. I think this is just an example of where being new to the system, and thus treated like someone new to sight loss, means I don't quite fit and therefore maybe these things stick out more to me. Of course I do understand why things are this way: the services for people with sensory impairments stand a better chance of changing the impaired individual than they do the whole world, so it makes sense to focus on what they can help. It just irks me after a while to hear that all I need is "building up your confidence." Especially because that implies that I don't currently have much, which I don't think is true!
hollymath: (Default)
My "Support Plan" from the sensory team arrived in the mail today.

My surname is STILL spelled wrong, even after I've tried about three times to get it changed (and I have gotten my e-mail address finally fixed, which contains the correct spelling of my name...). My date of birth is wrong, interestingly; that was new to me.

And it just went downhill from there, really. Stuff I can do it says I never do. Stuff I can't do it says I have no difficulty with. Pages and pages of reading about myself in the third person and not recognizing who they're talking about. Which happened to me all the time in school, and which led me to just throw the bundle of papers down on the table.

Yes, it's nice that now that I'm not in school I can fix this. I'm still getting used to being listened to and taken seriously for anything to do with my eyes, because that just never happened in my endless specialist appointments at the Mayo Clinic and my IEP meetings at school with my parents and teachers and the visual-impairment caseworkers. So yes, it's good to know I can fix this and hopefully things will get straightened out. But just thinking of how much work it'll be to do this -- seriously, I started off just adding corrections but I think I might have to re-write this whole document -- makes me tired and sad.

It'll be a struggle not to just curl up and ignore this, and probably everything, the rest of today.

Oh well. I was about to make cheese on toast when the post arrived, because I haven't eaten anything yet today. I suppose I'll go make myself that, even though cooking is on the list of things I can't do for myself.
hollymath: (Default)
Having basically given up on the job-hunting treadmill I was on, because I discovered I was playing a game I didn't want to win (more on this later), I've turned my attention to Sorting My Life Out.

First, the whole "blind" thing.

While this was partly spurred by the RNIB website having job-related stuff that looked better suited for me than it actually turned out to be, I also asked them what I actually have to do to get registered blind (which is just an eye hospital appointment, urgh, but lovely [livejournal.com profile] greyeyedeve,, and about help with stuff like getting a white cane --

Did I talk about this here? I can't remember if I did or not. After a lot of "but I'm not blind enough" and worrying whether my eyes were getting substantially worse, which would be bad, or whether I was getting significantly more aware of problems that had always been there and might be helped by stuff that I'd, all my life, been led to believe was only for other people. Whenever I cautiously mention to anyone that I'm thinking about the possibility of letting the idea of getting a white cane cross my mind, they seem as enthusiastic about the idea as I am wary, which has helped reassure me that I'm not, I dunno, appropriating the tools of "real" blind people or trivializing them even though I'm sure I'll feel like a phony for a long time if I do end up with one.

I know these are dumb ideas. I have a lot of dumb ideas lately. If only knowing them to be so was enough to banish them.

So for that I filled in a web form on the council's website, but I've heard nothing back. It's been a month now, and I really need to call them and nag them about it, but it's one of those things I never quite get around to doing.

I did finally talk to someone from Action for Blind People this week (after weeks of them being so flaky and bad at communicating that I actually found it quite comforting to be dealing with people on my level), who were suggested by the less-helpful-than-the-website-suggested employment scheme the RNIB directed me to, and while AfBP didn't seem any more helpful to my situation (like so many things for people with sight loss, they're geared up for people who've only recently lost their sight or are just aging out of school systems and children's social services so joining a new bureaucracy. I'm not really in either group and have very good sight by the standards of these things so much of what they offer isn't useful to me.

Anyway, one of the things AfBP might be able to help me with is chasing down some kind of help from the local authority, though I know from people who've used it not to expect too much from adult social services. Of course there's nothing to stop me buying a white cane myself but I could really do with some information and encouragement that, y'know, my taxes are supposed to be helping to provide, and I'm not in a rush. Though I do find myself increasingly noticing how many situations I find myself in that would be easier if people knew I can't see very well because I think they just think I'm being awkward, or they don't know why they startled me because they have no way of knowing how atrocious my peripheral vision is, or whatever.

The AfBP lady was also very nice on the subject of me being scared of eye appointments and said she deals with lots of people who feel like I do, so I feel a bit less mental and weird on that subject as well, which helps. It's one of those things that I find perfectly understandable in other people but totally unacceptable in me. Yes! I know this is another of those dumb ideas. I think it's because I know so many more people who think optician's appointments are no big deal than I know people like me; I'm comparing myself to the wrong things. (Also I just have to remind myself that a lot of my scary memories are about things that simply will not happen again because I'm an adult now and people will listen to me and the fact that I might not want something to happen to me matters -- of course sometimes things I don't like will still happen, no doubt, but I won't be ignored and my anxieties won't be dismissed like they always were on my innumerable visits to eye specialists as a child, I won't be there for the convenience of doctors who find me an interesting case study because I will be limiting myself to tests that actually might benefit me.)

So yeah. After weeks of phone calls and e-mails to never-quite-the-right-people, waiting for people to get back to me, or getting long slow processes in motion, and now depressing these things all are, because it's like trying to move a huge boulder all by myself, it just feels like nothing's ever going to budge. I still haven't shoved the boulder very far, but I'm starting to notice it moving a little bit, enough for me to keep at it. I go to the eye hospital a week from tomorrow, and when I've got that out of the way I can do a bunch of other stuff that requires the piece of paper saying I'm blind. There's been a bit of progress on the whole "what kind of job can I get?" front too, but that will have to wait for another time.
hollymath: (Default)
Man, it's exhausting being this anxious for so long. Yesterday and this morning I spent all my time trying not to burst into tears, throw up, or start punching things. I contemplated for a while just how minute the imbalance of neurochemistry's bound to be that was causing this inexplicable misery. Add a few drops of something-or-other, or take a few away, and I'd be bouncy and in love with the world.

It comes to something when I actually feel better on a morning where I've been to the optician's -- something so, well I guess I have to use the word triggery, for me that I avoided it for years and relevant imagery featured in the worst nightmare I've had recently (of which there have been many, thanks to the above-mentioned brain chemistry).

It was tolerable because ordinary opticians are never as bad as what freaked me out (though their instruments are the same...), the one I see is wonderfully laid-back, and most of all because lovely [livejournal.com profile] greyeyedeve went with me. She's a great companion for these sorts of things, understanding the trauma, but lively and chatty and making what would otherwise be a chore into actual fun.

I took her along last time as well, and she picked the frames I ended up with now, which I don't think are ones I'd have chosen but then [livejournal.com profile] greyeyedeve not only has an excellent sense of style but because she could actually see while she was looking at them, unlike me. Foolishly, I am sad that I needed new glasses today not because of the cost or the indication that my eyes deteriorate, but just because I like the frames I have now so much that I will miss them. But I trust I'll like the new ones just as I slowly became so fond of these.

We went out for lunch, trying out the new Inspire cafe, and by the time we'd finished I think we were both ready for a nap, her because she wants to go out tonight and me because it's so exhausting being anxious all the time. So now, with nothing else I have to do today, I'm curled up listening to "The Spectre of Lanyon Moor," one of my very favorite Doctor Who stories because it's the only one to have my two favorite companions.
hollymath: (Default)
Just when I think the whole ESA thing can't get any more disheartening, rage-inducing or hurtful, it does.

This is where they get people to give up on it. I have been adamant I would persevere, I wouldn't let them get away with ignoring me, lying to me, lying about me, and treating me unfairly. But today I've had so much to do with their skewed version of reality that I just feel crushed under the weight of all the cognitive dissonance. I tell them my secrets and they tick a box. The wrong box.

They say I'm well and they're wrong. I want nothing more than for them to be right, but they're wrong. I'd rather anything than have to disagree with them, but I have to. What they write on their papers has my name on it but it's not about me. How I wish it was. I would rather be that person on the paper than the one whose hands shake while she holds it and whose tears fall on it. But I'm not her, and I hate their lies all the more for having the power to record that I am; their reality is privileged above my own, not because they know me but because they don't.

When I thought I am as fed-up with my life as I've ever been, as pessimistic, as despairing...when I thought I had built myself a shell against the DWP and all its works and all its empty promises...of course I am due a knockdown. I deserve to be reminded that that is nothing but wishful thinking and things can still hurt even when I thought I was numb, and darken my world when I thought it was black.

The DWP have just started another consultation on the Word Capability Assessment. Lets fucking tell them.

(Oh yeah, and this is why I deleted my Twitter account, for anyone who cares. I may want to delete whole chunks of my life but since I can't, at least I can get rid of fucking Twitter.)
hollymath: (Default)
I finally got through to the useless phone number on the letter I got the other day saying I'm not entitled to any more disability benefits.

If you are awarded this benefit you are put into one of two groups: "work-related activity" or "support." Support is for really ill/disabled people who aren't expected to go back to work any time soon and work-related has the intention of getting you back to work.

There are two kinds of this benefit, one based on income -- which you can't get if you have a partner who works more than 24 hours a week, as the government expects that to be enough for two people to live on, which (if my math is right) could be as little as £145.92 a week, and that's not a lot. So I was getting the other kind.

And people getting that kind, who are also in the work-related activity group -- i.e. not really that ill, in the government's eyes -- are the ones affected by the recently-notorious and much-maligned Welfare Reform Bill (which of course now is the Welfare Reform Act, but the #wrb hashtag is still being used on Twitter, which helped promote and organise some of the backlash against some of these proposed "reforms"). The change means people in circumstances like mine can now only get this kind of benefit for a year.

What happens to us after that? The letter didn't say, so this is what I was calling up to ask. The man on the phone said basically if I can rule out getting the income-based version (which I can, because my husband has a job), then "hopefully" the appeal I already have in progress will find that I should be in the support group rather than the work-related one.

That's what the guy said. Hopefully, I'd get even more ill.

He clearly didn't personally wish me to get more ill. He didn't even seem to be thinking much about the implications of what he was saying. But I couldn't think of much else for a little while after that.

The best I can hope for, in this context, is to get more ill.

Fuck this system.

fml.

Apr. 12th, 2012 12:44 pm
hollymath: (Default)
What bothers me most about the letter I got from the DWP today isn't that I have only two more weeks of getting my own income.

It isn't how long and hard I have had to fight to get it. (Which is saying something. Because that bothers me a lot.)

It isn't that I was ignored, neglected, fobbed off and lied to about my own physical and mental disabilities, having them as erased as thoroughly as anything could be.

It isn't how much more ill the process has made me, it isn't the dignity it's taken from me.

It's how fucking arbitrary this is. After a year, you're done. There's no appeal, not even the thinnest pretense of hope that I've learned to glean from these letters (which is mostly based in thinking "You're wrong!" and still being stupid enough to believe that my being right is worth something).

It doesn't matter how ill I am or how hard I worked to convince anybody that I am. It doesn't matter that this affects other people's health too -- starting with my dear husband, who's stressed to the point of illness by his job and has had to keep working because if he doesn't he's convinced we won't have any money, and can anyone blame him for being cynical and pessimistic about the benefits system after seeing what I've gone through?

I don't know what to do. I'm trying to help him get a new job at the moment, and how hollow must my encouragement sound?

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