In Which The Author Discovers The Benefits Of A Functioning Welfare System

[baratron]

I am too damned middle class for my own good.

Apparently I probably could have been claiming at least the lower rate of Disability Living Allowance for the past few years. Incidents like this mean that I'm definitely entitled to it now, provided I manage to fill the form in properly. I've downloaded an enormous pack of Acrobat documents which tell you how to. Blah. It hardly seems worth going through hours of effort and grief for £16 per week, but then that would pay for the non-prescription stuff I need. (Can you believe you can't get lactase enzyme on the NHS? Avoiding dairy is all very well, but half my meds contain enough lactose to make me ill!). And if my health falls apart any more, it's better than a poke in the eye. Maaaybe.

Trying to work out what else I might be entitled to, but it's all very confusing.

Becoming quite distressed by the logistics of using a wheelchair all or part of the time. I've been working out how I'd get to work, for instance. There's a ramp up to platform 3 of Kingston station, which would deal with most of the problem, and I can actually walk, so could get myself onto the train - but how would I lift the chair up? Even the lightest wheelchairs are in the 10kg range, which is significantly more than I can lift at the moment. Wheelchair ramps exist, but you have to arrange help a minimum of 24 hours before travelling, and I expect people are strongly discouraged from wanting that help on a commuter service. Then going home again - platform 2 has stairs and a stairlift but the stairlift is kept locked up to prevent vandalism, so it would be no use. I guess with someone to carry the chair I could walk down the stairs, but argh - that's the whole problem, everything associated with trying to lead a relatively normal life involves other people. Right now I'm managing by getting other people to do everything outside the house, but it's driving me mad - for my own mental health I need to get out tomorrow. However, I am not actually certain that I could get as far as, say, Starbucks, which is the nearest place to here where I could sit down for any length of time (There are a few walls between here and there which I could perch on for a few minutes - I think I will have to become acquainted with them over the next few weeks). I need to talk to my new boss at work about my health stuff, but am not sure where to start.

Let's see if I can break the many-headed problem down into simple stages:

1. I have been dealing with crappy health stuff for a large number of years.
   
2. When something new arises, I moan about it incessantly for a few weeks/months, then intermittently for a few more weeks/months, then just get on with it, learning a way to adapt.
   
3. However, I've been adapting for so long that I've forgotten what's normal - what is normal for most people.
   
4. Moreover, I've been adapting for so long that I've also forgotten what many of my adaptions are - they've become "just the way I do it" rather than "the way I do it to prevent problem X".
   
5. So when a new health problem turns up that affects one of my adaptions, I don't know what to do: because the only thing I remember is what's normal for me. And suddenly that normal has moved.
   
6. I have in my head definitions of a "good" day and a "bad" day, and with this whatever-it-is flaring up, suddenly my best days are what I'd previously have considered bad days. Trying to remap mental territory is never much fun.

Don't think I'm moaning in livejournal instead of getting useful advice - I fully intend to speak to people who know what they're talking about, as a matter of urgency. But it's 5am, and no one will be in their offices, and I need to vent and collect my thoughts.

And I managed to burn myself on a baking tray again :(

Comments

[lizw.livejournal.com]

5. and 6. sound like they might be helped by the same sort of counselling my doctor's referring me for, which seems to basically amount to "here's a coach to help you remap your mind". Perhaps there are even people who specialise in providing that kind of help specifically for disabled people? It must be a fairly common problem, surely?

Don't forget DPTC

[(Anonymous)]

Just a couple of things which you may already have thought of.

If you are working and receiving DLA, then you can also claim the Disabled Persons Tax Credit, which is intended to pay for any extra costs resulting from your disability, and compensate you for loss of earnings. Inland Revenue administer it.

The Disability Discrimination Act has useful implications for you - stand your ground re: transport. My train from Oxford has a regular passenger who uses a wheelchair (but gets on/off train without) - every morning a member of staff is waiting at the train door to help her get in a wheelchair, and to wheel her from the platform. Kingston station should be prepared to make the same arrangements for you, if that is what you need. If they suggest you shouldn't get the train that is convenient for you, they are inviting a court case.

Check www.disability.gov.uk for more information, but I quote "Treating a disabled person less favourably because they are disabled has been unlawful since December 1996."

I suggest you also have a word with Citizen's Advice (if not already in touch), because they will be aware of advocacy groups, useful contacts etc in your area.

Hope this is helpful.

[nitoda]

Do fill in those forms - and do get advice on how to do it, too. When you are asked what you can and can't do, for instance, don't make the mistake of thinking that if you can sometimes do it you should say you can do it ... always fill it in based on what you can do on your worst days! It is a thoroughly depressing exercise, I know, cos I've had to go through it with my kids and with someone else recently. When you have filled in all the forms, be prepared for your claim to be turned down initially. I know this is crap, but it seems to be routine for first claims to be turned down. There is then an appeal system which you have to use - apparently 70% of appeals are upheld, which just proves the system is WRONG! My cynical self thinks it is their way of reducing the annual spend on benefits - they know that many people will cave in when faced with further effort before being "rewarded" with the extra cash that might give them some hope of a more normal life.

I could get very very angry ... but I won't, cos right now I don't have the energy.

DO get a claim in, though - if you want any advice by email or phone, get in touch.

HUGS!

[barakta]

Having just spent 3 hours at the local CAB helping someone fill in their DLA I agree 100%!!!

This is indeed an AOL style "me too" but it is so worth it. Get a medical bod to help with the DLA at a C.A.B or something....

Now I sleep.

Nocturnal me

Natalya

[redbird]

It doesn't sound like much, but it's about £800/year extra.

[griffen.livejournal.com]

I've been doing the disability dance for five years now.

I'll just say this. What they said (points upwards at comments above him). It is not a crime to be disabled, nor to need help. I know that's hard to believe (it was for me, anyway) but give it time. You've just now discovered that you're disabled..... deep breaths and small steps.

*offers hugs*

[baratron.livejournal.com]

Oh, the being disabled part isn't a new thing. I've been treated as disabled one way or another for the past 9 years, and self-identifying that way for at least the past 4 or 5, since I met a rather vocal disability activist. The part I'm not used to is being too disabled to do stuff and actually caring about it - when I was virtually housebound before, it was by depression, and I could have gone out if I'd really wanted to (and had someone with me to help with anxiety/agoraphobia). Now, I'm depressed only because I can't do stuff - I want to just be able to go to the goddamn bank and pay my goddamn credit card bill, or go to the bakery on the other side of Kingston that does the iced buns I like, without having to take an hour to walk what should be a 20 minute round trip, and a day in bed afterwards to recover! I'm just sick of being tired and in pain.

[johnckirk.livejournal.com]

Not to sound the voice of doom here, but are you sure that using a wheelchair would actually help? My understanding is that people who use them a lot tend to have very weak legs, and very strong arms (unless you have a battery powered one). So, is your fatigue specifically leg-related, or would you wind up being just as tired if you're wheeling yourself around with your arms?

[baratron.livejournal.com]

The Voice of Doom! I'm amused by that.

Um, anyway. There are 2 problems I have with walking.
1) Pain
2) Fatigue
Plus things like clumsiness and dizziness. I can't work out whether this is related to the pain or the fatigue, both or neither, as it all goes together in an overwhelming mess of bleurghdom. (I like that word - I'll try to remember it!)

Most of the pain I get is in my legs or back - this has always been the case. In addition, I get a lot more pain in my arm and back when I am bad enough to be really leaning on my stick, rather than just using it as a bit of extra support. In this sense, using a wheelchair would help. There are two benefits - one is that in a chair, or with a chair, I could stop and rest whenever I got tired without needing to find a place to sit down. The second is that someone else could do the pushing. It is not actually very difficult for a healthy person to push a properly-maintained manual wheelchair which has handles, unless you're going off roads.

Well. I dunno - I'm not sure I could really handle pitying comments from people who don't know me very well, like staff in restaurants and so on. Also, there are a whole load of assumptions that people make about wheelchair users, such as their brains don't work, or practical things like assuming all people who use wheelchairs are not able to walk at all. But anything's got to be better than being stuck in the house, right?

just wondering

[thekumquat.livejournal.com]

whether a walker might work? A woman at work used one - it was like the walking frame you see in old peoples' homes, but lighter weight, folded, and had wheels on the bottom, so she could lean on it when walking. I can't remember whether there was a folding seat attached. If you phone a medical supplies shop they might be able to suggest something useful.

Also I've found recently I'm entitled to a free network rail card for a friend (the cards that give you 1/3 off network southeast fares) - would that be at all useful for you? I can't think of anyone else who uses BR but doesn't need to have a tube pass. Let me know.

Oh yes - the CAB are good at filling in DLA forms so they actually get approved - I think someone said to make sure you tell them what you can't do easily on your worst days, and to read every question as "can you do this repeatedly in one day"

Good luck with it all!