Nice People Thread No. 15, a Cyber Summer

bugslet

SingleSue wrote: »

I'd give anything to be back like I used to be.

I have a neighbour who thinks I am milking it, or that there is nothing wrong with me, I can't tell you how much that upsets me.

A friend of mine lost most of a leg many years ago and is obstinately independent, but in truth struggles a lot as apparently as you age, the stump deteriorates and causes further problems. Her biggest gripe is reserved for those who aren't disabled but claim to be - it ends up tarring everyone with the same brush. As ever the problem with benefits, those who claim when they shouldn't.

GDB2222

SingleSue wrote: »

Unfortunately, I don't feel as if I have a golden ticket, think I would much rather be able to do the things I used to do than get the blue badge and the money.

My sister in law told me I was a jammy begger because I have a motability car, yeah so jammy I can no longer go shopping on my own, or have sex without something dislocating, or go for a nice walk on the sea front, post stuff in the post box, jump in the car and just drive, go to the loo without aids...hell get around the house without aids.

I'd give anything to be back like I used to be.

I have a neighbour who thinks I am milking it, or that there is nothing wrong with me, I can't tell you how much that upsets me.

That's the trouble with EDS. You look perfectly normal, even though it is a debilitating illness. There are people who are simply too stupid to understand, and your neighbour's one of them. It's not her fault she's stupid, but it is her fault that she opens her mouth and lets the stupidity out.

I'm quite cross now.

michaels

GDB2222 wrote: »

DW points to a recipe and says "This looks like something even you could make."

You want to be careful here, do it right and it might be the start of a slippery slope and before you know it you will be on bake-off. I think the correct approach is to say 'Of course, Dear', take it on then make a complete meal of it thus demonstrating that even with beans on toast it is probably easier for someone else to do it themselves than ask you....

SingleSue

GDB2222 wrote: »

That's the trouble with EDS. You look perfectly normal, even though it is a debilitating illness. There are people who are simply too stupid to understand, and your neighbour's one of them. It's not her fault she's stupid, but it is her fault that she opens her mouth and lets the stupidity out.

I'm quite cross now.

James is at the stage where he looks normal and the amount of times he is challenged on having a walking stick on nights out by door men or bar staff is tremendous. A lot appear to assume he is taking a stick out as some kind of fancy dress or as a weapon and when he tells them what is wrong and that he does actually need it, they laugh and tell him he is making it up as he doesn't look old enough to have a disability.

He has before now been pushed (by accident) by the crowd, had his hip or knee come out and of course has stumbled but despite having his stick has been accused of being drunk.

He won't use seats designed for mobility impaired people on public transport even if he is struggling to keep upright or things are dislocating as there are some who find it very hard to believe that a seemingly healthy 22 year old would need one. He would rather be in pain from dislocating than deal with people who are responding angrily towards him.

Unfortunately for him, he can see where his future is going just by looking at me. He is much worse than I was at his age and I feel so guilty at what I have passed on. One bright spot is that his spine doesn't appear to be as loose as mine nor was he born with a spine defect as I was, so fingers crossed he might avoid the crumbling, nerve damage and arthritis element that has caused the majority of my problems that I am currently experiencing. That said, both he and Joe have early signs of complications with some nerves as James has had the releasing hand thing for a few years and just recently, it has started happening to Joe too.

SingleSue

PasturesNew wrote: »

The thing is, a lot of people aren't any different, they've just 'learnt' how to work the system.... and it goes on a LOT.

There are those that are genuinely disabled, proper.
There are those that work out an "easy route" and plot towards it.

e.g. how hard would it be for me to present as depressed? I bet I could pull that off. Or "work" my ASD, in all honesty I'd probably qualify on some level for something for my traits/habits, but I bet a quick Google on form-filling could have me milking a gravy train simply for being "a bit odd and inconvenienced in every day life due to this hidden thing in my head that actually impacts on everything I do every day". But I choose not to be sly, crafty; I probably err on some side of not claiming what I am 'entitled' to (horrible word).

There's the man with no legs ... and the man with a stick saying he has a bad back .... between the two is a wide grey-area that can be milked for the Ticket by the sly.

I bet if I did a quick Google.... and set out filling in forms for just being weird .... I'd end up trousering a bit of a ticket. And, I'd be 'entitled' to it, because of my 'disability'. I'd just feel that was wrong.

Yeah, I'm a bit weird.... but leave the bennies for the man with no legs in my book.

I also believe if I did go down that route ... I'd end up 'believing' my own hype and become more insular/weird as I'm not forced to do as much as I can towards living a 'normal life'... not really said that right ... but I'd believe my disablement, more than trying to realise my enablement.

It's also something that "more couples" can see the benefit of because if you've one who doesn't want to work, then they can get money by registering as the 'carer' for the one who is swinging the lead. Double Bubble. That's what the couple I have encountered do.

I usually find those who have devoured the pdf guides for PIP (or DLA when it was around) usually word their or a child's difficulties using particular phrases. I see this a lot on online forums or when the boys were young, at the playgroups or parent groups.

Neither James (crossover EDS with cardiac involvement, GERD, POTS and an unconnected heart murmur) or Josh (aspergers, memory problems, bowel disorder, verbal understanding difficulties caused by damage in his brain, hearing loss and EDS) claim any DWP disability benefits. I only started claiming when I became stuck in the house and couldn't carry on independent life anymore (after having a wheelchair for 5 years).

Re trying to have a normal life, I was at pains to explain at my PIP assessment that I like to push things to try to keep some semblance of normality. So that meant I would still do some food shopping, albeit at smaller quantities than before just because I don't want to 'give in' to my body just yet. That one very small shop on a Monday beggars me for the rest of the day but I refuse to give up on it, I will carry on doing until it becomes impossible rather than difficult or very difficult.

I get what you are saying about becoming more insular, Joe has to force himself to be more 'normal' every day. It really takes it out of him and at times he fails but he is determined to live as normal as life as he possibly can.

silvercar

GDB2222 wrote: »

Hmm, or it's a mistake on the part of the loan company? They haven't recorded the bankruptcy, and this is the only address they have for him?

Second letter about the same loan arrived today. He has made 2 piddling payments to it this week and they are asking him to get in touch. Suspected the payments are to get the company off his back and that using my address is deliberate.
I got really annoyed at seeing the second letter and phoned the company up. Gave them the address that I have for him.

ivyleaf

silvercar I hope that will be the end of it!

Sue I take my hat off to all four of you :T

CKhalvashi

Can you please do me a huge favour and sign this

No personal benefit from it, just annoyed that they've chosen until now to decide on it, 2 weeks before rehearsals.

GDB2222

silvercar wrote: »

Second letter about the same loan arrived today. He has made 2 piddling payments to it this week and they are asking him to get in touch. Suspected the payments are to get the company off his back and that using my address is deliberate.
I got really annoyed at seeing the second letter and phoned the company up. Gave them the address that I have for him.

That's really interesting. Given a choice between a c0ck-up and a conspiracy, I always assume it's the former. This time, it really is a conspiracy!

GDB2222

PasturesNew wrote: »

Depends what it is. If it's toast, there are risks (of fire if you forget it's in there).

I did set fire to the toaster recently. It gave a loud pop, and the fuse blew. I dismantled the toaster and cleaned it thoroughly, replaced the fuse, and it all works again. Hooray for Dualit!