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To feel this way (Disability related)

(26 Posts)
ElvishArchdruid Sun 26-Feb-17 16:20:44

I was reading a post about a friend (used in the loosest terms) wanting to report her friend due to benefits.

I can see why some people see the need to take their own lives when you have people judging you. My colleague said this about his wife on DLA. Other stories about people on DLA.

I've paid my taxes for a long time but would never claim just for this. I suffer all day every day never getting a day or night off. It's 24/7 all day every day. It is that bad that on occasion you do wonder if they'd be better off without you.

I know I'm not the only disabled person here, I am pretty sure I'm not the only person who hates being in this situation, because everyone has a view point.

I'm lucky my children embrace my disabilities, they argue who gets to push me in my w/c. There's so much you dream of doing as a Mum as a person but can't because you know realistically as much as you dream that's all it'll ever be because the simplest of things leave you in agony and bedridden for days on end.

Do you ever hear stories about the day to day lives of people with disabilities? Do they tell you the glamour of your kids knowing what incontinence pads you need from the shop, they've got it down to the minute when you need to take medication. They visit you in hospital with more coherent questions than most nurses because they know the ins and outs of everything in case of emergency. Seeing an ambulance rock up lost its appeal and excitement after the 4th time.

The fact that Mum/Dad get an hours sleep tops before waking, not because of the children, but searing pain running through joints and muscles. If Mum/Dad falls asleep on the sofa you try to be quiet as not to disturb them as they look like crap and you really want them to go to the hospital with something everyone is moaning about, but you have to hope Mum/Dad is right as they don't want to bother the GP/A&E for every little change in their condition.

A specific example from this week, you want Mum/Dad to sit with you whilst you play a game, but the pressure on their hips/back makes it agony to do so. They can't sit normally on the sofa, they have to kind of lie down and fidget to death to get comfy.

Eldest DC is doing biology which is quite fun as they're learning bodily functions and stuff. They say to their teacher but you're wrong this can happen. We had to go to school to talk about it as DC1 had so many questions, as his biology teacher was teaching how the human body should work, not how it shouldn't. It was delightful to hear that Mrs 'X' said I should be dead because of something wrong with me. Luckily DC1&2 know this isn't the case.

You get people telling their stories seldomly because there's so many people who think they know better, so many pick holes that don't need to be picked.

This isn't only for the parents but those who aren't parents. The newspapers would have you believe that being disabled is a dream, where you float by on a fluffy cloud, since those pain killers and anti spasmodics should have you running a marathon right? Wrong actually painkillers for some of us make the pain bearable at best.

How dare people claim benefits when Old Jim down the street was up a ladder the other day. God forbid you just a whole group on the actions of a minority, or maybe for the first time in months Old Jim finally felt he could get up that ladder, but paid for it for days after.

I've told you I don't claim, it's this attitude that puts me off, along with having to drag my backside to appointments I just don't have the energy for. If I could choose between being eligible for handouts or working my dream job and running round a park with my children it's definitely not going to be the former.

To the OP of that other thread, it sounds like the Mum could be putting on a front as she's totally embarrassed about how things really are. So unless she's showing you her £1000's nested away take it as bull shit.

PolterGoose Sun 26-Feb-17 16:33:29

Message withdrawn at poster's request.

PolterGoose Sun 26-Feb-17 16:33:43

Message withdrawn at poster's request.

ProudBadMum Sun 26-Feb-17 16:36:06

I think it deserves a thread of its own tbh. I saw the thread, read the OP up to 'laying it on thick' and left.

Penfold007 Sun 26-Feb-17 16:36:15

Are you saying you have a debilitating health condition that means your are in constant pain and mobilise with a wheelchair but you don't claim disability benefits for fear of being judged?

CosyNook Sun 26-Feb-17 16:40:35

If you are eligible for benefits then you should claim them.

gtyrfctsrght Sun 26-Feb-17 16:46:18

OP from what you're saying you really should claim. Wouldn't the money make your life easier? And open up so many other doors to help?

Your choice obviously but don't see yourself short out of pride.

And your DCs - are any of them involved with your local young carers (most areas have this) who work with DCs and schools to help combat what happened in biology class and support them with activities that may benefit them socially if there's missing out in any way.


ElvishArchdruid Sun 26-Feb-17 17:23:51

Yes DChildren get some kind of thing through the support team, so they can drop by and talk, it's actually been really good, I told school I don't agree children should be Carers, but then realised it's not necessarily how a child views it. If the parent is ill then they do need access to support, due to possible anxieties etc. So any parents where school isn't aware, please let them know.

I should claim but I think it doesn't help my family reads the Daily Mail. I worry like what if I had a good day which would be very rare. Like I spent 3/4 months not leaving the house kind of rare as the pain etc was so bad. My family would like oh you're cured! Kind of stupid thing.

I also don't go to the Drs that frequently as I feel more comfy dealing with things as they are, I don't want to be messing around with medications, when things are tolerable. So I don't know if that would go against me that I'm not at the Dr's 3 times a week.

Specialist wise we're at the stage where little can be done that is effective. So over the years they've said this is how it's going to be. Which is fair enough.

I read somewhere the more evidence you get the better, my last CT or MRI I asked for a copy of the report and got told you have to apply in writing for it.

So it looks like a lot of effort, I think I read somewhere else unless you're dying you have to do the forms yearly. Something about a support group, you can only be in it 12 months.

Fighterofthenightman Sun 26-Feb-17 17:25:58

Mumsnetters are constantly wanting to REPORT someone for something. If it isn't benefit fraud it's trying to get someone who actually has a job sacked for a minor misdemeanour.

Thattimeofyearagain Sun 26-Feb-17 17:28:01

Please claim, dla is there to help the quality of life for people with disabilities and/ or chronic health conditions.
It is a sad state of affairs that people ate put off claiming by societal pressure sad

expatinscotland Sun 26-Feb-17 17:30:21

'Mumsnetters are constantly wanting to REPORT someone for something. If it isn't benefit fraud it's trying to get someone who actually has a job sacked for a minor misdemeanour.'

Or SS. Or ring the police.

PurpleDaisies Sun 26-Feb-17 17:35:34

Are you saying you're not claiming benefits you're entitled to? I can't quite figure it.

Are your finances good enough that it won't make any difference to you? If not, you really should claim. You didn't choose to be disabled and if you're the same as most people you'd trade your health condition for a 9-5 job in a heartbeat.

ElvishArchdruid Sun 26-Feb-17 17:37:44

My pain has literally just gone, 'Don't talk about me on public forums, you will pay!' hmm Ive attacked it with painkillers and anti spasticity meds, you will not win! I was going to lie down anyway, calm down. It's like dealing with a toddler in tantrum mode.
(Sorry I have to use attempts at humour sometimes to see the lighter side of it all.)
Other disabled peoples can speak up too. As I can't be the only one who hates the whole omg she took her nightgown off, we have a cure. I'll let you know it's a very expensive nightgown I wear over actual clothes, so not sure if one cancels out the other. I would never go out wearing this, although I did go to hospital in it once, via ambulance though.

ElvishArchdruid Sun 26-Feb-17 17:47:20

I'd definitely trade this hell to be able bodied. It would make a difference, if only to get someone to help. Tried Direct Payments and 3 meetings later we were still no further forward. The woman was doing everything she could to say no. Even a MDT meeting asking if district nurses could do x & y. Which budget should it come out of? Firstly I don't know, secondly, I know people my age who get shit loads of hours as they've been in the system so long.

ALemonyPea Sun 26-Feb-17 17:48:19

DLA is not a means tested benefit, so regardless of your income you can claim it if you qualify for it. It's to help with the extra expenses that being disabled might incur.

Gore all the idiots who think that only spongers get benefits. Please apply for DLA/PIP, if you are declined, then you've not lost anything. If you et it, then make sure you use it for what you need, be that a new wheelchair, or treats for your DC who are helping you out when you need it.

ALemonyPea Sun 26-Feb-17 17:48:44

Ignore, not gore, although feel free to do the latter if you want.

gtyrfctsrght Sun 26-Feb-17 17:51:44

I'm pleased DCs are getting extra support. They don't have to be carers really just living with someone with care needs that might impact on them.

As for claiming and your family... you are under no obligation to tell them what you do and don't claim.

I hope you do try for it. Sounds like you're in need of it.

Penfold007 Sun 26-Feb-17 17:56:38

Elvish you really should claim, the extra money would go a long way to improving your quality of life. Maybe it could pay for a cleaner or whatever would make life a little better.
If you haven't I would request a family assessment from Social Services with a view to seeing what care they feel you would benefit from and what funding you can access.
I've been a child carer and and now an adult carer for a parent, it can be hard work, your DC sound amazing.

TragicRabbit Sun 26-Feb-17 17:58:28

Send off for the form.
Fill it in thinking of how you feel on your worst days.
Send it off.
Whatever happens next has nothing to do with anyone else. flowers

TinklyLittleLaugh Sun 26-Feb-17 18:02:17

If you think you might be eligable then you should claim. I know it's a really difficult thing to do, mentally and emotionally, but there is help available and the money could maybe make your life a bit easier.

ElvishArchdruid Sun 26-Feb-17 18:23:41

Thank you, I'll build up the confidence and get a letter requesting medical records and stuff. I'm kind of scared of reading my hospital records though as I know I'm not the ideal patient.

An off roading electric wheelchair would be amazing so I can do stuff that isn't accessible like muddy paths, grass, sand. I've seen beach wheelchairs I totally get why DH doesn't want to be pushing that with me in it, as they didn't go for the minimalist look.

Am I the only one that feels put off by other people's views, or do you just think bugger them?

I could do with that other OP's get rich quick scheme her 'friend' does. Not to be catty, but £200 a week with what appears to be minimal effort sounds like bliss.

TragicRabbit Sun 26-Feb-17 19:23:20

Look at it this way: if one of your dcs was in your position what would you want for them? Don't you think that you deserve the same.
If you find that hard, get out a photo of yourself when you were small, say 2 or 3, and then look really long and hard into her eyes and decide what she deserves.
Yes, I'd think bugger them.

NotaSnowflake Sun 26-Feb-17 19:28:49

Elvish you just described my life except with younger DCs.

I am constantly judged on my 'good days' but they don't see me on the other days when I cannot move at all.

I do claim because I have to but I am constantly defending my Daily Mail reading family and the funny looks I get when I'm parking with my Blue Badge. It's soul destroying. I totally get what you're saying and fully understand it

NotaSnowflake Sun 26-Feb-17 19:32:48

You could even use it to pay for a Motability car that they will adapt to your needs free of charge. It includes insurance and tax so it really takes the pressure & stress off having a car and help you to get around. Mine is my lifeline. Please claim OP. You owe it to yourself flowers

MatildaTheCat Sun 26-Feb-17 19:42:24

I hav a spinal injury and severe chronic pain. I claim PIP and almost nobody beyond my very closest friends know this. You are correct, we are judged because the government have done a fine job, via the media of ensuring that all benefit claimants are cheating spongers.

My experiences of the process have not been easy. Get help with the forms and supply as much supporting evidence as you can. GP letters, consultant letters, letters of support from friends even. Prescription lists, scan reports, the lot.

I do all the forms on a word document so you can do it slowly and make alterations and also use it again if necessary. There is lots and lots of repetition. The assessments are fairly daunting but usually bearable...always take someone to help and offer their views.

I've recently appealed following being downgraded after being reassessed and the CAB were fantastically helpful. The appeal was upheld and best of all the award is indefinite.

It's stressful but there is a lot of help available and the money can be spent on anything you want to make life easier. If awarded higher rates you can also get quite a lot of additional benefits such as a freedom pass.

Call tomorrow, if you are successful the award is backdated to the day you make that call. It's not easy and people do judge but it's up to you who you tell. Nobody places a big Red Cross on your front door.

Good luck

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