To think I am completely fucked if PIP changes happen?

[PIPsqueakybum]

I get standard rate PIP due to having CFS. I’ve had CFS for 10 years and at the moment I’m going through one of my ‘better’ phases, during the bad phases, which can last weeks or months, I am virtually bed bound, and although I manage my condition as much as possible through pacing, stress is a big factor in making it worse so one majorly stressful event and I’ll be back to square one. I am self employed and manage at the moment maybe 10 hours of work a week, which is better than no hours which is where I was for many years. This is in part due to finally winning my battle for PIP and being able to afford therapies which have helped me have at least some kind of a life.

To give you an idea of an average day (bearing in mind this is as good as my health gets), here’s what I did today:

7.30am woke up as usual feeling completely unrested, aching and like I’d been hit by a truck.

8.30am drove teenage DD to school. Already felt completely exhausted and had to stop at a garage on the way home for a rest and to buy a can of coke to try and wake myself up enough to drive home.

9.30am got home and got back into bed to rest, as I had a meeting at 1.30pm and I felt too tired to manage a conversation. Fell asleep for a couple of hours.

12.30pm got up, had a pot noodle for breakfast/lunch, as I didn’t have the energy to make anything else.

1.30pm met up with potential client, which went well and I have some work as a result of it, but was left completely wiped out by having to be ‘on’ for an hour.

2.30pm got back home, tried to do some jobs around the house but was too tired and went back to bed to rest and then slept for another hour.

6pm got up and put a pizza in the oven for tea.

7pm - now, rested in bed, aching all over and watched TV/zoned out for the evening.

This is a typical day, and I repeat this is as good as things get for me. The fact that I was able to get DD to school and go to a meeting is a HUGE improvement on where I was for years, but CFS is a fluctuating condition and I could very easily be back to being completely useless.

If the proposed PIP changes happen, I will lose my PIP, and ergo also lose the LCWRA element of UC. It was a long battle to get PIP and I don’t have any more than 2 points in any descriptor. I will then be on the basic rate of UC, and my self employment will not be seen as gainful so I will be expected to job search for 40 hours per week, and will be sanctioned and lose further money when I can’t do this. I honestly can’t do any more than I’m doing, and even what I am doing now is a struggle. I’m doomed aren’t I?

Being disabled and unable to drive is absolutely shit. I'd tell everyone who's disabled to hang onto their license as long as they possibly can.

That is horrendous.

Yes, she has SEN.

Thats a pretty unkind and inflammatory thing to say.

Better hope you never get ill or have an accident, then.

Eta: I see earlier you posted about your own mental health difficulties, which makes your comment even more incomprehensible to me.

Thanks @Bogginsthe3rd! Despite all the difficulties my mental health is far better than a few years back and I am not too unhappy. I’ve mostly made peace with being disabled though of course I wish I wasn’t. But have had to accept it. I’m very lucky to be married as that makes me life infinitely better.

I don’t agree.

Yes that was posted just prior to my post.

This thread is so weird, we'll be accused of ableism when many of us will have illnesses and genuinely disabled family that need PIP and carers, to read the nitpicking over coke cans fine, tuna cans not is just crazy.

If you can 'prepare' a pot noodle you can prepare a jacket potato. If you can heat up a pizza you can heat up a pie. It should be obvious.

And for those that seemed hyper focused on the can of coke, that was a bit of an emergency situation as I felt too tired to drive and I was half an hour away from home, so I stopped for a rest and got a can of coke for the caffeine boost to propel me home. I don’t generally sit around mainlining Coke, to be clear.

Those things aren't exactly nutritious

You could have started your own thread about it if you were so desperate to but you’ve intentionally piled on in a thread by someone who is unwell and struggling. Personally I do feel that is quite unkind, yes. And then you’re also hinting that it’s disabled people talking about being disabled that now makes you want to cheer on us being placed in even more poverty and anxiety. Seems pretty inflammatory to me.

But the LA won’t provide transport unless she has an EHCP. Which she doesn’t, yet, as I’ve already explained.

I have a serious physical health condition and mental health problems. It would definitely benefit my health not to work. But I had not really considered that to be an option. However the point of the cuts surely is that should I have an accident that actually left me completely incapacitated eg with a serious brain injury or terminal cancer then I would absolutely qualify for financial support? It is people with my level of disability that are encouraged to work because while yes it sucks to have an illness or disability, many many many people do?

Better than pot noodles and pizza.

I posted this in reply to that other one but it will do for you too.

Well, it will be. Like I pointed out - frozen jackets are £3 for 4. 79p for fresh. The ready to go tuna is £1.98 a pot compared with approx 70p a tin of ‘normal’ tuna. That’s just one meal costing approx £1.50 more just because someone is ill or disabled.

@PIPsqueakybum OP, I’m sorry people are being so awful. Consider posting in mumsnetters with special needs another time or even in general health. This thread is getting the AIBU treatment which is partly why the response is like this. It’s not that those other sections are guaranteed free of nasty comments but it shouldn’t be as bad and there’d be a majority of people with issues a bit closer to yours and more comprehension.

You’re reading the wrong posts then. Social media is not the best way to gather accurate information. Much of what is presented here is very biased opinion based on a not very good grasp of actual fact and a total misunderstanding of disability.

Please re-red my post. Because you listing steps makes very little sense, sorry. You can heat and eat ready soup from the package it comes in.

I voted Labour because I was sick of the battle every two years for my son's PIP. I also thought about everyone else that had the same battles. My son has autism and cannot work, I was worried about his future. I can't believe this is a Labour government. It seems like a bad dream.

Daughter without EHCP should be able to knock up simple meals.

Sorry you are havign a horrible time OP.

But not everyone has the same illness or disabilty. It’s almost like people are individuals!

Totally agree.

Most people with disabilities who don’t work are not “opting” to not work. That may be true in some cases (controversially I think it probably is) but it’s the minority, definitely not common or the majority. The vast majority of disabled people would love to work but the world of work is hardly disability friendly. It could be made more so for some disabilities, which would be great, but there will always be some conditions that preclude work.

Yes but 25% of the UK public are claiming disability and I do not believe we have that many disabled people in the UK.

she is in the process of being assessed for an EHCP, and yes she does have to cook simple meals (stuff that goes in the air fryer mainly), she’d be very hungry if she didn’t.