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?

Some people on this thread are determined to peddle their own ignorant agenda, and they'll keep peddling it regardless what information they are given to the contrary. It's like some sort of weird doublethink, isn't it. I'm beginning to despair of what society is turning into.😒

I'm curious as to whether these people have ever had to practise for themselves any of what they are so keen to preach for others. Given the nonsense some are coming out with (I don't just mean on this thread), I suspect not.

The fact that you "had not considered that to be an option" shows that you're capable of work and your disability doesn't prevent you from working. That isn't the case for many people on the thread.

This is one of the worst things about these benefits threads is you always get someone coming on saying "yeah well I bet I'm so much more disabled than any of you and I work 40 hours a week plus 40 hours overtime so you have no excuse" type things.

Why on earth would you need a frozen potato over a fresh potato?

You can hardly say cost is the limiting factor in OP’s diet when she’s popping the the garage for coke, having pot noodles and pizzas!

Totally agree with you, @ruethewhirl. It’s very sad to see.

Well they're certainly not the 'official 'figure of practically 0% no matter how much people on these threads like to parrot it.

But that is not the point of this thread. This is about OP’s individual circumstances. As usual though, it turns into a disability bashing, benefits bashing free for all.

What are you basing your 'belief' on? And I don't mean notions like 'well, Sharon down the road claims PIP, sits around watching Loose Women all day and there's not a thing wrong with her', I mean actual evidence that supports your 'belief'.

Absolutely. And surely that’s the point of assessing who is at a level where work truly is impossible rather than not great for yoy

Hi OP, I'm similar to you although not quite as bad as in I can manage day to day activities but I don't work. If that was added in (which it will have to be soon) I'd probably go downhill. I'm not diagnosed because my health anxiety prevents me from going through tests to rule everything else out. I'm autistic.

My current breakfast is plain mixed nuts, one hard boiled egg, some sauerkraut and a few olives. Lunch is microwave wholegrain rice and a bit of chicken or tinned salmon with hoisin sauce. Struggling with dinner at the moment though because my son has started having panic attacks and I'm so anxious I've lost my appetite. I just try to eat the same thing every day to make the online shop easier. I don't eat gluten.

And yes, it truly is awful. I don't understand the benefits bashers. Unless we have considerable savings, we could all end up in this situation and so could our children. It was bad enough before....have you seen "I, Daniel Blake"....it should be compulsory viewing I think.

No one is being awful. Many of us will deal with serious illnesses and care for people with disabilities daily who are facing the stress over reassessment due to soaring claims and no wonder when we have people here suggesting kettles are ok to handle, microwaves too difficult. Pizzas in the oven ok, chicken too hard.

It makes a mockery of the system and sadly those greatest of need are the ones suffering.

Usually Labour, I'd definitely vote Green if I thought they would get in. Being pragmatic, I'd always vote Labour to avoid the Conservatives or Reform. Reform would be much worse than Labour, Farage has been cosying up to Trump and Trump isn't exactly going swimmingly for the US, it's more like a bonfire of public services and everything else over there. The Green party are talking about a wealth tax, this would help public services.

Because other people pointed out they were available and ‘easier’ so I pointed out the cost.

But also, if you look a few pages back, you’ll see a pp has listed the steps that need to be taken in preparing what is considered a basic food and how that might affect an ill or disabled person.

Yes living the high life indeed.

Emergency can of coke: £1.60

Pot noodle: 89p

Pizza Express pizza: £2.25 (they were on offer)

Total food cost for yesterday: £4.74

I think posters who are vociferously arguing that the op can get up and do a 34mile round trip, stopping at a garage to buy and drink a coke and then going out for an hour client meeting and then staying online till 2am posting, is at the same time too exhausted to peel a banana instead of opening said coke, summarises the problem we have in the UK.

Can your ex not help, OP? You have not said.
At least with the driving.

🙌

No, we’re just saying that by doing those things once, it can and does have a knock on effect.

The criteria that PIP is (supposed to be) worked out under is whether a person can do the task repeatedly, reliably and safely.

So I actually agree with this and have been absolutely slated (by other disabled people!) on various threads for saying so. I do think it’s a bit higher than the figure the DWP currently finds and reports. But it seems like the belief that it is probably higher / refusal to accept it’s only just a bit over 0% then leads people to think that many or most people are faking or fraudulent. That isn’t true either. It is difficult to claim PIP. Some people definitely do exaggerate, lie, etc, and if you have a great deal of experience (I’m talking many many years) in disability communities then you end up encountering these people, and they also often exploit charities, the media, go fund me, etc. They aren’t necessarily caught for fraud and aren’t in that low figure. But it’s still a small group, and he process is harsh and rigorous. It genuinely is unfair to see the occasional person you might know who seems like a real chancer, and assume that = disabled people.

Also bear in mind, some symptoms are really shameful (in how you feel) and embarrassing! One big category where you can get points is incontinence. Someone who seems okay and not disabled, who you might perhaps think is faking, could be claiming in that category for something like a bowel disease. It’s generally best to assume individuals are genuine, even if you have a bit of scepticism about the fraud rates.

The majority of disabled people don't claim PIP - there are 10.21 million people of working age in the UK who have a disability. There are 3.7 million people claiming PIP.

Yes i wish I had the energy to post coherently at 2am. I'm often in bed by 9pm.

Good thing literally no one has argued that.

And I think the people that cannot understand that illnesses can be fluctuating and doing something once does not mean being able to do it all the time, or even enough to sustain themselves, summarises the problem we have in the UK.

OP you say you don’t have the energy to place an online shopping order but you somehow have energy to stay online until nearly 2am at night and be back again this morning. You have the energy to type quite lengthy responses and respond eloquently to challenges and questions from others.
Can you see how this is confusing? Placing an online order for 10 or 15 healthy food items would have taken 10% of the energy you have just put into the online forum.
Regarding the food choices you made yesterday, people defend your choices saying we can’t possibly understand what it’s like. Ok, so what’s the ideal solution? It’s a chronic condition so should we all just encourage maximum benefit payments for life while people like you eat themselves into diabetes and develop even worse health problems ?

You literally put a potato in the microwave if you want it faster, or the oven.

Some of these come backs are utterly farcical.

Yes it's all a bit contrary isn't it.