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?

Yeah but it needs to be cut, peeled, bitten into, broken off a bunch, washed, etc.

All things that are totally thoughtless for a healthy person but can be a big deal to someone with a fatigue based condition. I eat fruit but it’s given to me already cut up, peeled and prepared. If it wasn’t I wouldn’t ever eat it.

Sleep deprivation is a massive factor in people's health.
Its no wonder OP cant function in the day if she isn't getting enough sleep.

Straight away there's a problem with that suggestion.

Do you have any idea how long it takes to get money refunded to you from the government/local authorities? I'll tell you - it can take months. Months and bloody months - and that includes endless chasing. If you don't chase it, the refund inevitably gets lost. Can you tell this is the bitter voice of many years of experience here?!

Many, many disabled people simply don't have the funds to pay for therapies or treatments upfront and "provide the receipts". Many are barely scraping by. If they had to get a refund - and wait several months for it - they wouldn't be able to have it.

And as for vouchers.....so disabled people don't get to choose their provider? They can't shop around for cheapest deals. They're tied to whoever the government does a deal with..... Yes, it's dehumanising. There's no actual point in giving disabled people vouchers other than to make them feel less. Make them feel other. It's humiliating having to pay in vouchers - in shops, everyone around you knows you're skint and having to rely on handouts. And just look at the judgement on this thread......just no.

If you think people are raking it in, then I'd be OK with disability benefits being means tested, or capped at a certain income. That would be infinitely preferable than vouchers and should quell the complaints from people who think disabled families are loaded.

@PandoraSox how can your DH drive using hand controls, opening car doors and not be able to microwave food? This makes no sense.

People don’t always apply for something just because they need it. Many will apply just because they want it. I guess the incentive is there where money is concerned, however difficult it might be. The end goal for many would be worth the ‘difficulty*.

Pizza needs cutting up and wrapping taken off before cooking.

Bananas are easier than a pizza.

'who cleans the air fryer afterwards?'

Use liners. 20 for a quid in Morrisons.

'you can eat pizza with your hands. No washing up You only need one fork for the pot noodle. You are more likely to need multiple implements for jacket and beans.'
If you can wash a fork for a potnoodle you can wash a knife and fork for a jacket potato, or a spoon for soup, or again a fork for some tuna.

'I can’t grate cheese.'

Coleslaw?

as the other previous poster said, she ate simple foods and it improved

think nuts, fruits, jacket potato is as easy to put in the oven as a pizza, water

What are you talking about? Food, heating, personal care, access to exercise aren't therapeutic?!

She needs to keep her house warmer than average, she needs help with her hair cos she can't raise her arms, etc.

You're not the arbiter of what people need, fortunately.

Have some sympathy for those with it who are not in any sense living it up but just barely managing, and doing so with incredibly severe impairments in many cases. It’s not a race to the bottom and you are the one framing it as disabled people vs everyone else. In reality most disabled people are living in poverty, and someone who acquires a chronic illness through poor living conditions is in fact themselves a disabled person.

This is absolute nonsense…..

Lol, I knew there would be at least one dismissive and uncomprehending reply.

Maybe I should count them up… So, one thus far.

My mum was disabled - polio from the very last epidemic in the 1950's. She employed a hugely positive attitude and helped herself. Some people should be making much more effort to help themselves, rather than becoming subsumed by their condition and becoming passive victims of their situation. I get that if you're severely physically disabled, for whatever reason, then it's a huge challenge. But surely a full life is better than giving in to some kind of half-life.

Where I used to work we employed disabled people and their contribution was identical to everyone else of course - it gave them purpose, companionship and income. I'm sure it also reduced the burden on their family.

Regarding benefits, they're very generous and anyone in genuine need will still get them, I'm sure. But, because of how working people 's income has been hammered for years, it's now become more lucrative to be on benefits rather than working. How can this be fair or right? I don't have answers, but at least the Government are trying to tackle the situation. I know my views won't be welcome or popular on this thread, but when I voted on AIBU I see over 50% of people agree with me. Possibly they feel too intimidated to comment, which I understand.

I get that but surely you could swap

can of coke - banana
pot noodle - avocado, smoked salmon and mozarella (uncooked, just the foodstuffs on a plate)
frozen pizza - healthier ready meal for dinner.

You are literally putting no fuel in your body - everybody would feel awful if they ate like that and would probably be severely malnourished.

What is AA. I only know Alcoholics Anonymous and the Automobile Association. Thanks

A second one!

That makes two.

Notice, thread lurkers, how I was badgered to explain the difficulties of fatigue based conditions… and then the response when I did.

That’s absolutely not what I said. I think the reforms need to be scrutinised to ensure they are focused on the right people.
But none on this is the fault of high earners working hard to pay taxes. Childcare policies exist because their is widespread long term and short term financial benefits to the treasury.

No, I accept that. But it doesn’t answer the specifics of what I was querying. If someone has the ability to pour boiling water on something or put things in an oven/microwave or use their fingers to pull something (i.e. open a can of coke), surely it makes no difference to their disability what they are pouring water onto or putting in and out of the microwave or pulling open.

Okay, you have bananas for dinner tonight

Have you considered neurosym (google!) lots of evidence and I have a friend who said it is LIFE CHANGING. It’s a very new type of treatment, but don’t write it off. Said friend is like a different person, honestly. Still has some other issues but the fatigue is 100 times better.

Attendance Allowance.

Greater cheese is too expensive but not a can of coke for breakfast which is like £1.30 minimum now and an expensive pot noddle.

The process is utterly fucking miserable though. Fair play to anyone who puts themselves through it who doesn't absolutely have to! 😅

I would be interested in finding out the income levels of people who receive PIP because it's an intriguing point.

Most of us are protective of the people who are barely scraping by with disabilities and certainly in my experience, that's pretty much every disabled family I've met. Changes are going to push so many people into genuine hardship which they have no way out of. Employers aren't going to suddenly become more accommodating and accessible jobs aren't going to magically open up.

Lots of the people who are anti-disability claimants seem to have lots of stories about non-disabled people getting the benefits and having tons of cash. Capping the benefits in some way might help - although I suspect many of these people complaining won't be happy until zero is being paid to benefit claimants....

I've every sympathy for anyone struggling but you need to change your mindset. The list of what you can't do food wise is absolutely fixable.

Again, if someone can eat pizza, coke and potnoodle they can eat healthy oats, fruit and drink water or fruit juice.

then its a catch 22

because living on highly processed foods is going to make you feel shit

it was the poster up thread that said their condition improved when their diet wasn't highly processed foods and swapped to stuff like nuts that don't need to be cooked or create cleaning