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?

And like I pointed out, it is more expensive than ‘normal’ tuna. At more than double the price.

(Edited to add - I already acknowledged, in fact in the post you quoted, these were available).

You say you generally follow a high fat, low carb diet. That's not going to be helping your energy and tiredness, you need carbs for energy. I'm not saying it will "cure" you, but it will make things easier.

You do realise not everyone has family, right? And many people's families aren't in a position to do this?

It is indeed baffling the lengths a pp is going to to explain why it's coke over a tin of veg/beans sorry. Only coke. Nothing else.
I wonder if I dare mention a tuna sandwich? Tuna comes in plastic tubs nowadays?

Just wanted to add to this, I wasn't judging what the OP ate but more the lack of it.

When I went through this the GP said to eat often - didn't have to be healthy but had to be regular eating. I did find more fruits, veg, nuts made a difference and didn't require a lot of prep. On bad days I would find it easier to eat nuts, fruit, cold meats etc that lifting a kettle (sometimes the kettle felt like a 10kg Kettle Ball).

I was able to continue working full time after taking some sick leave, going part time for a bit until it was under control.

I did have to make lifestyle changes though to get better (only triggered it once in the last 10 years and that was after I had flu and it only lasted around 3 days). A bad case of flu it was started the condition for me and it stills seems to trigger it.

This!

Let’s take money away from disabled people while expecting them to pay for the more expensive options! What a great idea!

It’s like people don’t think, isn’t it?

I take it you missed the multiple posts by people explaining that cans and tins are not identical, use different metals, and it is very possible to be able to open one but not the other?

If you’ve never noticed a difference, lucky you.

Yes but that will be way too expensive 😬

Coke and baked beans cans are different metals. Coke cans are plastic based and lighter. It also depends on whether the person has to use a can opener, or whether there is a ring pull.

Families are already doing this, as has been said countless times.

If my DH lost his PIP and I lost carer's allowance we would have to live on my occupational pension only. Not possible.

So, I would go back to work until State Pension age. Who would get my DH up in the morning, dress him, feed him? Be there when he falls? Get him to appointments? Or would he just be left to rot while I work.

You have no idea about the reality of disability.

It's awful living like this.
You can self refer to adult social care for a direct payments assessment. This could enable you to employ a PA to assist with household tasks, driving, cooking etc.

Since you’re referring to “a pp”, I take it you mean me. I have been commenting on Coke vs Beans because that’s the example others have been using, and I have experience with it. I’ve never tried to open tuna due to being vegetarian/vegan.

A broader issue is learned helplessness in children/ young people.
No we don't know the extent of the difficiculties faced by OP's daughter.
She is not a carer. I do feel she may be capable of preparing scrambled eggs for example.

Its disgusting the way those who need it most are under scrutiny.

I’m not saying a better diet will cure or solve any of the problems, just that it will help the OP to feel marginally less shit and exhausted, which makes everything more bearable. I have a long term health condition and have done this, and it has helped.

I don’t even think OP (who has probably long checked out of the thread) has even said she can’t open tins? It’s other posters saying she can’t possibly.

Taxi for 15 year old to get to school? I might have missed it, but is he/she/them disabled too?

No, I'm saying that this is not one competent nhs dietician who would recommend coke. You maybe should ask to be seen by someone else next time.

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.

Exactly. If she is so exhausted that she can't open a tin of beans, then she shouldn't be driving. But apparently, none of us understand fatigue-based illnesses.

Are you being wilfully obtuse? 'Historically', families were larger and geographically closer together. Many, many people nowadays can't just up sticks to provide care for a relative because their income would disappear.

Many more aren't healthy enough themselves to provide care for a relative, which is a situation I'm rapidly finding myself in, so I do know what I'm talking about here.

Good luck with everything, sounds like you have been coping amazingly well with such difficulties.

You’re quite right. Which is why, in October 2023 I phoned children’s social care at breaking point to ask for help. I was literally at the point of wanting DD taken into care, I didn’t feel safe to care for her or meet her needs. A SW came out and agreed we needed support, and put us on the waiting list. We are still on the waiting list now. There is no help out there, I have tried. So it’s not ideal but we just have to manage.

This was a senior specialist dietitian working within a specialist team. For complex conditions. Her advice successfully kept off TPN and avoided me having to get a central line.

What about that indicates a lack of competency?

(Nothing, you just can’t admit you’re wrong.)

These threads have been eye opening. Upon initially reading the news I was shocked at benefits for disabled people being cut, reading some of these posts has made me realise why. Absolutely ridiculous.