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?

Maybe the op ENJOYS spending the time driving her child to school on the days she is ABLE too, because unfortunately CFS massively limits quality time with your loved ones. So on the days you are able to, you make the most of them! It is heartbreaking when I am bed bound for days and unable to stay awake to spend time with my 13 year old.
You absolutely cannot possibly make correct and just assumptions based on the minimal info the OP has given.

Let me help people who know nothing about MEcfs.

There is no therapy.

There is no treatment.

You're unlikely to see a doctor or specialist. Some areas just don't have them. Others have waitlists of years and years. Some doctors are not up to date with nice guidelines and recommend 'treatments' that were withdrawn as they were proven to cause irreparable harm in several cases.

People with MEcfs vary in their symptoms from day to day and from person to person. Where some people may find some small benefit from something, others do not.

Have your opinion if you want that seriously sick people with energy limiting illnesses should be job hunting and taking unsuitable jobs at the risk of turning a mild condition severe and taking away any quality of life whatsoever. It would be great if you keep it to yourself though on a thread where @PIPsqueakybum has asked for some support and understanding.

Op does work and does what she can.

I hope these cuts are scrapped. I'm disgusted with labour.

You are ignorant, uninformed and need to look inside yourself. Maybe do some research on CFS before making such abhorrent statements. Would you tell someone who is paralysed to just get up and walk, and then their quality of life might improve? Would you tell someone who is deaf to just listen harder and their quality of life might improve?
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Those who lose PIP at their next assessment (under new rules) aren't just going to be left destitute.

"In a written response on Monday, Sir Stephen said: "There will be no immediate changes to Personal Independence Payment (PIP). Our intention is that the changes will apply to new claims and award reviews from November 2026, subject to parliamentary approval."
"For those already on PIP, the changes will only apply at their next award review. The average award review is about three years.
"When people are reassessed, they will be reviewed by a trained assessor or healthcare professional, and assessed on their individual needs and circumstances. The personal impact will depend on an individual's circumstances. We are consulting on how best to support those who lose entitlement, including how to make sure health and eligible care needs are met." "

Unfortunately the combination of PIP and LCWRA has become sort of a dumping ground for disabled people."Here's your benefits we've done all we can." .
The amount of people I have seen say they would work if they could in the last few weeks should be rejoicing that the government are looking into ways to getting them the support and training the need/want to get into work surely? They are also going to be working with employers to ensure disability friendly jobs. How is this a bad thing?

You are able to batch cook healthy meals. You are putting up a barrier by saying that you can’t possibly entertain having a healthy diet. Even chicken pesto pasta would be better than a pot noodle and a can of coke. Sorry but you need to fuel yourself better.
Or beans/eggs on toast.

Which of us are you referring to? At least have the courage to be specific.

Maybe she does enjoy this as many other parents would, but lots of people don't have the privilege of spending valuable time with their children each day like this because it impacts their ability to work. Perhaps not quite in the same way as OP, but because their working commitments simply don't allow it. It is a lot for OP to choose to devote a huge amount of her time and effort to driving her DD to school and then complain that she is so burnt out from doing this that she is basically incapacitated for the rest of the day, can't even muster the energy to feed herself properly or work and therefore is in desperate need of state support. It is natural people question if she can make changes to help herself. It seems the current situation isn't really working for anyone.

How do you know she can batch cook? Do you know the op? Do you know if the meds she takes make her nauseous and unable to stomach food, or that cooking food when nauseous puts her off eating it? Do you know if she is depressed and just doesn’t have it in her right now to care for herself better?

OP isn’t actually choosing to though. She has no choice.

@iwentjasonwaterfalls quite obviously it was surgery that removed my brain tumour.

It was 5 years of rehab and sticking to a strictly healthy diet and regular exercise that has meant I now feel better than ever even though I’m now in my 50’s.

Again, the mental gymnastics. Trying to make it make sense. OP never mentioned anything about being nauseous from meds or depression. You have just offered these excuses because you can't tolerate the idea that OP could do more to help herself? Why is this so abhorrent to you? Why leap in with excuses and reasons to justify her continued diet of coke and pizza?

Trained assessors are totally subjective. Most people just now win pip on appeal but the backlog is huge.

Are we really going to magic up a ton of flexible remote working jobs for people within the next twelve months?

Don't believe it for a second.

Other parents may not have the privilege of masses of quality time with their children, but we aren’t discussing other parents. Other parents can do physical activities and play games with their children, take them to the park, go to theme parks etc, a child’s quality time with a CFS parent is vastly different to what the child of a healthy parent enjoys. And yes, she may use up her energy for the day to take that child to school, but if that time together makes her and the child happy, then that’s what they choose.

Ah ok, I was only asking as from the way the post was written it looked like you'd cured your symptoms with diet and exercise. Mine is inoperable so I look for symptom relief ideas wherever I can get it 😅

My post was in response to someone trying to suggest OP was doing the school run because she might enjoy it. I know OP says she has no choice currently but it's quite an extreme situation where a single parent, with CFS lives 17 miles from their DD's school and there are no public transport options available. She even admits sometimes it isn't safe for her to drive the journey so it's a completely unsustainable situation even if you take what OP's saying at face value. Presumably she lives rurally which again raisins all sorts of questions if her CFS is as bad as she claims.

I laughed when I read that. Talk is cheap, and these people spend too much time talking. The system is in chaos, and needs a complete overhaul, in the way that assessments are carried out, and by the people doing them.

It’s not mental gymnastics, it’s the unfortunate realities of living with these conditions, look, you clearly want to pigeon hole the op into workshy benefit scrounger territory. Why is it so abhorrent to you to accept that these illnesses can and do completely fuck peoples lives up.

It's a bad thing because I don't need training or support. I know perfectly well how to get a job and I'm extremely competent at work. What I need is my body to function, which it doesn't.

I would love to have a job but it's an unrealistic goal. People are worried because they don't have the option of eschewing the impact of their disability, regardless of how much mental fortitude they might have. It's not a case of mind over matter like it would be in an abled bodied person.

And all this talk of healthy eating is truly ironic when the government is planning on taking away the money people need to buy food and related services with.

Okay, so I get that the extreme exhaustion comes in unpredictable waves and the OP has no control over how severely the exhaustion manifests. But if that's the case, I don't understand how she always has sufficient energy to drive a 30 mile round trip, twice a day, at specific times?

Did she say she ALWAYS does though, or are you just making that up

No, not making it up, I don't think? She says there is absolutely no other way her DD can get to school.

Ok cool, I’ll sack off my daughter’s education and instead find a job which is 2 hours per day with a 6.5 gap in between so I can rest. There’ll be loads of them going, right?

But yes, you are making it up, because she didn’t say always. And just because she said there is no other way for her child to get to school, doesn’t mean she always takes her.

It's quite clear in the original post that the OP has to go back to bed in order to manage these relatively simple tasks.