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?

lose the LCWRA element of PIP Do you mean UC?

don’t have any more than 2 points in any descriptor. I will then be on the basic rate of PIP again, do you mean UC?

It is awful. But nothing is set in stone yet. Maybe the proposals will not be quite as harsh in the end. All you can do is make sure you get some help when your PIP reassessment comes around.

I hope the benefit bashers don't land on your thread.

I don't have any advise its just shit. I honestly don't know what people will do myself included i get pip and lcwra. I work part time, I genuinely can't do anymore anytime I try I end up hospitalised for weeks at a time. If I lose pip and lcwra I won't magically be able to work full time so all that will happen is I won't be able to pay my bills il end up homeless, lose my job and then kill myself as there will be no point anymore if I'm living on the streets

Sorry yes, I edited it. The brain fog is real.

Honestly this is how I’m feeling too. I only make maybe £300 a month in earnings but if I lose that as well as losing PIP and LCWRA, I literally won’t be able to survive. Maybe that’s what they want.

OP - not the point of the thread but have you looked into eating more to help with CFS? I had it really bad for a few years but now have it mostly under control to the point where it doesn't affect me day to day anymore. Eating to fuel my brain and body along with pacing really helped me. I would eat around 6 or 7 time a day, sometimes just fruit and nuts, cereal etc. After a few weeks I really noticed a difference.

It is worrying.
But remember for now it is just a green paper. It is just floating ideas and nothing will happen overnight anyway. The gov are not even consulting on it properly. There is so much pushback on the proposals. I don't think most of them will happen.

It honestly feels like it because the suicide rate will skyrocket because people have no options. It's the fact there isnt even any middle ground they don't even seem to be interested in helping people who can work part time. The majority of disabled people who are currently on pip will not be able to work a 40/50 hour week.

I'm sorry, you're so worried. When are you next to a review?

Lot of scare mongering going on and not a lot of actual details and it has a long way to go yet.

*Stress makes cf much worse. I think the only thing you can do at the moment is try and put it out of your mind as much as possible. I know it's not easy.

I got my first award letter today, I got one f4 the daily living and one 4 in mobility. It is full of mistakes. Some against me and some in my favourite. It's only for one year so I'm not sure whether to appeal it now or whether to just leave it until the review is due. It's all a bit of a minefield.

but yes, just to repeat myself none of it is set in stone and there's plenty of time for what they're saying to change several times. I think the best thing you can do for your health is to try not to worry about it until a lot more is known and passed.
🤗

Yes I have seem people express suicidal thoughts about this. How are we meant to live on what is it - £70 a week? And get threatened with sanction for not trying hard enough to find work when no one will employ us because we are too risky to take on.

I snack as and when I’m awake but it’s not necessarily very healthy stuff, getting to the shops or even having the energy or remembering to do an online shop is a huge issue.

I really hope not. I never thought anything could be worse than the shitshow that was the Tory government, but here we are.

Review is early 2027 but I guess I’ll get the form a good while before that. Trying not to stress about it but it’s hard.

£70 a week wouldn't even cover my hospital transport let alone actual bills. I'm currently working part time but only because I had this job prior to being so ill. If I lost my current job nobody would hire me as I'm never there on paper I'm a terrible employee

Exactly, if I went to an interview and was honest about my health there’s no way anyone would employ me. And if I lied and got a job, it wouldn’t last very long as I’d do one day and then be too tired to go in for at least the next 2 days.

I'm the same i need recovery days i couldn't work 5 days in a row i would never pass the 12 week probationary period

I really hope no one decides I'm fit for work. I've got a different condition but I have to pace myself hugely to get anything done. I manage to do some extremely part time artwork, but I can only manage a few hours a month on that. All my energy goes on just getting through the day. I was out for a couple of hours at the weekend so I haven't been able to wash or change my clothes today.

There's no way on earth I can even look for work, let alone get a job. I already barely survive through each month. I don't even have the energy to sell things on Vinted for extra cash.

There is not even enough jobs out there anyway. Isnt it something like 800k jobs and 1.7 million job seekers. Chuck people off benefits and there will be even more competition. Employers are not charities. They want to employ the reliant and skilled
No one would hire me either. I would not even get an interview anyway

I've read your message and am empathetic about your situation. I'm curious about your diet: a can of Coke for breakfast, a pot noodle for lunch, and shop-bought pizza for tea. The nutrition is not good. Perhaps try a diet that aligns with the 'eat well' plate to help your energy levels. I'd be tired all day if I ate all that processed junk.

Your day describes mine almost. I often say I think I have ME as I feel constantly exhausted and can’t do too much. DP doesn’t understand and thinks I should do more exercise but doesn’t realise that tires me out more. I totally feel your pain with that regards.

I’ve never bothered going to the GP because I don’t feel they’ll believe me because there isn’t an actual test and is down to individual experience. I don’t think everyone feels this tired but I feel people would think I’m telling lies so I rarely tell anyone. I don’t receive any government help financially as my DH supports me but I’d be screwed if he left.

It’s a sad state of affairs but you’re NBU to worry as it seems it’s easy pickings for them

Me neither, I have about 6 bin bags full of clothes that I’ve been meaning to sell for at least 5 years that I haven’t had the energy to list. Most of it will be so out of date now that it won’t be worth anything anyway.

I understand. I can only work part time due to paranoia & fatigue as have Schizoaffective disorder & epilepsy so on lots of meds (that are not very effective so I get paranoia, hallucinations, mood cycles of depression & hypomania, also partial seizures).
I get PIP which helps me financially but I am struggling to stay in work due to my symptoms.
but I would probably struggle to meet the new PIP criteria.
I have an award until 2029 and Im hoping things will be a bit chaotic for a while allowing me to do some training to do a wfh job that might pay well fuck knows what.
At present I’m a pt care assistant but I know I’m really slow at my job although I’m thorough & conscientious.

No the nutrition isn’t good, but to eat non-processed food (ie make meals from scratch) requires energy that I very rarely have.

Same here. Loads of stuff and clothing all in bags. My house is full of it. I dont have the spoons to deal with it all. It is hard enough to get through the day.

I have days where I struggle to shower and cook meals, even just to switch on the microwave. Which is ironic given my job!! But I don’t go to work on the bad days.
if my meds worked 100% I would be ok.

This is my worry, CFS is one of those conditions they can’t test for and so it goes on self reporting, so in terms of providing evidence it’s hard. And I know even a lot of GPs don’t really understand it or believe in it, although luckily mine does. I don’t have a husband or anyone that can support me if/when I can’t support myself.