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?

Well done for getting pip for CFS/me - that's no easy achievement. Am currently going through the process myself. Sounds like you are really struggling. Also the complete lack of proper support to help manage your condition is really unhelpful.
As a fellow sufferer, I totally understand the food angle but your diet won't be helping you. I have things like plain yogurt that I can add fruit and nuts to, hummus/cottage cheese and crackers, simple salad bits, decent bread/pittas to toast, eggs, ready cooked chicken etc. Do at times rely on best quality ready meals I can.
The PIP proposals are completely rubbish - whilst pip does need an overhaul, the tweaking proposed is not going to work because it isn't addressing the actual issues.

Because It's for treatments, regulars mris, surgeries. I have to go to London every 4 weeks as part of a drug trial. I have a rapidly changing rare progressive condition this means I need regular appointments this condition effects multiple organs which means I need regular cpet, echos scans for heart. Regular mri for brain and regular lung function tests. All of my consultants want there own tests so don't like me having them done locally and sent over the only one that will accept this is the heamotologist and because my condition is rare local drs will not see me its specific specialist I'm under where there is only 1 or 2 in the country which means traveling. But because I can lift a fork to my mouth and can wash the bottom half of my body with aids I will losing pip and lcwra

Yawn yawn the government should look after me coz I don't help myself, yawn yawn I live on pot noodle and pizza and wonder why I'm ill, I can answer that you have wheat dairy and additives, that'll do it

It makes a difference though. Anyone eating like that would feel like absolute shite, I have an autoimmune condition and if I don't watch what I eat I end up bed bound too (sometimes I do anyway, but diet absolutely has an impact). If someone is up for boiling a kettle for a pot noodle, cooking frozen pizza then there could be better (and cheaper) choices for the same expenditure of energy.

No, but managing lifestyle factors can help (not eradicate).

@PIPsqueakybum have you heard of the chrysalis effect programme for CFS? I know people who have done that and vastly improved their symptoms. Also cureable app is extremely helpful at understanding the route cause of CFS. On the cureable website there is a success story of a lady with crippling CFS who is now cured. Hope this helps. All the best.

I think the chances of you losing pip are extremely low given everything you have said here. Your scores will be fine.

But you do realise PIP needs to be looked at as it’s not sustainable in its current form? I appreciate people who receive it are wanting to fight tooth and nail to maintain it and not want any kind of review, but as it stands it’s running out of control, and increasing year on year. I don’t agree that it should be a benefit in work payment, because you get the ridiculous situation whereby someone earning £100k per year is entitled to receive it. That’s madness and has to stop. It should at least be means tested.

Every single thing we put in our mouths has an impact on us…a friend has ME and lives on plain fish, chicken, nuts, fruit and cereals. It won’t make the OP be cured of her condition but she will feel a difference, I am sure if I had to live on her diet I would feel pretty rough 😟

Try to make a change, OP, and let us know how you’re getting on in a couple of weeks. Jacket potato/tin of tuna. Salmon or chicken and pasta. There’s tons of things which don’t take long to prepare.

Good luck, you might just feel a little different ..? Not cured, but a feeling of being able to cope better

I'm not sure i get high rate for both but it was a fight as because its a rare condition the pip assessor obviously didn't understand it which I understand most drs dont its a nightmare when i have to go to a&e. she repeatedly ignored what my drs said and lied a lot. Pip is to specific and doesn't take into account rare conditions if you read the descriptors they just don't always fit with the actual problems you have and they have no interest unless you fit into the specific categories so if you can put a ready meal in the microwave more then 50% of the time that means you can cook. If you can lift a fork to your mouth it means you can take on nutrition. If you can dress yourself and shower with aides more then 50% of the time it means you can do these. Even if you need supervision and someone to wash your hair and wash the bottom part of your body that's still not enough points you only get 4 points if someone has to wash the top half of your body.

Chronic fatigue from eating pot noodles and pizza and lazing in bed probably.

You are probably depressed, lying in bed all of the time. As the weather gets better I would suggest sitting in the sun a bit,
Also however you buy your food, by better food, ready made salad, eggs to boil and scramble, protein, liked chicken you could pan fry, or cooked chicken, broccoli .
Food easier to cook or eat, bananas, and don’t buy pot noodles which are like eating cardboard, nutritionally.

I worked with a girl. She didn’t work, and never had, but she played computer games and had a fancy new telephone. She didn’t shop or do the washing her MIL did, but she could go to the pub, and for our meetings, and get the bus.

But she couldn’t possibly work it would be too much. But she could have, she chose not to.

You do a self employed job, you can do more.

Have you looked at your diet? A better diet might mean more energy? Coke, pot noodle, pizza all low in long term energy. You'll get high sugar then drop, as you experience. Have you had diabetes test?

I do think this is a huge part of the problem OP. Food is your body’s fuel. You wouldn’t expect a car to go very far on some dust.

I obviously don’t think it will fix all your problems but it would at least go part way to making your energy levels more like a normal persons (any person would feel terrible on what you ate) and looking at your food choices would stop it exacerbating things

i have microwave veg bags in my freezer - would take the same effort as a pizza. Agree with quiche. Or even a cheese sandwich. An instant pot porridge

@PIPsqueakybum I have to agree with the eat better comments.

I think what little energy you have should be spent on making you feel better overall. Now I appreciate this isn't easy or achievable every single day.

I don't know much about your condition or your daughters SEN, but are there local charities that could help you out? I'm thinking a bit of one off home help like sorting out your freezer, find someone who would be able to take DD to school once or twice a week or even teach you some really cheap & quick meals to make. (My lunch today is couscous salad = small pot of cheese & olive mixed in, i often do steam veg couscous or rice & zaziki ... all very easy and healthier than pot noodles) In addition maybe Dad could step up a bit more?

i can appreciate that your condition will mean you are unable to cook a ‘proper’ meal however if you are able to put a pizza in the over why not some chicken in the oven and then microwave some veg. Pot noodle … boil some pasta and add pre made veg based sauce. There are healthy options then require the same effort as you are already putting in.

It must be a worrying time and I like lots am lucky to have good health however there has to be some level of responsibility on your part to make sensible choices to give you body the best chance.

This.

Also being on phone between midnight and almost 2 am would make you tired in the day! Put the phone away too.

I agree that it's about the money. I think it's also ideological. I firmly believe that the government wants to stop paying out disability benefits to almost everyone who currently qualifies. It's quite clear that the mobility component will be the next to go; you only have to look at all the anti-motability car rhetoric in the news currently to see that the public is being briefed against that element of PIP.
I also think these changes will go through because not only is the government refusing to consult on them, therefore silencing disabled voices, they're also expecting MPs to vote on the proposed measures long before the impact assessment is available. It's straight out of the Johnson/Trump/authoritarian playbook.
Hopefully more assistance will be there for people renewing their PIP claims in order to circumvent the disadvantageous changes being put in place but many will still slip through the net. I've never heard so many disabled people question the validity of their lives since the proposed cuts, nor so many former Labour voters saying they can never vote for the party again. Cruel and stupid sums it up.

What does your teen dd eat?
Can she do a weekly online shop?

From the information you give regarding the points you have then yes, if the Pip changes go ahead you will lose this benefit at your next review unless your condition worsens and you are awarded higher points scores.
There are hurdles to clear before the proposed changes come into affect though so the outcome may well be softened.

Loads of people worry about losing their jobs all the time.

You will have to wait and see what happens.

Try increasing your hours gradually and improve your dietary choices. Start by adding a piece of fruit and some raw vegetables.

It’s very unhelpful to brush off the diet comments.
The reality is if a fully healthy person with normal energy levels had a coke, a pot noodle and a frozen pizza while napping all day they would also feel like shit.
Some people might says it’s harsh, however I don’t think it’s unfair to say that you’re not helping yourself and at some point personal responsibility comes into it.
We can’t keep the same level of disability benefits for people who can’t be bothered to help themselves. If you made a bit more of an effort you would almost certainly be able to function better and therefore would be able to work more than 10 hours a week to support yourself and your child.

There’s also the fact that you couldn’t possibly have done any more than one short online meeting for work, but you can stay up until 2am posting on mumsnet!
Again, I would struggle to function the next day if I was pissing hours away on the internet in the middle of the night.

You need to take accountability for your lifestyle. Go to bed at 8:30 and force yourself to get up at 7:30 for the day, every day during the week.
Eat a decent diet.

I think it's shocking that people are set to lose both PIP and LCWRA. I don't understand why they are making LCWRA dependent on PIP ? I do think changes to the system need to be made but this seems heartless.

This

Agree it's leaving people with nothing and no options. Taking money of people isn't going to make them all of a sudden not disabled. It's not even giving people the option to work part time. It's either you work a 40/50 hr week or lose your home and die

I think something will be done about mobility continuing past retirement age. It's hugely unfair currently. If you put in for PIP mobility a couple of months before turning state pension age you can potentially get £75 mobility component or a motorbility car for the next 20 + years until you die. Have a massive stroke and become bedbound one day after turning state pension age and you can only claim Attendance allowance which has no mobility component.
I had a client at work yesterday a couple of years over state pension age getting full rates of PIP, State pension, pension credit all rent paid and council tax paid. With no rent or council tax paid she is being paid almost £500 a week in benefits just to live off then all rent etc paid on top so near £700 a week ! On one person !. To have so many going into retirement age on this level of benefits is completely unsustainable. I can see why they want to get people off PIP before retirement age. I work in benefits for older people and the main thing we get asked about is motorbility cars and why can't they get one. Older people carry on driving much longer now and everyone feels they should have one !