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?

I had flu this year and despite being sick I was still able to eat very simple decent meals. I got in a supermarket delivery and sensible pre-prepped meals (jacket potatoes, pre made lentil soup etc).

If you can sort a pizza in the oven you can sort a microwave jacket and a tin of baked beans.

We aren't talking about cooking a 3 course meal we are talking about yoghurt and fruit instead of a potnoodle, sticking a jacket potato in the oven instead of pizza. So much info is available regarding processed foods and negative impacts on health.

I've every sympathy for anyone struggling but simple healthy food is just as easy to purchase and eat as pizza coke and pot noodles.

CFS/ME isn’t just “feeling tired” like you would after a day of not eating great. Any serious fatigue based condition entails fatigue that is not at all like normal tiredness.

Again, you don’t understand what it’s like to have a serious fatigue-based condition.

Nope. I have a condition that is similar to OP’s though not the same, and when I lived independently with carers I very rarely could have made a jacket and beans. Again, the assumption that that’s easy comes from your experience as a healthy person.

You are very lucky not to understand this. Try to practise empathy.

Yes I had an awful bug last year and I made a point of drinking litres of water and eating loads of fruit, healthy soup as you know when your body is under stress it needs all the help it can get to fight illnesses.

I do have a chronic fatigue based condition - severe endometriosis. So I know what it’s like to be dog tired and in pain.

I also know that eating as well as I can even when I don’t want to massively improves my life and my condition.

It just doesn't make sense to me to remove money from the disabled. It won't make them magically able to work.

Say "Judy" loses some of her benefits. She uses her PIP to buy groceries, to keep her house warm, to get taxis, to get her hair cut and a pedicure because she can't manage getting her foot up to reach her toenails even on a good day, and though her partner will do it, she knows he secretly doesn't like it and it makes her feel awful to ask, she uses it to get to the leisure centre to do gentle exercise and swim sometimes, she uses it to buy the grandkids books etc.

She wouldn't magically find the money for this somewhere else, or be able to work, she would just try to stop spending anything and live on less. Which means one less customer for the taxi firm, the hairdresser, the local shop, the leisure centre, the charity shop.

Stopping people spending doesn't help the economy.

Go on, please explain to everyone how wildly different it would be to put a bag of steamed veg and a pouch of rice in the microwave vs filling the kettle, boiling the water and pouring it into a pot noodle.
Or the difference between putting a put of fresh ready made vegetable soup in the microwave vs putting a pizza in the oven?

You’re repeating the same thing over and over but you seem to be missing the logic part.

Sorry but if you don’t use PIP for the purpose to which it is intended you shouldn’t get it. This is what annoys people. Why should you get money to help with your bills that someone without a disability doesn’t?

If you can sit on mumsnet for a couple of hours between midnight and 2 am I'd argue you have time to do an online shop, prep a jacket potato, and obviously not chronically tired since awake on phone.

There isn’t a straightforward right and wrong with CFS/ME. I’m not interested in nitpicking her behaviour when she’s here for support. I’d rather trust she knows her own judgment. And when it comes to eating, she is doing the right thing to get in any calories she can, contrary to what PP think, because of the known association between CFS/ME and serious nutritional compromise. In CFS/ME, fed is best. The worst thing she could do would be the make the perfect the enemy of the good and reduce her food intake trying to pursue “healthy” eating.

What is seen as healthy by society can be very different from what a person needs in a certain situation. You’d be amazed at what I have been told to consume to keep my weight up in the past!

You’re very lucky not to have personal experience of a fatigue-based condition.

In fairness, the OP said she stopped and went into a garage to buy a can of coke.......

No matter however anyone wants to defend her inability to put soup in the microwave rather than make a pot noodle, buying a coke rather than a healthy drink and snack is 100% a choice.

With everything we know about how food impacts inflammation in our bodies and how it intersects with health, it's crazy to suggest OP couldn't make tiny tweaks that would help her manage.

There are plenty of us here who understand how debilitating CFS is, and still think that better choices would help OP.

I'm sorry you have a similar condition. Genuinely, how is harder to put a jacket photo in the oven rather than a pizza? How is harder to have a bowl of oats and fruit than have fo fill a kettle, switch it on, wait for it to boil and then wait for the pot noodle to be ready? The yoghurt is much simpler.

I'm not being goady, I understand illness believe me but instead of 'I can't make a jacket potato' think I don't need to make it, I'll just pop it in the oven.

Some of the posts on this thread ironically and sadly indicate why the pip reforms are happening.

Trust me if you’re a high earner and comfortable financially you wouldn’t bother putting yourself through the pip assessment process.

that being said I’m sure it probably does happen but I’d say a very low amount of people.

This quote is mad! PIP isn’t for getting your hair cut, or to buy groceries. It’s a benefit to fund treatment to address your disability without having to dip into your salary or other benefits. Ie therapy and extra medication required to control your condition. If this is what recipients of PIP think this is what the money is for, then we have a problem…..

What about the impact of households with expected incomes of up to £99,999k EACH claiming 30 hours of free childcare a week? From September, this will apply to all under 5s. Nobody seems to care about that though, nor that people earning in excess of the threshold can simply overpay their pensions or mortgages to get round it, which would be considered deprivation of capital if a UC claimant were to do the same thing.

I think that posters are trying to say that putting a jacket potato in the oven and spooning cottage cheese over (I believe extra fat in the diet is good) is as easy as a pizza. There is a choice in that.
Perhaps buying pre roast chicken and boiling some eggs, choosing fruit with Yoghurt, boiling whole grain pasta and adding pesto (not suggesting making it), buying pre poached salmon and snacking on hummus and carrot/cucumber/flatbread.

This diet is clearly not going to help in its current form and there are healthier choices that don’t take huge amounts of effort.

It is possible to 'cure' CFS. Do you know what the cause is? It is generally either viral (exaserbated by stress) or linked to insulin resistance or a combination of the two.

If you are not already I would suggest getting a high dose vit d supplement and as much sun as possible (do you symptoms lesson in the summer?).

Do you have any belly fat? If so you also want to reduce insulin by going as low carb as possible. If you have no energy to cook buy pre cooked meat, leave healthy low carb snacks in the house (e.g plain nuts), greek yoghurt and just eat those for a while.

Dr Berg has some good videos on this e.g
d

Not trying to merail at all, but our situation is similar in that the PIP my husband receives is swallowed up just trying to stay afloat. There is nothing left to pay for anything that might help him.

As I have also said on so many other benefit threads; if we are put in the position where I can financially no longer be his full-time carer, because I have to go back to work, then the care he needs will need to be provided by the local authority. It will cost them thousands. Far more than my whopping £81.90 per week carers allowance. So how do these changes actually save money? Clue: they don't.

I know I'd struggle to be awake on mn for hours at night if I.was chronically tired. Too fatigued to work but OK to focus on mn for hours at a time. That's exhausting. So is working.

It is not dehumanizing them a previous poster said they need the money for heating etc thats fine give them vouchers for heating. A voucher for there therapies they provide receipts for the therapy and aids and then the money will be refunded or do u have a better idea to stop people scamming the system and hording thousands. This is exactly what is wrong with our country

You can buy frozen baked potatoes ftt et in the next cabinet along from the pizzas!
Chucking a bag of frozen chopped soup mix veg on a slow cooker with a bag of chicken stock to cook overnight is no more difficult that making a pot noodle.

Once disabled people have an equal chance of being employed, and other benefits are enough to cover living costs, we can start calling out people for not using PIP for its intended purpose. Part of mine funds my Motability car, the other half goes on basic living expenses because I can't afford bills otherwise.