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?

Good diet is imperative for good health. Drink coke and eat crap every day even withiut a diagnosis and you will feel rubbish. Drink water and eat yoghurt, fruit and veg and you are improving your overall health.

Historically it was a bit of a shit show though.

It would be nice to maintain what we achieved post war, rather than revert to the sort if thing people campaigned and worked heavily to change.

Not everyone has family who are supportive though, do they? The point I was making is, that it is down to the individual how they spend their PIP. It is not for people to cast judgement on the person, with the disability using their PIP, for whatever purposes make their lives more agreeable.

So how come I’ve had an experienced specialist NHS dietitian specifically tell me to drink Coke and other fizzy drinks?

Could it be that recommendations for what to eat and drink are somewhat personal and not 100% universal?

Anything can be disability related. That’s why the payment is universal and paid as a cash benefit. I was a disability outreach worker for many years and l’ve seen people living with levels of disability that would flatten most people. So forgive me if l find the way this thread has predictably descended into yet another benefit bashing exercise disgusting. People who clearly know little about disability or why these benefits are paid, are actually suggesting that disabled people’s needs should all be lumped together and they should told how to spend their PIP. It’s ludicrous. PIP claimants who use their mobility component to lease a motability vehicle are using it in exactly the way it was intended - the most cost effective way of getting around. But they’re still criticised for taking part in a scheme directly intended to help them.

l’ve seen people with bladder and bowel incontinence whose washing machines and tumble driers are on constantly - they also have to bathe frequently. I’ve seen those with electronic devices essential for everyday life unable to afford to charge them because the cost has gone up so much. People who can’t get on and off a toilet or wipe their own arse without help. All of this is disability related and costs money. The cut they’ve made to PIP may not be popular, but at a stroke it’s taken the benefit out of the hands of those with low level needs who don’t have much in the way of ongoing costs, and put it back into the pockets of those for whom it was meant - people with significant and severe disability.

How many people here whose only interest seems to be the extra money, would be prepared to take on the disability that goes with it ?

I have no idea why an nhs dietician would suggest you drink coke. None whatsoever other than incompetence.

That’s what I said. But I also said it won’t make OP (or me) better.

And for the record, OP has said that she doesn’t always eat like this. There are days where she manages more nutritious food, which people seem to be overlooking.

And like @verysmellyjelly keeps
pointing out, medical dieticians will also advocate ‘fed is best’ in cases like this.

This jumped straight out at me and I mean it without any judgement whatso ever.
How old is your daughter? A slow cooker with everything bunged in is absolute minimum effort?

Niece is doing BSc in Nutrition and says fizzy drinks are never recommended to anyone at all, no matter what.

Situation is rubbish. Policy changes are drip fed. This is the direction of travel.

The effort it takes to cook is a problem, I eat carrot sticks and houmous for lunch often. No prep if I buy carrots ready cut, although I sit down at the table to prepare fresh carrots as I like them better. I have found an airfryer really useful, I do cook chicken pieces in that, but it's useful for beanburgers, fish fingers etc. and really easy to clean after use, unlike an oven. Eggs, I can rest as they boil, or an omlette is very quick so I don't have to stand for long. Cleaning is usually neglected, but I have perfected the art of sit down vacuuming, when it's necessary.

I would feel like shit if I ate pot noodles, coke and pizza - have you looked at eating proper food? I’m not being an arsehole, but feeding yourself utter crap like that is never going to help.

@Pistachioitaliano
If Pip is abolished and people have no reliable family it was the workhouse, slums or destitution is that the type of society we want to go back to. People seem to think that all these people on benefits are suddenly milking the situation and that none of these situations occured in the past that is because we had
workhouses
orphanages
slums
child vargrants
and the actual mortality rate was higher because people were locked up or hidden due to their disability, or as children or teenagers left to die or abandoned and died.

I say that as someone who does not claim benefits and have always worked. I say that as someone who also due to my RA find opening a can of coke a breeze but opening a can of beans or any can painful and difficult.

I am not saying there aren't people taking advantage of the system but please please so many families live away from each other, or are in that awful situation of having children to care for and older parents to care for.

Compassion anyone

I have been under an NHS dietitian for weight gain purposes, and have never been told anything so ridiculous as what you are saying. IF, I was ever given such advice, there is no way that I would be taking it, and would be questioning the quality of food education/ knowledge, that person had.

'medical dieticians will also advocate ‘fed is best’ in cases like this'

Oh yes I don't think anyone is advocating starvation.

The problem is we've had a pp post extensively about why a fork can be used for a pot noodle but not a jacket potato. The oven can be used for pizza but not for chicken or a jacket potato. One can press a button to boil a kettle for a pot noodle but not a microwave to cook some veg. We've had excuse after excuse and sadly it demonstrates perfectly why these reforms are needed.

This thread reminds me of the reporting of food poverty, where the poor were blamed for not knowing how to cook.

Chronic fatigue syndrome is not well understood, just like long COVID is not well understood, nor is curing the results on the body of long term trauma.

Gabor Mate’s The Body Keeps the Score is insightful. Before you criticise the disabled, or those who have suffered trauma and are having a tough time getting out of it, have a read

It is likely at some point in our lives, all of us will be disabled. Some for short periods, some right before we die, some throughout their life. All of us are vulnerable.

The Labour government has betrayed what it stands for—solving the economic crisis should not be on the backs of the disabled.

Compassion anyone

On MN ? You only have to look at the number of benefit bashing threads to know the answer to that.

Yes - the Tory manifesto had cuts to welfare of more than double what Labour has done. Of course now they’re saying how obviously they’d have done it in a better, fairer way. But more than double the cuts without anyone suffering? Give me a break.

Don’t be so horrible to someone obviously struggling. I doubt she wants to be living on pot noodles & frozen pizza. I’m sorry you had breast cancer. But you’re not her, and don’t have the exact same challenges, assistance (or lack thereof) as she does. Being a cancer survivor doesn’t give you a pass to be nasty to other sick people.

Yes and can open a can of Coke but not a tin of tuna

If you can afford it, I highly recommend a robovac. That’s the ultimate sit down vacuuming!

We cannot support having 9 million people out of work/claiming record highs of benefits any longer. It has to stop. My DB works in Private Wealth Management in the City and 1% of taxpayers fund over 30% of all tax revenue. This is insane and cannot continue. In fact, it won't continue because droves of his wealthiest clients are leaving/moving their money abroad.

That PP is me, giving specific examples of how food access is difficult. Do you think I shouldn’t be receiving PIP, then? Did you actually read my post about the nature of my disability? I can repost it if you missed it.

Firstly, nutrition helps everyone, but it doesn't cure ME/ CFS. Having one of these conditions is very, very different to feeling like lying around all weekend - presumably if you had to be somewhere, you would have been able to do it. The fatigue OP describes is more like having the flu and not sleeping for three nights straight at the same time.

Secondly, let's go through the steps for the baked potato and beans vs the pot noodle. As someone (with different conditions to OP) who has at one point been on the pot noodle level of ability, and is now fortunate enough to be on the baked potato and beans level of ability, I can assure you they're very different.

Baked potato and beans (in the microwave, which isn't really a baked potato):

• Get potato out
• wash potato
• stab potato with fork
• score potato with knife
• get plate
• put potato in microwave
• switch microwave on
• Get tin of beans out
• (if required) find adaptive ring pull opener gadget
• open tin
• pour beans into bowl
• (depending on appetite) find tupperware
• (depending on appetite) pour half the beans into tupperware
• (depending on appetite) put lid on tupperware
• (depending on appetite) put tupperware in fridge
• Get potato out of microwave
• Put beans in microwave
• Cover bowl of beans
• switch microwave on
• open potato up
• Get beans out of microwave
• Uncover beans
• Spoon beans onto potato
• Eat
• Wash plate
• Wash bowl
• Wash knife and fork used to eat
• Wash spoon used to scrape beans out of the tin
• Wash sharp knife used to score potato, assume you ate with the same fork as you used to stab potato.
• Bin tin, or wash out and separate the paper for recycling

Now for the pot noodle:

• Get pot noodle out
• Put water in kettle
• Switch kettle on
• Open pot noodle
• Pour water into pot noodle
• Stir pot noodle with fork
• Eat
• Rinse fork
• Bin pot noodle pot, or wash for recycling.

I have ME/CFS. If I ate a pot noodle I’d crash for days. If I drank coke I’d get a migraine.
I’m not saying it’ll cure you (it won’t, I’ve tried everything) but you need to clean that diet up. There are cleaner foods you can grab to eat rather than stand cooking (I can’t do this either)
You have to eliminate additives for a start. Even the smell of a pot noodle would ruin my day.

It’s a very real condition, people struggle to understand it. It can be very disabling. Finding triggers and eliminating them is a good start.