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?

A diet of pot noodles, pizza and coke is appalling. No one would feel well on that. If you can’t be bothered to cook eat a banana and weetabix, drink water, use a microwave meal.Get out for a walk, get off the screens.
There must be some self help here, each individual must make an effort to keep themselves as healthy as possible, before expecting other hard working people to fund them.

This thread has exploded since I posted on it this morning. So many disgusting comments, and this in spite of a number of posters expressing suicidal thoughts. So many people eager to kick a person when they're already down.

I despair at what we have become. It's shocking that people are interrogating OP like this. The media, in tandem with the government, have really pushed the idea that disability benefits are claimed by lazy snowflakes and fraudsters, parroting ignorant sweeping statements and buzzphrases like 'financial black hole', 'unsustainable' and 'out of control'. Look at the stats, look at the rate of disability benefit claimants in EU countries and you will see that they are in line with our own rates, some a fair bit higher.

The gov are making cuts in places that they believe will affect those who are least likely to vote for them. I wonder which demographic might be least likely to make it to the polling station or faff about with registering for postal votes? 🤔 Ah but some Labour voters might think it cruel, so let's ostracise them by pushing this narrative, let's make people think the UK is somehow unusual in this, let's make sure we maximise media coverage. Oh and it will keep a lot of Conservatives happy too, it's a win-win.

And people have fallen for it.

Disability is the only protected characteristic where the magnitude of hate comments seen on this thread would be allowed tbh.

It would be amusing if they meant me, too, because I went for a very nice walk first thing this morning, and am now posting from my conservatory on my lunch break enjoying the sunshine.

Friday, on the other hand, I was in too much pain to get out of bed at all, to the point where I had to work from bed, which thankfully is possible in my profession.

We do what we can when we can. For many of us that varies from day to day, or even from hour to hour. And on a day when we can't, we sometimes have to accept that, do our best and wait for the next 'can' day. And that's what a lot of those frothing on here aren't able to comprehend.

My DD is just young and small (she's 10) and my DS has dyspraxia (he's 13) but isn't that big either. Both can open soft drinks cans but not beans (DD has worked out how to use a knife to lever it but DS doesn't have the dexterity).

This is why I think the OP should get more points than she thinks she will get on the PIP assessment. She is not reliably able to prepare food for herself - not even enough calories, let alone enough nutrition, on some days. She needs assistance.

When we do my DS DLA renewal we say "he can't attend X without Y support". In some cases he does attend WITH support but in others we can't find a setting that will take him. That doesn't remove the fact that he can't attend if he doesn't have support.

I’m sorry to hear about your family member. The physical repercussions of a bereavement will affect you too, no doubt.

I shouldn’t engage really, but I also have OCD and although not directly linked, it has the effect on me that I’m like a dog with a bone sometimes, especially when I’m defending myself.

I’ll be going in to bed soon as my daughter is off to work.

Sorry for your loss. 💐

She gets PIP currently so presumably she’s referring to the points she was awarded. But I totally agree with you, she ought to be awarded more. Even if she can cook some days, it doesn’t sound like she can cook from fresh ingredients reliably.

I think you need to improve your diet. I would feel very ill and completely devoid of energy if I ate what you've described.

Thanks @ruethewhirl and @HÆLTHEPAIN🤍

'They’re so ready to tell us what to do, absent any knowledge of the circumstances…'

Many of us will have illnesses, disabilities, family with disabilities, extensive knowledge of health care and disabilities.

That is why some comments have been challenged.

Those with genuine disabilities would roll their eyes over a pp disputing that a can of coke is easy to open but a can of tuna not hence junk food the only option.

Reforms are sadly necessary, here we see why.

Yep. The levels of ignorance some people are parading on this thread about how the welfare system actually works would suggest exactly that.

Since that was my post, you’re saying I don’t have genuine disabilities. Let’s be absolutely clear about the implication of your post here.

So spending 98% of my time in bed, severe medical problems affecting most organs, taking 30+ pills a day, multiple medical teams involved, wheelchair user since 2008, unable to go out alone, PIP awarded first time without a face to face assessment based on the overwhelming medical evidence I supplied… and yet you think you have the right to say I don’t have a genuine disability?

'Since that was my post, you’re saying I don’t have genuine disabilities. Let’s be absolutely clear about the implication of your post here.'

No, i haven't said that at all.

The coke can v tuna can thing was discussed by many posters.

For further context, the PP who claims to have “extensive knowledge” of healthcare has also claimed to know better than specific, senior members of an MDT who had key roles in my treatment, and has claimed they must have been incompetent.

You have to shop regardless, as pot noodle and pizza need to be bought too.

I could think of a ton of foods that are healthier and do not go off quickly nor do they need a lot of time to prepare. The fact that you don't seem to be able to suggests you just know a bad diet.

As people have said you can go for nuts, beans, cheese will be good forever, there is packaged rye bread that can sit in your cupboard for months before you open it, even some bake at home baguette, some yogurts are good for a couple of weeks, microwavable rice if you aren't able to cook any yourslef, most veg can be frozen or comes frozen already. Longlife milk. Muesli. The only things I worry about going off are meats (for my sandwich) or fruit.

I have a genuine disability. It makes perfect sense to me that opening and drinking a can of coke is an entirely different beast to opening a tin of beans, decanting it, heating it, making toast, buttering the toast, putting it on a plate, then washing up everything afterwards.

Things that seem ridiculously easy to someone in good health are not so for someone struggling with a disability.

Sorry, a dietician should not recommend coke.

Lol, that’s absolutely what you were implying. You replied to many of my posts about it. At least own up to what you’re saying.

I lost the ability to have a bowel movement several years ago.

Not. A genuine. Disability.

I was on the shielded list during Covid.

Not. A genuine. Disability.

I get free prescriptions, not because of our low income (we don’t claim any low income benefit) but because of a special exemption for people with severe disability related needs.

Not. A genuine. Disability.

I get many hours of care every week funded by social services following a rigorous assessment by trained social workers.

Not. A genuine. Disability.

What is the nature of your daughter's SEN please? Genuinely interested.
Do you live somewhere remote?

QED, folks. She still thinks she knows better than the senior, specialist professional within the specialist MDT, who helped keep me off TPN!

It definitely would have been better to get a central line put in my chest, risking blood clots, sepsis, and liver damage from the TPN! So much safer than a bit of Coke! Why didn’t I think to go for that option?! I wish I’d asked MN at the time!

Old enough to do the online shop then

Lots of shops do a nice mixed bean salad in a tin at around £1. You open it, put a bit of salt and pepper or squeeze a bit of honey mustard dressing on top and done.

I make myself a salad, but as an emergency meal if I was ill I would absolutely eat it.

Not the same as opening a can of coke. But you compared a can of coke with beans on toast, which isn't the same either.

In which case, what the fuck is the OP doing behind the wheel of a car. If you are alert enough to safely drive a vehicle (OP took her daughter to school, quite a long round trip from her description) then I'm sorry but not you are not barely able to open your eyes, brain like sludge and feeling worse than someone with flu.
Because if you felt like that you should not be putting other people's lives at risk by driving a car.
Someone who feels alert enough to drive for more than a few minutes with their child in the car is not in the state you describe as a good day.

I have not at any point said you do not have a genuine disability.

All points have been discussed by multiple posters