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 there is no GE to vote in at the moment! We will see what the Lib Dems have to say in 2029, perhaps?

OP can open a can of Coke, she can open a can of beans

Can she? Can she also cook them? Each and every time she needs to?

Lib Dems or Greens @Lentilweaver

And those who have no support like that, what are they supposed to do? If they wish to pay for such services out of their PIP allowance, it is a perfectly acceptable use imo.

This just shows how little you get it. As someone who has opened drink cans and been unable to open food cans - it actually is possible to find the former difficult but just possible, and the latter too hard metal or impossible to grip.

So many people commenting who think they can pass judgment and have no idea.

Exactly.

Starmer said in his election campaign that those with the "broadest shoulders" would "bear the brunt". Who knew that he meant sick and disabled people?

It’s a ring pull on both when I last checked.

I want to wade in on the heathy, convenience foods debate.

I get PIP for moderate cfs/me. I struggle with making meals. MY PIP payments afford me to be able to buy convenience foods that are healthy but are also expensive. Pre-chopped fruit and veg, ready grated cheese, steamed healthy ready meals, pre-cooked chicken/salmon, nuts, sourdough bread, good quality microwaveable rice, healthy Greek yoghurt, healthy fresh soup etc.

I eat well and it really does help my condition, there’s no debate about that. Without the PIP I wouldn’t be able to afford this food. With the proposed changes, it’s unlikely I’ll get standard living at my next review, meaning I won’t be able to buy these foods, meaning my diet will go down in quality, meaning my condition will worsen.

Cfs/me isn’t something you can push through. Your body literally cannot make energy at a cellular level.

They are different firmnesses of metal.

We bloody do! I bathe him, cut his nails, wash his hair, hoist him onto the toilet to have a shit. And guess what? We still have additional costs caused by his disability. Plus he's nearly 20 years old and bigger than me. How long will I be expected to physically care for him, bearing my mind my back is already screwed? DH can't do it. He's the one working full time to pay for everything else.

And the cooking? Every single time?

Very well said.

I’m sorry OP, sounds really hard. Not to jump on you, but the food was what stood out to me in your post as well - everything you mentioned is a heavily processed food and is probably contributing to symptoms. Can anyone help you with a few healthy things to eat which require no effort from you? E.g. overnight oats, some home made soup that can go in microwave, having some apples or cut carrots in the fridge to snack on. You might be surprised by how much this helps & generates more energy for you to prepare healthy food.

'as there seem to be many posters who believe that if I just ate healthily and good a good night’s sleep I’d be cured and ready to head out to a full time job'

Not one person has said that. Rather, cut out the junk food and eating better will improve things. It is well documented that lifestyle and good diet helps with fatigue type illnesses.

What does your 15yr old dd eat?

I can't advise on your financial situation, but if your diet is as you report, improving that could make a difference to your health. I am 73 and retired and have an autoimmune condition, I find if I don't pay attention to my diet, it has a very bad effect on my health.

I’ve already responded to their post. No words have been twisted. And everyone who nitpicks what I’m saying is ignoring the reality of CFS/ME and its risks (usually in order to pretend I am actually advocating a bad diet, something I’ve never done, lol, I’m literally an annoying vegan).

Eating better will help support overall health, yes. But it is absolutely not guaranteed to help OP’s symptoms.

Food is not medicine.

But if PIP is abolished people will rely in family. Historically this is what happened.

Cooking of baked beans?

Yes. Well, heating. No need to split hairs.

Love how people are pretending that those of us speaking about the realities of fatigue based conditions are encouraging people to eat badly! As opposed to explaining that it is better to eat something (even “unhealthy”) than not to eat.

I notice not one of these people has ever responded to my point about how the NHS itself (highly experienced dietetics staff, not generalists) will advocate for unhealthy food strongly if it’s what you can manage to get down or you need to maintain or increase weight…

Do you think so? I think if they get into power, they will trim benefits too, though possibly in different ways. They cant magick money out of nowhere.

Exactly.