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?

The point about the shortcuts (plastic snap beans), frozen jackets, prepped veg etc etc is they are also all more expensive. £3 for 4 frozen jackets in Sainsbury’s, compared with 79p for fresh potatoes. Having that additional cost on everything you need soon adds up and is the sort of thing that PIP can be used for. That’s just one small example of how being ill or disabled can cost more.

Indeed but it is important. I don't know the details but shouldn't a 15 year old be making some effort?

There are such things as paper plates, if you wish to go there. Does the pot noodle not have a cover that needs pulling off? I already said about the pre grated cheese, or did you miss that part? Maybe the OP should be getting more help then she currently is. A carer for example, and she should not be driving her child to school for a start. The LA should be providing a taxi for that.

I’m well aware of that and have lost several teeth. I’d still prefer that over a central line with daily risk of sepsis and the TPN risk of liver damage etc. Again, I have a very severe disability that affects my stomach and my entire gut along with most of my body. When I am doing better I actually eat very healthily, thanks to my spouse! The Coke period was a bad one. Still better than TPN.

1. switch slow cooker on
2. take lid off slow cooker
3. get veg out of fridge or freezer
4. cut open pack of prepared veg
5. put veg in cooker
6. put remaining veg back in fridge or freezer
7. get chicken pieces out of fridge
8. unwrap chicken pieces
9. put in cooker
10. wash hands after handling raw chicken
11. get stock cube out
12. unwrap stock cube
13. add stock cube
14. fill kettle
15. boil kettle
16. pour water into cooker
17. put lid on
18. get plate out
19. put food on plate
20. eat
21. wash up cooker
22. wash up plate
23. wash up cutlery

Slow cookers are a great, accessible way to cook. But they still require a lot more steps than most people think of. Because most people don't consider the weight of each individual action.

Yes, and people saying why can’t the teen daughter help. Daughter has SEN.

I could open a can but not a tin. I don’t think you understand. Lack of critical thinking skills perhaps.

i am pretty damn sure OP would feel a lot better and have a lot more energy if she overhauled her diet and at this stage I am feeling quite annoyed that my taxes are being used to support people who won’t take responsibility for their health at a basic level - I feel taken advantage of

No, she wouldn’t necessarily feel better because food doesn’t cure illness. I eat well and I’m still ill. And once again, OP has said that this is not every day.

Perhaps I had in mind the 15 year old more than the OP. Every sympathy for OP.

'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.'

I'm not referring to whether you should or should not receive pip I'm referring to this very selective list of what may cause problems without awareness for solutions. Many of us will have illnesses or care for someone with disabilities and we problem solve. If someone can't grate cheese have tuna (if one can open a can of coke they can open a can of tuna)

Again if someone can boil a kettle to eat a pot noodle they can turn a microwave on to eat something healthy.

I'm sure she should be getting more help, but she isn't, because there isn't more help. She explained about the taxi and the EHCP for her child.
And I had open pot noodle as one of my steps. Even pre-grated cheese has to come out of the fridge, be opened, used, and put back.
Paper plates are useful.

Because she was trying to keep me from having to go on TPN and I could tolerate very few things. You don’t know what constellation of issues I was dealing with.

I eat extremely healthily by choice whenever I am well enough to eat, which is thanks to my spouse being a wonderful (and patient and loving) cook.

I think the 15 year old is neither here nor there, OP says she's unable to do much care due to her own disabilities

It’s not true that opening a can of coke = opening other cans.

Not sure how many times I have to repeat this.

Well enlighten me then? I would be intrigued to know why a dietitian would give such advice.

She has ME. She’ll likely never have a “lot” of energy. It’s a fault in the body’s ability to make energy at a cellular level, in the mitochondria.

Ive often bargained with the universe that if it cured me of ME I’d relinquish a limb. That’s how disabling it is.

Labour pledges growth then does the opposite, which means cuts.

I have experience with health care and dieticians. There is not a chance coke is ever a good idea. High protein drinks, high calorie drinks whatever. Coke? Nope.

@LadyKenya I’m not going to list every single one of my specific diagnoses, no, sorry. It’s unduly identifying and also just private. I am open about some of the (relatively) common diagnoses on MN but some of them are rare and I would prefer to stay reasonably anon.

The dietitian reasonably enough felt the risk of Coke as a daily drink was considerably lesser than even further nutritional failure and going on TPN.

If you can read Mumsnet, you can look it up yourself, can't you?

Ah, but that assumes those drinks are suitable for the patient. Again, you don’t know a person’s circumstances. Generalising isn’t a good look.

Funny how without knowing my diagnoses or situation, you somehow think you know better than a specialist, senior dietitian in a very specialist NHS team.

I'm sorry but I think a 15 year could and should be preparing meals.

For context, there are 0 high calorie or supplement drinks I could have. I was extremely limited in what I could tolerate orally.

She has SEN.

I’m sorry but if someone is unable to muster the energy to open a can of beans then I don’t see how it would be possible to provide a reasonable standard of care for a fifteen year old with SEN.