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?

Like I pointed out in a PP, it’s not about that. It’s about the fact that if you have a jacket, you don’t have it plain, you have to ‘do’ something else to go with it. Same with chicken and veg. Then there’s the cleaning up after these things. Pizza and pot noodles are ‘one stop’ things that don’t need accompaniments and have minimal waste.

And I will point out again that OP has said this is not every day.

There’s one simple reason no dietitian would recommend coke. The chemicals used to make it dark are calcium blockers and drinking it regularly is likely to cause osteoporosis. The only time I’ve ever had a doctor tell me to drink coke was to help stop the runs. Full fat coke, let it go flat. Very temporary measure that worked for me.

Again, they are different strengths of metal.

The very fact that you don’t get this shows that you have not experienced a severe fatigue based condition.

Every single comment of this nature highlights how poorly understood such conditions are.

You don’t know what constellation of conditions I had that caused it to be recommended. But it was.

Looks like you are wasting your breath here...

Yet you still don’t answer what I asked about the fact that these things need extra prep. Draining the tuna, heating the beans, grating the cheese (unless you get the more expensive convenient options). And the cleaning up. And being able to do this every single time you need to.

Try instant mash (make sure it’s clean, check the label) microwave for a few minutes. Microwave some beans. Much better alternative to a toxic pot noodle.
I’ve found with ME simple, easy to digest food is safest. My favourite vegetables seem to poison my system. It’s very depressing.

indeed. Dickens was not writing just to be entertaining. He was making a point about poverty in the 19th century. In the 21st century, the same arguments about the undeserving and the deserving poor are being discussed, the same attitudes coming to the fore.

Dickens’ Scrooge redeemed itself, and the tale became so popular because it was so rare in real life that redemption among the rich occurred, like now.

Haha, well this was a very specialist and senior dietitian, actually, in a specialist team dealing with particularly severe physical conditions. The reason was not just general weight gain.

Sad to see such doubtfulness when I am just reporting a very real conversation with an expert in her field. You have no idea what the factors involved were or why it was so complex.

You can get snap pot beans. Microwave 1 minute, not even a can.

And yes, more expensive than a tin but cheaper than a can of coke and a bloody pot noodle!

Frozen jacket potatoes are available, that do not require all of that prep, and can just be microwaved, or put in the oven, and topped with pre grated cheese, or coleslaw.

I wasn't asking for advice.

If this is a typical day, you don't have a great diet which will contribute to symptoms. DD is 15, is there any way she can get to school without you either by public transport or a lift ? It seems that taking her in first thing partially wipes you out for the day. I do think that having regular employment with a set schedule (reduced hours, wfh) would be of benefit to you and take some off the stress of wooing clients and give you a more reliable income when PIP is removed.

Cost more though.
And you still have to get them out the freezer, open the bag, put them in the microwave, get them out the microwave, wash up the plate, which is nearly as many steps as the pot noodle by itself. And they need something with them.

Someone will be along in a minute to say OP couldn’t open a snap pot. Quite different to a can of Coke or pot noodle.

1. Take lid off slow cooker
2. Cut open pack of prepared veg
3. Put veg in cooker
4. Unwrap chicken pieces
5. Put in cooker
6. Add stock cube and water
7. Put lid on
8. Eat.

I think people would be amazed at what people without family help who just have carers eat, especially if they are bedbound or unable to cook themselves
most get 15-30 mins visits
In 30 mins you’re expected to change a pad and clean person up, maybe hoist from chair to bed, do medication, tidy/clean whatever you’ve used, wash up, note everything in a book and oh yeah - give the person food and drink. Realistically it’s a ready meal or sandwich and that’s it and people are eating that for years on end

Absolutely. Complete and utter nonsense and madness.

Good thing that the dietitian I saw was a senior with very specialist expertise, then, and not a student doing a BSc. I’m not surprised someone still at undergrad level wouldn’t have the experience and specialist knowledge to handle a very complex case.

Im grateful to that dietitian for keeping me off TPN which has risks of life threatening complications.

The 15 year old could do this?

if OP wants a set of healthy meal ideas that are no more difficult or expensive than pot noddles and frozen pizza we would help - do it now whilst you have the PIP and see the benefits

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

given I know sone disabled people and the efforts they go to to maximise their health - including healthy meals whilst exhausted , in significant pain and barely able to grasp a knife or fork - I will easily remember that not all are like OP but it still makes me mad

OP: posts asking for support

MN: myriad of long, overly complex posts about cooking tuna jacket potatoes vs pot noodles

This is what I had when I lived alone and had carers! Since I couldn’t open tins, it was the only way I could ever make beans. Still couldn’t do it often, but it is indeed a great innovation.

Coke not good for you or your teeth PP.

Every post like yours shows how poorly understood fatigue based illnesses are.