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?

It’s not that good food makes no difference. Of course it does, to all conditions with complex fatigue and inflammatory elements. But given your history you are likely also aware of the risk of a severe nutritional spiral downwards like some of the women who are currently hospitalised have suffered. Getting calories in is top priority with conditions that carry this risk. NHS dietetics that have proper experience will say the same. It’s better than not being fed at all, even though obviously healthy whole foods are better still.

We eat almost all whole foods vegan, which is definitely the best diet for me and if we go off it for vegan UPFs I feel a difference immediately. But I have also had times of such severe illness that I could only eat extremely limited foods and they were not “healthy” ones, and the NHS was strongly encouraging me to get in any calories my body could tolerate. After all, think how processed something like Fortisip is! It’s healthier as it’s nutritionally complete, of course, but if you’re alone in the community you have to take what you can.

All of this!

I keep saying it and saying it and nobody, so far, has been able to respond and explain how this is better.

Who’s paying for me? My dad who is on a pension or my partner that I don’t have?
it doesn’t work like that. I’m in the shit position of struggling working FT but not sick enough for PIP but I’m single so everything is on me

Doesn’t stop there being extra costs. You clearly have little idea of what it takes or costs to look after a disabled person. Disability benefits are far cheaper than going back to the institutions and permanent hospital stays of 60 years ago.

Because it’s not. The government hasn’t been upfront about the knock on effects of these cuts on the care system - I’ve posted on this upthread. They may bring down the welfare bill but they will balloon care costs as a result.

DS has muscular dystrophy. He can't lift his arms above waist level.

His PIP pays towards our extortionate electricity bill (£300 a month) and additional fuel for his medical appointments. The entirety of his mobility component pays for the WAV he has from Motability and the remaining £32 helps offset the cost of me not being able to work due to his care needs. I do get a whole £82 a week for the privilege though.

He does have an Xbox live membership though which he is able to play using an adapted controller. Maybe he should give that up as I'm not sure he's allowed to have any kind of life other than merely existing judging by this thread! Or is he "worthy" because you can see his wheelchair?

My husband does. He is my carer. He needs a part time job that is flexible enough for him to go home straight away if I have a seizure. That job doesn't pay particularly well, so we need benefits.

This. People don’t want to think about the extra costs because some of them are quite unpleasant, but for example if you suffer from incontinence, you end up having to run the washing machine more often as there is additional laundry (and it’s not stuff that can be left to sit for days). Understandably disabled people don’t tend to bring up these costs in chat to people around them! But they’re very real.

That’s just one example but there are others.

Have you considered some of it is peri menopause? I have all the symptoms you mention, I can fall asleep standing up leaning on the kitchen counter some days!

The comments about your diet are well meant - you absolutely have to change it and remove the crap from your diet. You can make easier choices: eg Don’t buy expensive berries - buy apples or oranges or tinned fruit. Much better for breakfast and snacks on the go. They last ages in the fridge or a cool cupboard. Don’t buy pizza - make quick cook pasta with a jar of pesto.

And increase your omega 3 oils- buy tinned mackeral and eat it with toast or a tin of mixed beans and a squeeze of bottled lemon juice. These things take seconds and you don’t have to clean up an oven.

Don't twist people's words. Nobody has asked why is cooking hard, they have just pointed out that pressing buttons on a microwave to heat a jacket potato is exactly the same as pressing the kettle button to heat water for a pot noodle.
You just don't like hearing it.
There's absolutely loads of more nutritious food than pot noodles that requires no more preparation than a pot noodle.

Agree wholeheartedly with the opinion expressed in this post.

I wrote to my Labour MP protesting about the new PIP rules, telling them I've always been a Labour voter but now will be looking for a party to vote for that shows more compassion and care towards those who are ill and have disabilities. I got a terse note back telling me he didn't like the "tone of my letter". Well sorry, but I really don't like the tone of this Labour Government.

No other political party would be any different

Yes the OPs diet doesn't sound like it is helping her at all.

Previous posters mentioned hair washing appointments covered by PIP. A family member can wash hair and trim nails.

I’m not twisting anyone’s words. People repeatedly asked for specific clarifications and explanation, I gave them, and got further replies that showed no one was even prepared to make an attempt to understand. Just more “but what about…” and “surely it can’t be THAT hard”. Just like the comment by the person who said no one is unable to brush their own hair.

No one’s words are being twisted. I and others are frustrated by the concrete ableism in this thread. It’s fair enough to discuss how benefits work in the abstract on general threads, but this is more of a support thread and OP is genuinely very unwell. The attacks are totally unfair on her.

Oh, this makes me want to contact my MP too. Thanks for doing this and making the effort.

And what about what you have with the jacket? Or do you have them with nothing on? Beans? Need opening and heating. Tuna..can needs opening and draining. Cheese, needs grating. Unless you get pre grated stuff or tuna you can just open straight on but these options are more expensive.

and for those with conditions that affect their limbs? That make nail trimming really difficult and painful? They should just suck it up and suffer so you feel better?

How many family members do you wash hair and trim nails for?

Which party is everyone voting for that will show more care than Labour?

All of which would expend less energy than walking into a garage for a can of coke. Probably cheaper too.

How do you know? Are you in OP’s shoes?

I don't believe it is yours and your husbands situation that is at question with PIP cut backs. They are cutting off people who are in remission and doesn't need it anymore. Also people who can rightfully manage on their own, but blow their illnesses out of proportion to get it. They also want to encourage some people on PIP to go back to work, because it replaced income for many and not necessarily because they can't work.

@Emanresuunknown Also you seem to have missed the numerous posts where I point out the risk of nutritional compromise with OP’s condition. Who cares if she eats a pot noodle? I’ve never eaten one myself but a PP says that based on her analysis they are actually not that bad compared to other ready meals. The key thing about boiling a kettle is that it’s fast, and the mental load is very minimal. Brain fog and mental fatigue are part of CFS/ME too.

None of this is because I am somehow invested in the pot noodle or want people to eat them. But shaming CFS/ME sufferers for what they eat is potentially genuinely harmful. This is 100% a “fed is best” condition, and if you don’t get that it’s because you don’t understand the risks of it or how it can potentially worsen.

Car doors can be opened automatically with a remote.

Exactly! There is no money. Try understanding that. It would be great if we could afford for people to get someone to cut their nails other than their husband, but we can’t. Get a grip. Any party that says it will give you money for this is lying to you.