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?

And you sound like someone who is avoiding answering the specific points that have been made.

I'm sorry life is so difficult for you, but the posters on here are talking about what would be possible for the OP, not you. Microwaving a potato takes about 4 minutes, heating an individual pot of beans one minute, opening a bag if grated cheese ten seconds. There’s nothing to suggest the OP can’t stay out of bed for six minutes. And if she has the mental acuity to drive (even with hand controls) she can do stuff like work out how to microwave two things.

I think benefits should be reserved for those with no other options. Plenty of people live off one salary. The thought of downsizing to be able to live off one salary, or moving back in with parents who may well be able to help doesn’t seem to occur to people. It seems to be the government’s responsibility to ensure you have exactly the same life as you had without the disability. Like you shouldn’t look to the resources you have available to you first and any sort of hardship is intolerable. Disabilities should be financially compensated for by the state.

It’s a big change from the attitudes of the past and I think goes a long way to explaining why our public finances are like they are.

I’ve answered dozens of specific points and received the exact same dismissive replies every time. Feel free to reread the thread if you missed it,

I might be stating the obvious, but have you ever considered therapy? My friend managed to reach remission and her life back on this condition by sorting out her past traumas.

Plenty of people move abroad. I know people who have moved recently. Also numerous threads on it.

There have been numerous suggestions but none seem to be acceptable. The only thing that people seem to expect is the government to throw money at them. That is no longer going to happen, people will need to rely on family / adapt. Being in denial is certainly not the answer, if anything makes the adjustment harder.

My DH needs help with personal care, dressing, needs help to prepare meals etc. and uses a wheelchair. But he can drive. It is something he really enjoys too, and is good at. Should he lose his PIP?

Just as an aside, my son likes pot noodles and he had a restricted diet at one point for autism related reasons. I actually looked at the salt, fat, nutrition of pot noodles v a number of other ready meals as i was worried, and it wasnt that different.

I'm not suggesting they are a health food, but some of the healthier looking ready meals are also low in protein, high in salt and sugar.

It's not madness and just being very bloody grateful you've never felt like that.

I can't be bothered to try and find it on the thread again, but I'm pretty sure she was talking about her hair being washed not brushed anyway wasn't she?

Ask my name states I have had strokes, I can't manipulate things in my hand or hold them very tight so yes brushing my hair is a complete fucking nightmare, washing my hair is hit and miss, I can't feel my head and my head can't feel my hands, so I just have to hope that by doing it every day my hair will all get washed and be clean over a few days even if not washed well each day.

So maybe just count your lucky stars and stop telling other people their experience isn't real

I would just like to know which country people would have moved to, if not for Brexit. I know countries where life is cheap, but I don't think such countries offer disability benefits, do they? Cheap countries tend to rely on family help.

As I said some will still score a 4 but driving and being responsible for controlling and maneuvering a car is a physical and mental ability so every claimant who can do this needs to be assessed first.

Absolutely. It is the unreasonable expectations of some that will cause the system to collapse, leaving nothing for even the most severely disabled which would be catastrophic.

you really are the gift that keeps giving🙇🏻‍♀️🙇🏻‍♀️

Why have you put difficulty in inverted commas??

It is a long and difficult form to fill-in, I had to ask a friend to do it for me because I was physically and mentally unable to do it myself.

I received my Pip award letter yesterday, the person that did the assessment on the phone was very nice, but she's written contradictory things that make no sense, so now I have to decide whether it is worth going through an appeal tribunal to put it right or not and just live with the Assessment they have made.

DVLA are happy for him to continue driving with hand controls. Many disabled people use them.

It does look like you’ll lose money with Labour’s proposals.

Hard to know what will happen with people in the same situation.

Also same as @Lentilweaverif life is hard for the op now I doubt the energy is there to move countries, or that it’s easy for those in a similar position. Had Brexit not happened.

I've went to the doctor with very similar symptoms. They did a blood test and diagnosed a vitamin D deficiency and an under active thryroid.
Vitamin D deficiency is common and the doctor said that probably most people should be taking a vitamin D supplement or spending at least 15 minutes every day outside in the sun.

I'm now on supplements and medication for the thyroid and I feel so much better.

Go to your doctor. It might not be ME.

Agree with this! @Sourwitch You should definitely see your GP and ask for some blood tests, as it might be something very treatable and then you’d feel better.

I know nothing about CFS and I have nothing but the utmost sympathy for sufferers.

There should be better treatments available. And more research.

I am also one of those people, possibly unreasonably, hyper-focused on the OP's diet though. Is it possible to use PIP to pay for a service that delivers better nutrition? Even as a completely healthy person, that diet would absolutely floor me.

It's in the name. Personal independence payments.

agree its a big worry. try adding vitamins i know they can boost you up, i am not well and really eat lots of fruit and veg they can also boost you up, try not to worry ,

I have been saying for a while that the UK is going to become like many Asian or Mediterranean countries: intergenerational living, community over individual, reduced help from the state, people relying on families.

I am not saying that this is a good thing. I just think it's going to happen because the benefits bill is not sustainable.

I don’t get PIP but was recently diagnosed with ME/CFS and seem to have been left to get on with it. It’s hell, I have tried everything to improve the way I feel, and I have always eaten very healthy food.

Do you understand that you can’t actually compel another person to help? Even your husband?

Fucking hell, half the posters on these boards can’t even get their partners to pick up their own pants off the floor - do you imagine they’re going to willingly cut toenails and brush hair?!

I mean, if you’ve got a willing partner then lovely, you don’t need the salon. Although quite often with disability, expert podiatry is actually needed for reasons other than just cutting nails. And of course, that’s assuming they’re capable.

My DM has a husband. He doesn’t do her personal care because he’s terrible at it. He’s cut her accidentally on more than one occasion. She’s on blood thinners so it’s actually really dangerous. It’s actually quite awkward doing personal care in someone else.

Your responses are mind blowing in their ignorance. A spouse does not have a legal responsibility to cut his or her partner’s toenails. It’s entirely reasonable to use PIP to get this type of personal care.

Don’t like it? Campaign to get the law changed to force people to help others. A authoritarian state essentially - but go for it. Careful what you wish for though…it might end up legally forcing you to actually help someone yourself one day.

Podiatry is not an unreasonable expectation for many illnesses and disabilities. One that comes to mind is diabetes: it cannot be managed by a husband cutting your nails.

I work, i'm my husbands' carer. My wage is £81.90 per week.

The benefits you are suggesting should pay our bills are not enough. So I have to use his PIP to help pay them.

Would you like to swap lives? Show me how it should be done?