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?

Who's encouraging? People who struggle with food prep have simply been attempting to point out that it's harder to stay well nourished in certain circumstances.

'It’s threads like these where people wilfully refuse to understand how things can be for people'

We all understand genuine disabilitiy is serious, those with serious diagnoses require all the support possible. Many of us have direct knowledge and experience.

What is hard to understand is some of the flimsy explanations regarding food prep and kettles v microwaves and it is stuff like this mindset that has made these reforms necessary, sadly

Many conditions are not disabilities.

Depending on the level of SEN needs, she may be entitled to school transport if her SEN is registered with the LA.

Legally speaking you are incorrect.

That’s highly misleading. Fed is best.

But they are classed as a disability under law under the equality act
if she has a disability then she is disabled

@Catterpillarsflipflops

From the Gov website: You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities

ME/CFS is a disability.

I didn't say it wasn't. I said many conditions are not disabilities.

I don't think that's right. There's about 33 million working age adults and 3.5 million pip claims (some of whom work)

The big concern is in youngster 16-34 who are neet which saw the big rise. I'd think that's what your figure relates to?

You obviously don’t understand or are wilfully not listening because it has been explained to you many times.

I quoted @Catterpillarsflipflops, not you.

Just because I disagree with a pp posts about why a pot noodle is easy but anything else is not doesn't mean I don't understand what they are saying, i just disagree.

Eat well, it is just as easy as eating badly. Optimise self care, go to bed at 10pm, get up at 7am. It won't cure anything but it is better than pot noodles and being online at 2am.

There's actually a bizarre level of insistence that OP could realistically only have energy for a pot noodle or pizza, even in the face of people pointing out very logical and far more nutritious alternatives. I genuinely don't think people without energy have to be poorly nourished. And I don't understand why people are so adamantly defending that position in a day and age when you can pop a meal in a microwave.

And maybe don’t be posting on social media for hours? Get out and get a breath of fresh air?

I had a recent ex who kept trying to make plans for what the two of us could do 'when I was better'.

It was really hard to get him to understand that I wasn't ever going to get better. That even if he saw me being relatively capable on a particular day, that it was an anomaly.

What was significantly harder than that was trying to get myself to understand that I was never going to get better. That my random good days could never be relied upon happening.

I had come to terms with it, but now I feel like I've got the entirety of the UK on at me about how I should try harder to magically make myself better. I feel like I've got to justify my existence all over again.

So in your scenario where 'money is removed', what would a person who has no ability to work, or cannot find it, due to their disabilities (and has no family, before you start all that again) actually live on?

The answer's nothing, isn't it?
Nothing.
And then if they became homeless and were begging in the street you'd have a problem with that, too. Wouldn't be very 'dignified', would it?

Nobody wants to be disabled or labelled as such. But the fact that you have come on to a thread posted by a worried person who is struggling - i.e. a thread whose context is the difficulties that come with disability - and proceed to come out with some of the things you have said, is absolutely disgusting. Sounds like you'd rather we re-stigmatised disability and left those who are struggling to rot.

Doesn't the GB News website have forums? You'd get more clapback there, I feel. If not, try the Daily Mail.

I compleatly sympathise with you.i am fortunate enough to have 4 points on one of the descripters but I fear I will loose them when it gets reviewed. This country has gone to shit .people have to jump through so many hoops to get pip how anyone can think it's fraud is beyond me.

Exactly this. A lot of the recommended way of things is about acceptance, but that feels like giving up. But the flip side of having hope brings the problems I mentioned. I haven’t yet found a way to have both acceptance and hope at the same time and I swing between the two, which really doesn’t help.

If willing was all it took to get better I’d be the healthiest person ever, as I’m sure you would be too. 😜

Who exactly are you addressing?

Whoever the cap fits

Potentially me. The irony being that I am actually sat in the sunshine in the garden because my daughter helped me out here. And I don’t really have a great deal else I can do than to post on here. Well, I could do an audiobook I suppose.

I'd be ill on that sort of diet, I'm not very good with aspartame which seems to be in everything. I'd pick a cold smoothie over a can of cola for a wake up drink, but if you need caffeine tea is as good as any.
But you don't have to cook from scratch, there's bags of preprepared veg that you can microwave for example. Or encourage your teen to pick up the cooking and filling the basket of online shopping, she'll have to learn one day and she may as well help out in order to learn, so set her a shopping budget start her on cooking simple stuff (Delia's 'How to Cook' might be good) and see how she gets on.

A bag of walnut or almond kernels is a good snack, you can keep one in the car, they last for ages as you don't need many. I fold the top down clip the bag with a clothes peg. Another good snack is bananas, they only need peeling.
Hope you can find a better diet and improve on where you are.

What other arrangements would you like me to make? A taxi to her school is £25 each way. So that would be £250 a week to get her to and from school. There are no suitable schools nearer, trust me if there was she’d be going to them. There is no public transport to where her school is, well actually there is, but it would involve a 2 and a quarter hour journey involving a train and 2 buses, which isn’t very realistic for a SEN child to do.

I’m almost totally confined to bed. I certainly can’t leave the house alone as I am wheelchair dependent and we have to carry medical equipment with us. My spouse is at work and the carer isn’t here all the time.

Funny how easy it is to suggest things to other people when you don’t have empathy for them or understand what their disabilities are actually like.

Yeah, I usually don’t post as much in one day as I have today but I’m having a hard time settling because I am feeling all rattled and wired due to a family death. They’re so ready to tell us what to do, absent any knowledge of the circumstances…