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?

Gosh I hadn’t 🤔

No it isn't contrary at all. The OP no doubt has some level of anxiety/trauma/neurodivergence because most people with this sort of condition do. She probably has trouble sleeping but at the same time she's pushing herself to get up because she puts her children first.

I can assure you that it takes very little energy to read and post on Mumsnet...hence why I am on here for hours a day because I often don't have the energy to do anything else. Online shopping does take more energy because it requires thought whereas typing a reply to your unempathetic waffle takes very little thought. I'm actually writing a book about autism and most days I just can't do it because it takes so much more energy than writing on here.

The foods that the OP is eating are very addictive and when someone is feeling terrible it's difficult to not eat them. I ate half a bar of Tony's chocolonely yesterday, knowing it would probably make me feel worse, but I ate it anyway because I'm depressed and anxious and human.

What about rice, pasta, frozen veg. All cheap and as quick as a pot noodle to do.

I mean this is just a nonsensical comment. People are suggesting healthy foods with no to minimal prep time in order to maximise energy and improve likely vitamin deficiencies. Gruel is nothing to do with this. You’re losing your weak argument so making a straw man one instead.

Maybe wheelchair adapted treadmills to provide electricity? Make the disabled useful!

Yep. Completely agree. Eg Stephen hawkin able to work, would consider that very unlikely for many with even his exact disability.
My point was just that reading people here arguing that putting porridge in the microwave is impossible but having pot noodles isn’t that made me think actually I was maybe a bit naive in assuming the reassessment of pip is a terrible idea. Maybe it would be good to ensure that the people who are most severely impacted by their conditions are appropriately supported.

I don’t have any vitamin deficiencies. Because I don’t JUST eat pot noodles. I have regular blood works done.

Yes it would be amusing if it wasn't so depressing.

Why, why would anyone suggest gruel when in fact we've all suggested healthy cheap solutions.

I hate to break this to you but it wasn’t actually an argument. It’s called a joke.

I think this is one of those threads where showing empathy is understood as everyone agreeing that there is absolutely nothing the OP can do to improve her situation. With this we should all support maximum benefit payments for life so that people can stay home, post on Mumsnet all day and eat junk.

How can someone be too fatigued to think about a food slot time when they can post for 2 hours until 2am on mumsnet?

For many of us, what little energy we have ebbs and flows. Many conditions cause night-time wakefulness and insomnia. Those 2 a.m. posts may well be coming at a time when a person has been lying in bed for four or five hours, desperate to get some essential sleep without which getting through the next day will be twice as hard, but unable to, so they may be distracting themselves as best they can by doing something different. I have done this many, many times (chronic fatigue, partially caused by a lifelong sleep disorder, and chronic pain which has a lovely little habit of flaring up at bedtime despite my owning the best and most suitable mattress I can afford and taking as much exercise as I physically can during the day). At these times I do also sometimes try to attempt a bit of domestic planning, correspondence or whatever, but the results are generally not successful because my brain is exhausted.

Lying in bed posting on MN is a low-energy/low-stakes activity. A person's ability to do it at a certain time does not indicate they are functional/able to attend to their domestic planning as efficiently as they could at a different time. In fact, in the kind of scenario we are taking about, it's far more likely to indicate the opposite - that it's all the person is mentally or physically up to at that time.

If I say 'my brain is porridge' to DH, he knows I'm barely functional and that if he wants me to do or discuss something, I'll be better equipped to do it at another time. I suspect others on this thread and similar ones will be able to relate to the 'brain porridge' feeling. He also knows I may need his support on certain days. But I count myself very lucky to have DH on hand to help, because I think my life would be next to impossible at times without that help, especially as I'm a carer myself, to my elderly DM, and frequently after I've taken care of her needs, plus work, I am in too much pain or have no energy left over for anything else.

You can split hairs about bananas and Pot Noodles all you want, but if you're not struggling in this way yourself, please take a moment to count your blessings.

'reading people here arguing that putting porridge in the microwave is impossible but having pot noodles isn’t that made me think actually I was maybe a bit naive in assuming the reassessment of pip is a terrible idea. Maybe it would be good to ensure that the people who are most severely impacted by their conditions are appropriately supported'

Yes it's been an own goal in actually identifying why the reforms are needed.

Yes it's been an own goal in actually identifying why the reforms are needed.

It really hasn’t if people actually took on board the fact that some people cannot do it all the time. Or even regularly enough to be sustainable.

This.

You can have an illness and still make it irrefutably obvious that you don’t understand more severe conditions and/or energy limiting disabilities. That’s what many commenters have done on this thread. I am not saying none of those commenters has a medical condition or disability, as that’s very improbable. But the comments prove a lack of understanding and/or lack of empathy and/or refusal to understand.

At any time you can choose to stop posting such comments or to engage in an attempt to deepen your empathy (not only you, but all commenters in this vein). All I am doing is highlighting that there are numerous comments of this sort on the thread and that it’s very disappointing.

What I find depressing about this thread is the idea that those living with a serious illness should somehow just accept that their situation will never get better and not look at ways to improve their lives.

I just couldn’t live with an absence of hope and I speak as someone who has recovered from a brain tumour and in my 50’s, feel fitter and healthier than ever thanks to exercise, a healthy diet and lots of time outdoors.

On the contrary it’s a perfect encapsulation of the public’s lack of empathy.

Focus on what you can do not what you can't. Don't play the victim. How did we get to this point.

Posters are trying to outdo each other with their disabilities as if it is a badge of honour. I feel so sorry for the disabled that act with dignity. The comments reflect badly on them.

I think I feel the same? I simply don't understand the scenario where you can drive a 30 mile round trip on the school run, stopping to buy a can of coke on the way home but be too physically weak to open a tin of tuna and put a jacket potato in the microwave?

How does the OP manage to open/close the car doors? How does she manage to walk to/from the car? Apply the handbrake? Walk to/from petrol station? Pick up and carry a can of coke? Lift it onto the counter? Open/close the petrol station door?

I feel like I've wandered through the looking glass!

Can you say more about your work op? Securing new clients is good, for anyone really.

I understand, I don't know, but could the fact of you being disabled, and really struggling to get her to school, carry any weight? If you could not get her there at all, they would have to help, I would have thought. I hope that you get the help that you obviously need.

Lol, so we are told we are faking or frauds, but then actually giving examples of how serious and life interrupting a condition is, gets you labelled as undignified and playing the victim? Give me a break.

She’s never said she is at all times too physically weak to do those things. You’re being very unfair. That is a general discussion in the thread about how fatigue affects access to different foods. What OP eats should never have been attacked in the first place, but since it was, multiple posters started saying “ohhh there’s no difference, it’s not like it’s hard”, and several of us explained how specific things can be harder. But OP has never said she can’t make a jacket potato.

Posters are trying to outdo each other with their disabilities as if it is a badge of honour. I feel so sorry for the disabled that act with dignity. The comments reflect badly on them.

I don’t understand how pointing out how an illness or disability affects a person is the opposite of acting with dignity. Especially when people are showing a complete lack of understanding.

Yes I agree. There seems to be all sorts of reasons why op just HAS to eat only pot noodles that just make no sense.

I have a close family member who has diabetes and is an alcoholic. Benefits have really enabled him yo destroy his health. He gets money every week for alcohol but no help. He now has serious physical health issues and will likely not live much longer.

obviously ops situation is not the same as that, but there is an issue with people being given money who then don’t have to do anything to help themselves. Work generally is very beneficial to mental health. Also we are just not providing necessary medical support.